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Category:

Metastatic Breast Cancer

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Question:  #31 6/1/2009		Q:	We learned Friday that Mom has cancer cells in her spinal fluid. A scary diagnosis, but it also explains some of the symptoms she''s been experiencing over the last 7-8 months (pressure/pain/numbness in the mandible, dizziness, muscle weakness, imbalance). Her primary tumor was discovered in 1992, she had a mastectomy, chemo, taxol, bone mets first discovered in 2000, which responded well to chemo and she was symptom-free until 2007. We will meet with her oncologist (same one who has treated her since 1992) on Tuesday. I''ve discussed treatment options with the Nurse Practitioner, and understand that they expect to have her undergo a combo of chemo (delivered directly to the spinal fluid - forget the name for that), through either a needle or a head port/reservoir. She''s had brain MRIs (a few over the last couple of months, and all came back negative). She''d had a spinal tap in late January, but it came back negative. It''s my understanding this can happen when the sample just didn''t capture any cancer cells. Dr. Lillie, I know you will say this is very grave. I appreciate that (or am at least trying to). How successful has chemo been with managing the disease in spinal fluid? Am I completely off-base to be hopeful that the slow growth of the cancer cells through her bone mets bodes well for her? Am I wrong to be encouraged that we now have a diagnosis for the symptoms she''s been experiencing for not quite the last 7-8 months - and now those symptoms can be addressed specifically? What questions should we be asking her oncologist? (Aside from the obvious). My mom is 66 and otherwise healthy (oh, but the "otherwise" . . .) Thanks in advance.
		A:	Hi Jennifer, This is Ben Park MD PhD (one of the breast oncologists here at Hopkins) and your question was relayed to me by Lillie. Cancer in the spinal fluid is a serious diagnosis, but everyone is different in how they respond to therapy. It may be that your mom's disease will still be quite sensitive to chemotherapy, and therefore it is worth seeing how she does with the intrathecal (as we call it) chemo. However, in the metastatic setting, the goal of therapy is no longer curative, but to try and treat the disease as best we can with minimum side effects. This has to be of paramount importance, as we don't want the treatments to be worse than the disease. If at any point your mom feels the side effects are too much (and these can range widely), she needs to let her oncologist know this. She and your family should be the ones to make the decision of whether getting chemo is worth it; our job as oncologists is to help make that an informed choice. I sincerely hope that helped. Best regards, Ben
Question:  #32 5/31/2009		Q:	hi lilli, i have been reading your site extensively beacause my wife now has stage 4 breast cancer. initial cancer was 24 yrs ago mixed ductal-lobular es+ pr- stage 3 5 of 13 nodes pos. treated with mastectomy and immediated tram flap reconstruction, 8 rds chemo, no radiation. recurrence in scar tissue 14yrs out treated with surgical resection, radiation x30, tamoxifen 5 yrs, roloxafen 2 yrs. newly diagnosed bc in contralateral breast in 2009. at presurgical workup lesions discovered in lungs. lumpectomy had clean margins and 0 pos nodes, chest ct confirms lesions in lungs and broncoscopic biopsy of two lesions confirms dx. all tumors are es+ pr- her2-. additional bone scan and abdominal ct show lesions in bone suspicious of metastatic disease. treatment plan is for short course of rad therapy 18 rds and femara. needless to say we have been in shock since dx of stage 4 ds. my question is this, which cancer are mets from? cleveland clinic oncologist seem to think it is from recurrance 10 yrs ago. is it also possibly from current tumor approx 1 cm or could it be from the original tumors 24 yrs ago? very confusing situation, don''t know what to expect.
		A:	oh my. more than likely from the recurrence of 10 years ago. the pathologist is the best one to figure this out by looking at HER2neu as well, grade and some other factors like Ki67. probably doesn't matter when you think about it. the facts remain the same that this is stage IV breast cancer. now to be treated as a chronic disease. so get a copy of 100 questions and answers about metastatic breast cancer. I am hoping it will be helpful for you. that was my goal in writing it. we are also holding a special retreat for couples dealing with metastatic breast cancer. sept 11 and 12. if you and your wife would like to attend just contact Debby Stewart at dstewa24@jhmi.edu . it is free but registration and committment to come is important. we spend a lot of money on making this even possible. great way to meet others in the same boat too. be sure they do HER2neu and hormone receptors on the tissue obtained fromt he lung biopsies. sometimes the prognostic factors change. we don't know why but they do. hang in... L
Question:  #33 6/1/2009		Q:	Hi Liilie, I was diagnosed with stage 1 er/pr- Her2neu+ breast cancer with no node involvement in 2005. The tumor size was less than 1 cm. I had a bilateral mastectomy and four rounds of Taxotere/Carboplatin with a year of Herceptin. Other than feeling unwell for these two years (I had CFIDS before treatment), there has been no recurrences or mets as far as I can tell and I''ve had abdominal CT scans and full body bone scan in 2008. However, yesterday for another unrelated reason, I had a Chest CT scan and they found two 4 mm nodules in my lungs. Is this cause for concern? What do you recommend? My sister died from BC in 2006 with mets to her bone, liver, lung, and brain. However, my tumor was much smaller than hers and she had lymph node involvement. Thank you for this wonderful website. Allison
		A:	It is not cause for panic as many people develop such small nodules as we age. However, given a history of cancer this has to be followed carefully and reevaluating sooner than a year makes sense. At this size,they are too small to biopsy or do things like PET imaging, so close follow up is key. Also, given your sister's history of breast cancer, you should talk to your oncologist about genetic testing for BRCA1 and BRCA2 if you haven't done so already. Best.
Question:  #34 5/23/2009		Q:	what are the chances of calcifications showing up in mammogram in 2006 and developing into infiltrated ductal carcinoma with negative hormone receptors in 2009? This is in a 70 year of age woman. She had a mastectomy 11 years ago with the same diagnosis. Would this be a new cancer or has it spread from the first site. Thank you.
		A:	breast cancer doesn't spread from one breast to another. so given she had a mastectomy i'm assuming you are referring to her other breast. that said, calcifications also don't "develop into" breast cancer. if a calcification is cancer it was cancer from its inception. radiologists look for calcs that are irregular in shape when looked at more closely, under maginification, and whether they are clustered together. another signal is if they form a linear pattern-- a line, implying they are tracking along the lining of a duct. so for this woman it is a new cancer. it does take breast cancer a while (several years) to get itself established and it is not unusual to see backwards on films when it began to declare itself. (always easy to find the needle in the haystack when you have sat upon the needle.) I hope she does well. L
Question:  #35 5/10/2009		Q:	I''ve heard that Hopkins offers retreats for women with metastastic disease. is this true and are they only for hopkins patients?
		A:	Yes, we do. we are offering special retreats for women dealing with metastatic disease along with their husband/partner who is involved in their care and of course support. We have one coming up in Sept,and we are open to the idea of women being treated elsewhere to come if slots are available. if interested, contact Deb Stewart at 410-502-0516 or dstewa24@jhmi.edu for more details.
Question:  #36 5/11/2009		Q:	Dear Lillie, Thankyou for your honesty with answering questions here. My wife has had breast cancer for 5 years ER PR positive her2 negative with metastic to the liver for the past 3 years. She has had hormonal treatment including 3 lines of chemo being AC, xeloda/Avastin, and now on docetaxel and carboplatin for the past 12 months keeping the tumour stable. When and if there is a refractory response to this chemo what other chemos are left?
		A:	There are many others, but similar to your other question, it all depends on how your wife's overall health is, and how to best balance chance of benefit with toxicity. Just because we could give more chemo doesn't necessarily mean that we always should. Sounds like your doctor is doing a great job. Best wishes.
Question:  #37 5/10/2009		Q:	Hi, I''m 38 years old woman, one year ago I was diagnosted with right breast carcinoma.The stadification risult from sonogarfy and mammogary T1NoMo, with 2 massa dimens, 8and 5 mm, in quadratin infero medial.The biopsy results Lobular Invasive Carcinoma, no nodal involvement to the axilla.I was underwant to definite treatment-radical Mastectomy with axillary disection with imediately riconstruction with silicon protesis.Post operator stadification pT1NoMo. The hormonal status ER+75% PR+ 45 HER2 "1+" .My doctors recomends me to not follow with chemotherapy regime, because of the early stage of breast cancer, and I was for one year with Tamoxifen, 20 mg a day.During this year after intervention I was in periodically control of mammogarfy and ultrasound, blood analyses and every thing was ok.But unfornately 2 months ago I was with some strange pain in my muscles and articular pain, not exactely bone pain.My pain were only when I moved.I thought was by Tamoxifen because I have''heard that it may cause that kind of pain, beacuse I was in premenstrual age.I made DEXA and I resulted with Ostopenia T -2 garde.But I made Chintigraphy and than CT bone scan, and doctors told me that there were mets, in bone,hips,right rib,and chest. All of us were scary, beacuse all the doctors told me that my diagnose was with good perspective, at first. They did not make bone biopsy, but I started imediately chemotherapy regime TAC(with taxotere) and now I''m in the last six cycle.Now I m free of pain and the doctors told me that this is a good sign, after twoo weeks Im going to have another CT to see what''s happen.I''m sorry for this long message bu my questions are: 1. How it is possible with my diagnose that cancer spreed so fast, even I was with early stage of br.canc one eyar ago? 2. The cause of recurrence could be that I should made the chemotherapy when I was diagnosticated? 3.Could be the doctors were wrong and my spots were from arthrits(as I have in my family story) 4.Could be the internial mammary the cause of transmited disease? 5.If the "spots" are there again, do you think that I need to make other chemotherapy cycle? Thank you very mutch
		A:	no doublt shocking and disappointing to get such news. though you clearly had stage 1 breast cancer with favorable prognostic factors, there are no guarantees that women with such pathology will do well and not need chemo. some doctors would have given you chemo solely based on your young age. others might have done oncotypeDX to see what your recurrence score would be. we can't look backwards though and rewind the video of your life. we must press forward now. good that the bone pain is subsiding. if some lesions remain they may treat them with radiation or even putting you on a different chemo drug or possibly a different hormonal therapy. even getting ovaries out is possible.
Question:  #38 4/26/2009		Q:	Dear Lilly, Thank you for your help and honesty in the past. I have written to you several times in the past year or so. I have a metaplastic, triple negative tumor, was Stage IV at initial Dx with liver mets. Over the the last year have had mastectomy, RFA, the whole round of chemos - AC, Taxol, Xeloda, Avastin, Abaraxane, Craboplatin and now trying Navelbine. Only 2 parital reponses that only last a couple of months. Last PET showed much progression in my liver and lymph nodes in neck and chest. My liver is swollen and enlarged and I am having a lot of abdominal discomfort. My legs, ankles have been swelling. Onc put me on 2 kinds of diuirtics to try and drain the fuild and is also giving me pain meds. Since we just switched to Navelbine he wanted to try a few more treatments to see if if made me feel any better. He said I could try Doxil but I have already failed two taxane drugs. I have had lots of low blood count problems from the start and he doesn''t think I can tolerate Ixbeilone. I am 51 and I think I am where I have accepted this may be the end and I am not afraid of dying - I beleive in a loving and gracing God and know I will go to heaven. I don''t want to sound morbid and I am willing to fight and not give up but I don''t want to chase false hope either. Do you think it is reasonable to not go forward with more chemo and that I have probably exhausted anything that would really give me a substantially improvement in the quality of life? Your thoughts would be much appreciated.
		A:	whta a brave and courageous woman you are... I admire you for being able to reach the incredibly difficult place where acceptance lives and thrives. Quality of life is what its all about now. it is reasonable to pull back and not do chemo. it also though is okay to continue to pursue it, if the side effects for you will be minimal and tolerable for you. it is your choice and no one else's. Clearly the disease is progressing and the symptoms you are manifesting is shouting that out within your body. be sure your wishes are well known to your family. it's important that they understand your decision and how to came to be in that "special place." I hope for as long as you can that you stay in touch with me. My thoughts and prayers are with you, and always will be. I'm sending you a verse (below) that brings me great peace... I hope it does the same for you, and your family. We are holding retreats for women with metastatic disease. I m not sure where you live or if you would be well enough to attend one in the future but thought i'd mention it. (go to www.hopkinsbreastcenter.org and click on upcoming events) Here is the verse now-- called, the ship.take care dear. LS The Ship I stand at the shore— a ship spread her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength as I watch her like a speck of white cloud just where the sea and sky come down to mingle with each other. Then someone at my side says, “There, she is gone!” Gone? Gone where? Gone from my sight, that is all. She is just as large in mast and hull and spar as she was when she left my side... and just as able to bear her load of living freight to the place of her destination. Her diminished size is in me, not in her; and just at the moment that someone at my side says, “There, she is gone”, there are other eyes watching and other voices ready to take up the glad shout, “Here she comes!” Henry Van Dyke
Question:  #39 4/20/2009		Q:	I am a 12 year survivor but have been fighting the fight the whole time. I''ve been very fortunate. I was diagnosed with mestatic breast cancer about 3 years ago. I''ve had a mestectomy, been on all the chemos, now i have a cutaneous metastasis about 4 on my left side and a large lymph nodes under my arm, I am taking gemzar chemo. I am having severe pain in my left side that pierces all the way through my back to stomach level 7 -8. My doctor doesn''t say much. We are continuing the treatment but i don''t believe it is working as the pain is increasing, I am very weak, difficult to breath, and the cutateous spot is not getting any better...looks to be spreading on my back under arms. I am trying to prepare myself for what is to come. If I were to stop the chemo do you have a guess as to how much time I would have. My cancer is ER-, PR-, and HER2/neu expression 1+. I''m not giving up hope just trying to figure out how much longer I can work... I need the insurance and paycheck but it gets more difficult every day to keep going. An honest answer would be most appreciated..I''m tough...I''ve survived 12 years so far. Thanks you
		A:	ohmy. You are describing progression of the breast cancer with pain, shortness of breath and growing cancer. You are asking a very brave question. And, you are right, it is time to be frank. I think you should be talking to your oncologist who may be thinking the same things you are. With chemo not working, the treatment and personal goals should be for you to have quality of life like management of the pain and other symptoms. Perhaps now is time to talk with family and friends and to consider what to do with your work status. Do talk with your medical team. I am hearing a strong woman, "tough" who has always done what she could throughout this cancer journey. ds
Question:  #40 4/20/2009		Q:	I was diagnosed in 1998 with invasive lobular cancer with spread to the lymph nodes. I underwent a mastectomy, 6 months of chemo and six weeks of radiation. All was fne until fall of 2002, when mets were discovered in my lumbar spine. Went on Femara and five years of zometa. Zometa halted in March 2008 when osteonecrosis was discovered. Tumor markers began climbing in December and a PET scan in March showed new mets to thoracic spine and a small spot on my left lung. Two CT biopsies later, there is still no indication of what the lung node is and my right hip has decided to go out on me. Xrays of the back and pelvic area show arthritis, but no spread beyond what was noted on the PET scan. I am cringing in terror. While my oncologist has treated me for eight years, he seems slow now in dealing with these issues. Should I be overly worried?
		A:	Has he switched up your hormonal therapies since these new areas popped up? I think if you have concerns, getting a 2nd opinion is always a good idea.
Question:  #41 4/20/2009		Q:	I had a BMT in 1981 for AML (Leukemia) I was started on Loestrin 1.5/30 in 11/84 and had been on it until my BC dx in 10/07. Lft Bst 2cm, Stage2/Grd2, ER+,PR-,HER2+++, Carbo/Toxaterex4, Bilatr w/Exp/Silic. I am not on Arimidex and cannot take Herceptin due to heart damage from Adremycin in 1981. I had one Dr tell me it would be OK to go back on Loestrin and another Dr says no. What are your thoughts? It is a low dose. Also I never had a PET Scan. Should I tell my Onc I want one. I have been having right leg numbness/tingling/feet and hip pain etc. Would that scan detect any mets bone etc. Thank you so much for your time.
		A:	Hi. I would absolutely not recommend any estrogen therapy of any kind. It could potentially stimulate breast cancer growth no matter how low the dose. Also, if you cannot receive Herceptin, you should ask your doctors about Tykerb, a newer pill drug that also attacks HER2 positive breast cancers. Hope that helped.
Question:  #42 4/20/2009		Q:	hello,i would like to ask about dental procedures during zometa treatment.is there a recommended period before and after zometa when its more safe for such procedure to be done?
		A:	Not 100% sure since this is a relatively recently recognized complication, but likely waiting several weeks on both ends to play it safe would be reasonable. I would consult with your doctors prior to any of this.
Question:  #43 4/20/2009		Q:	dear lillie more than a year ago my mother was diagnosed with MBC to bones and lung,she received navelbine and herceptin and zometa. after completing one year with clinical improvement ,her scheduled pet-scan showed what was interpreted as progression (increased uptake of certain spots with new uptake of axillary lymph nodes),she switched to gemzar and tykerb,after completing 4cycles of gemzar(d 1 and 8 every 3 wks),without clinical progression,her oncologist decided to give her a break of gemzar for a month before her next pet-scan . could tykerb be stopped or used alone?, i have another question please about the role of walnut in breast cancer ,does it have any benefit ? thank you
		A:	Generally speaking Tykerb has only been used with chemo and in particular with xeloda. That doesn't mean in couldn't work with other chemos or alone, but it just hasn't been studied as well. Don't know anything credible regarding walmuts and breast cancer, but I wouldn't bother with it as I doubt it has any true benefit. Best
Question:  #44 4/20/2009		Q:	My 56-yearold wife was Stage IV at diagnosis in mid-February, with a single met on her femur. Her breast cancer was described as aggressive. My wife is ER+, PR-, HER-. She had a lumpectomy with 15 nodes removed, 8 were cancerous. One oncologist has put her on Arimidex, with a plan to start Zometa. Another is advocating a more aggressive chemo regimen (with cytoxan). Is there any way of knowing if the benefits of chemo will outweight the costs? I had heard that you have an e-consult service available, if we have records forwarded? She is probably not up to traveling, as she is just getting over pneumonia. Thank you for your consideration.
		A:	Hi. This is Ben Park MDPhD and Lillie referred your question to me. I also do the e-consults which you are referring to. Your question is a tough one and one we (our breast group) always discuss. Single site or oligo metastatic disease is difficult as one could approach either a more conservative approach such as what was recommended, or make the case to be very aggressive, knowing that we don't know whether this will truly confer any benefit. If you'd like, please email me directly at bpark2@jhmi.edu and I will see what I can do. Best, Ben
Question:  #45 4/20/2009		Q:	Is Lymphangitic Carcinomatosis ever found early? If so what test our used?
		A:	It is not something we commonly screen for, but can be found "early" meaning at the time of diagnosis. There is no one specific test that is used, but several different imaging tests can detect cancer in the lymphatics depending on the clinical situation.
Question:  #46 4/20/2009		Q:	My dear friend had a lumpectomy for lobular cancer 7 years ago. She had radiation & took Tamoxofin. She had recurrence in the same breast 1.5 years ago and a mastectomy was done. She had a grand mal seizure 6 months ago and a small tumor was found pressing on a nerve in her brain. Pinpoint radiation was done & it is felt that the most recent MRI reveals the tumor has not fully been affected. It has been recommended to go into the brain & remove the right frontal lobe immediately. My question is, is removing the frontal lobe extreme, will it changer her personality and what is her prognosis for survival with no other metastasis found.
		A:	It may affect her personality and it is unclear whether this is truly going to affect her prognosis. In such an extreme case, I would definitely recommend a 2nd opinion, as there are other options, that are not as aggressive. Best wishes to you and your friend.
Question:  #47 4/13/2009		Q:	dearest lillie are there any released results of clinical trial NCT00244933 concerning genistein\gemzar combination in MBC THANK YOU
		A:	None that I am aware of. But even if there are, this particular trial is a small single institution PHase II trial meaning that the results cannot be interpreted as definitive. If positive results are seen, this would launch a larger blinded, multiinstitutional, randomized trial to definitively address this regimen's effectiveness.
Question:  #48 4/11/2009		Q:	47 year old. Diagnosed with metastatic breast cancer Oct 2006. Original dx was in 2000. ER+ PR+ HER-. Mets to liver & bone. Did Gemzar & Carbo for approximately 2 years with great results. In January 2009, progression. Started Taxol & Avastin. Took for 3 months with no results. CT showed more liver mets, continued bone mets,and also "small bil pleural effusions, lymphatic mets cannot be ruled out". Quality of life is good. No physical complaints. Tumor markers range from 40''s to 50''s. Oncologist recommended a clinical trial. I just wonder if I should do the clinical trial or if there are other medicines I should try first? Would I benefit from a second opinion or possibly going to a larger cancer center? Can a larger center give me more treatment options?
		A:	a larger center, like an NCI comprehensive cancer center, may be able to offer you more options. sure is worth pursuing. discussions regarding clinical trials are worthy of your time as well. remember that the trials are intended to provide you either treatment that is available now or a treatment that is considered as good as and possibly better, thus the purpose of the study. being hormone receptor positive, i wonder if there are still any opportunities for trying a different hormonal therapy as well.
Question:  #49 4/5/2009		Q:	dearest lillie thank you for answearing my question , i will deffinitely follow your advise ,the problem is i couldnt find vitD suppl.without calcium being added to it(she is currently taking decalcit(500ui vit D,AND 600 MG CALCIUM MONOPHOSPHORICUM) ,IS IT OK TO TAKE CALCIUM,or could you please guide me to an alternative? thank you
		A:	go to Vitamin Shoppe or Vitamin World. they carry it. general drug stores (like CVS and Rite Aid) don't.
Question:  #50 4/5/2009		Q:	Hello, My mother-in-law lives in France where there isn''t much of a Hospice tradition and her doctor (understandably) doesn''t give much info since he has a personal relationship with her and doesn''t want to give up. However this is very difficult for her family who is in the dark. I thought that someone outside the situation could give us an objective opinion. She has tried Xeloda, Navelbine, Taxol (3 times), Gemzar, Doxorubicine, Herceptin but she now has three large tumors (12cm, 6cm, and 4cm) plus many small in her liver and the largest recently blocked her veins requiring five plastic stents. The Dr still talks about going back on Doxorubicine but it has been two weeks since the stents went in with little or no improvement. She is still jaundiced (a little less), very dark urine, very low blood pressure, sleeps most of the time, her stools improved though. Five stents seems like so many- in your experience, should she be improving more quickly? Could this also be renal failure? I read that plastic stents are used when the life expectancy is less than three months. She doesn''t seem to be in too much pain just incredibly weak. We feel helpless and would like to know what usually happens, even if it might not be the same with her. Thank you for your help.
		A:	oh my. what you are describing is someone who is what we call "end stage disease." she is very very ill and probably is not going to survive very much longer. sometimes it is hard for the doctor to say it and harder for the patient to ask it so everyone keeps on with treatment unknowing that this isn't probably the best way to spend her remaining time. what quality of life can be captured should be the focus now. i'm glad to hear she isn't in a great deal of pain. time for a family meeting to discuss this frankly and openly. very important that her wishes are known and her affairs in order.
Question:  #51 4/5/2009		Q:	I was diagnosis with stage II bc in 01/03. I had a lumpectomy follwed by chemo and radiation. I took tamoxifen for 2 yrs and was changed to aromasin. I took aromasin until 04/08. In 01/09 I experienced severe difficulty breathing and had 2.5 liters of fluid drained from lung. The biospy indicated cancer. I had PET done in 02/09 which indicated that my upper back, spine and hip area were involved. I was immediately put back on aromasina d had 14 radiation treatments to the hip area.I have had 2 zometia infusion. Nothing has been explained to me regarding the treatment and no addtional treatment has been suggested. I still have occassional lower back pain and have been prescribed hydrocone 10-500. On my last visit I had to remind my ocon that I was suppose to take the zometia. Is this appropriate treatment. Do I need a 2nd opinion?
		A:	getting a second opinion may be beneficial. you are dealing with stage IV breast cancer as you know. check to see of hormone receptors were specifically done on the sites where the disease has spread. sometimes they become the opposite of what they were originally in the breast tumor itself. sometimes too hormonal therapy works for a while then doesn't any more. so see about getting a second opinion with a medical oncologist as well as a radiation oncologist. take care... LS
Question:  #52 4/5/2009		Q:	Hello Dr. Shockney I was set to come your way last year but then learned not a met to liver. My question today is I have had rib soreness since December 2007 while undergoing ACT neoadjuvant. I was diagnosed in Nov 2007. I had a clear bone scan Nov 2007. Had another bone scan May 2008 - clear. CT of bone clear June 2008. The feeling is the same - comes and goes never gotten worse sometimes gone for weeks. But If I poke there, it doesn''t feel comfortable. I have a TE in and it is really filled with surgery for exahcnge coming next month. I was 5cm ILC 1 node of 12 with micro mets. Nothing ever noted node wise before surgery via MRI times 2. Feel 100% back at work running etc. apart from this which scares me senseless. Is it bone scan time again? or if I have the exact same feelings and been tested even 6 months after getting symtomatic, but come up clean, might it be just well TE and usual aches. thank you for this service.
		A:	one thing that we know about bone mets is that it doesn't come and go. it comes and stays. so having pain that comes and goes is actually a good sign that the probability of it being mets is low. ask about tumor markers being done. also, TE can cause aches and pains in the chest/rib area. I'm assuming you have had radiation to chest wall also? with tumor of 5cms, that is usually done. this can cause ribs to ache for a long time. if radiation was done, sometimes implants and radiation don't agree with one another, making the implant to get hardened. if that happens, you still would be a candidate for diep flap reconstruction. hope that helps... LS
Question:  #53 4/5/2009		Q:	Hello and as always thank you for your thoughts. Oct. 2007, Dx St2/Grd2 ER+.PR-,HER2+,lft Brst 2cm w 2+ nodes out of 8. Carbo/Toxatere X 4, then had bilat Mast with Expndrs/Silicone in July 2008. Had AML with a BMT in 1981. I have been experiencing some unsteadiness, tingling, numbness in feet and funny feeling right leg. More so on my right side. Bumping into things etc. Also my thought process is awful. I will reverse words, stumble on them. Misplacing things. This has been going on now about 5 weeks or more. I am 48 years old. Had Brain MRI 3/19/09 which was norm. Onc ref me to Neur and he said I have minimal neuropothy and if I feel it''s getting worse call him. My CEA Marker has been going up, it is now 3.0 My B12 is low so I just had my second shot. I will be having the B12 shot weekly. I never had a PET scan. I am wondering if any other tests should be done. The Neur Dr. mentioned a Spinal Tap, but can they see something on the spine with another test. If so, are the symptoms I have been having related to a spine mets or bone.
		A:	spinal tap is the next logical step actually. to rule out there being breast cancer cells in the spinal fluid. even with a negative imaging of brain there can be central nervous system effected by having breast cancer cells in the cerebral spinal fluid. pursue it. also ask if they plan to use herceptin for you or not. if you've had herceptin in the past, then ask about lapatinib.LS
Question:  #54 4/4/2009		Q:	I have advanced mets to chest, neck, liver. I had a solitary brain met Oct. 2007. I had whole brain radiation. I believe I am experiencing the long term effects of it now. I went blind in Oct. 2008. Now I have restless leg or something....severe leg pain. I am also having trouble urinating...go long time without even though I have urges. Constipation a problem too. Just starting oxycotin for leg pain. I was taking Requip and Flexeril, which I still take at times. I am very weak. I sleep the biggest part of the day. It is a chore and a challenge for me to leave the house. I go for bloodwork one week after chemo (Ixempra). It''s almost more than I can do. Liver still functioning ok, although ALP 336. On my last scan white matter in brain mentioned along with something about Lewy Body. I probably show signs of dementia....definitely confused, disoriented, etc. although I am blind.( Is it cancer, medication, or whole brain radiation effects??? I was wondering whether effects of WB radiation can cause death? Or if it will be when cancer progresses more and liver won''t work? I have no quality of life, sleep all day, managing pain.. But first scan after being on Ixempra a very slight response (reduction of SUV values...not decease in size)and I guess liver still functioning okay. Just keep wondering how this will progress. Any information would be welcome. Thank you.
		A:	I'm sorry to hear that things seem to be progressing. how awful to not have quality of life at this point as well. WB radiation can effect thought processes. it is hard though to determine if it is the cancer or the radiation that causes these symptoms. it does sound like your health is slowly dwindling away. i hope that you are not alone at home and have engaged the services of hospice for support. no one is meant to go through this type of journey alone. Regarding the brain, if the brain stem becomes involved with cancer the death can happen quite suddenly. brain stem controls your breathing and heart. so ask the doctor exactly where the brain mets are located. you remain on my prayer list and have been on it for some time now. take care.... LS
Question:  #55 4/4/2009		Q:	dear lillie my mother has been diagnosed with MBC to bone and lungs,her serum vit D IS 25(THE LAB NORMAL RANGE IS ABOVE 20),SHE IS TAKING 500 UI SUPPLEMENT OF VIT D3,IS SHE CONSIDERED VIT D DEFFICIENT AND IF SO ,WHAT SHOULD I DO TO HELP INCREASING ITS LEVEL THANK YOU
		A:	sorry to hear she is dealing with mets. bumping up the vit D3 to 2000 IUs is commonly recommended along with at least 20 minutes of sunshine outside each day. LS
Question:  #56 3/29/2009		Q:	Thank you so much for this forum, where questions which nag at us and haunt us can be answered, in a sensitive straight-forward manner. I truly appreciate it. My mother is 80 years old and was diagnosed with a recurrence of her breast cancer about 17 months ago, with mets to the bones and lung at that time. She decided against aggressive treatment, choosing quality of life over quantity. She has accepted two radiation treatments for pain control, which were very helpful. Bone mets in Jan. in multiple locations in her spine, pelvic bones, ribs, arms, and shoulder. I live 700 miles away, and she has requested that I do not come to stay with her until she decides it is necessary. I think that is part of her method of coping, and I am trying to respect her wishes (I am an only child and I think this is her need to still mother me and protect me.) She will not give authorization to her doctors for me to speak with them, I believe for the same reasons. She is a fiercely independent woman and always has been, which is an identity that she still clings to and takes comfort from. So I am listening intently to her symptoms and trying to guess where things stand. I know she has lost a lot of weight, and she admits that she sleeps a lot. However, she still manages to care for herself, and drive, and do her own shopping, etc.,(although a 20 minute trip to the store tires her out for the next couple of days). She does have a constant problem with constipation, but denies any problems with urination at present. She says she just feels weak. I do notice that she is forgetting things a lot more frequently, repeating herself, and not remembering discussions we have recently had. Nothing dramatic, but far worse that it has ever been. I talk to her by phone every day. She is not going to allow me to learn about her condition in a direct manner - can you give me some things to watch for, or ask her to learn more about where we are in her battle. I don''t know want to upset her by going there when her pride isn''t ready, but I also don''t want to wait too long. She flatly refuses hospice - won''t even all me to discuss it. Thank you so much for any advice you can give.
		A:	What a challenge for you-- being so far away. She does sound like a very independent person who doesn't want to burden others, especially her only child. That said, her age alone is concerning, even unrelated to cancer since she is getting up in years now. I'm saddened to hear she is refusing hospice- a valuable program that strives to ensure quality of life is maintained while getting closure with life to die with dignity and with minimal pain. Her constipation may be related to possibly taking pain meds. certainly she needs to keep pain in control but might want to add a stool softener (like colace) available over the counter. mention this to her. Her tiredness ad weight loss are signals of progression of disease. she and you need to be watchful for shortness of breath, abdominal swelling, fluid retention in her legs, urine getting darker, loss of appetite (food doesn't interest the patient and when eating food seems to taste like paper). Though she may not be ready for you to be with her full time, it would be good to do some spot checking-- a weekend visit perhaps over Easter. this will help you further assess her. if she uses email, consider setting up a camera so you two can see each other while you chat. Does she have reliable neighbors to help her? she will grow more tired and sleep more and more as time progresses. you may be looking at a few months of time remaining for her. Does she have her affairs in order?? if not, this should happen now. what are her wishes regarding life support for example. this needs to be included in an Advance Directive. consider getting her the book 100 questions and answers about metastatic breast cancer. i'm the author. i think it may be helpful to you both. take care.... LS
Question:  #57 3/9/2009		Q:	Hello and thank you taking time to answer my ?. In Feb 004, I was daignosed with Stage III breast cancer. Had my left breast and 31 positive lymph nodes removed from under my left arm. Had 6 months of chemo and radiation. Then, in Nov, 2005, cancer had spread to my neck. I did not have chemo again as I was still very weak from first time. There are no signs of cancer at this time. I have been taking aromasin for approimately two years. Now, due to extreme digestive issues, my upper GI doc and my oncologist are telling me that I should discontinue the aromasin. My research indicates that I should take the aromasin until seven years have passed. That puzzles me and also lets in lots of fear. I am 60 years old and am wondering if perhaps my body no longer makes estrogen and therefore, may not need the aromasin. I have had a complete hysterectomy. Thank you for your advise...I''m very confused also, have very low blood pressure of 90/65 and low white blood cell count. Feel very tired and concerned.
		A:	Not entirely sure why your doctors feel to stop aromasin for digestive issues, but there are other hormone alternatives. And even at age 60, your body still produces estrogens made by aromatase, which is why aromatase inhibitors only work in postmenopausal women, or women who have their ovaries medically suppressed. I would recommend you talk with your doctors again to precisely understand why they feel you should stop the aromasin and ask about other hormone therapies.
Question:  #58 3/9/2009		Q:	Hi Lillie. I was diagnosed at age 40 in 2006 (4/20 nodes, ERpositive, PR and HER2 negative, grade 3, multicentric tumours) and then with an axillary and internal mammary node recurrence in 2007. After being re-diagnosed, I was put on zoladex and arimidex, which worked immediately. But then about 5 months later the axillary tumour started growing again, so they suggested an ooph, which I had. Once again the tumour shrank, but then began growing rapidly again less than 2 months later (they can''t see the internal mammary node anymore, which is good news). Now they''ve just put me on aromasin (the cancer is still ER+) and are contemplating radiating the axilla, as the tumour is almost in my arm and not the area radiated during my initial treatment. I''m having such a hard time trying to understand and figure out a way to think of my situation. Do you think it''s possible that I might actually be "cured"? Even if the aromasin doesn''t work either long or short term, the radiation could possibly get rid of the problem. Or is this wishful thinking? Do you know of any patients who were basically cured given a similar scenario? I find it comforting that the cancer hasn''t spread elsewhere since my re-diagnosis, but do you think it''s inevitable it will? Sometimes I feel as if I have a "serious" illness just because I have cancer, but then sometimes it seems almost trivial. The doctors don''t say much in a general kind of way - is that because they don''t really know? I''m sorry if my question seems vague, but I guess this is where I''m at. Thanks for responding.
		A:	A difficult situation as there is no right or wrong obviously. I think radiation or even possibly surgery may be an option, but would advocate seeking a 2nd opinion at a major academic cancer center. Best of luck!
Question:  #59 3/9/2009		Q:	Hello my wife Lynne was diagnosed with IBC 06/07. 06/07-- IBC IDC triple negative grade 3 stage 3b auxiliary nodes positive. Left side. We hit it very very hard three rounds of 12-week chemo, high dose radiation in the entire auxiliary area, then a radical mastectomy 12/07,, one of the 12-week chemo’s (carbo/taxol) was after the surgery with NED. In Jan 09 Lynne found a lump under the arm (same arm that had the nodes removed and high dose radiation). It turned out to be grade 3 consistent with IDC. They also found two nodules in her right lung then the surgeons halted and we got the feeling they were washing their hands of the case saying chemo is the treatment now. I forced them to remove the arm tumor it turned out to be easy to remove and was isolated to soft tissue (no nodes, is this good bad or meaningless?) Grade 3 consistent with IDC extensive cancer cells. They agreed to biopsy the lung, after two CT guided attempts one succeeded however it was negative. Since the surgeons did not believe the results I convinced them to have a thoracic surgeon remove both nodules. The nodules were just removed with clear margins however they were looked at during surgery and stated to be both cancer. I had them reinstall her port (it was removed in December) and Lynne will start Avastin/Taxotere in a few weeks. I am trying to determine how important it is to track the cancer from this point forward? We know its now metastasis, is there justification for constant brain, bone, CT with contrast, PETs ? Lynne has been a trooper doing what and when she has been ordered to do for the past two years. Mentally it may not be advantageous to know about every lesion that is going to pop up? Should we only react now to symptomatic issues? On a last note it is truly pathetic how little the medical community knows about IBC Triple Negative. In many cases I go into a meeting as the expert. Thank you, Lynne and Paul
		A:	Dear Lynne and Paul, I'm very sorry to hear about this. In general, once cancer has spread to distant sites, ie metastatic disease, it is no longer curable. The cancer can still be treated, and sometimes effectively, but unfortunately, triple negative cancers are not amenable to some of the best drugs ie hormone therapy and anti-HER2 therapies, leaving chemo (and now Avastin) as the only options. There really isn't value in multiple scannings at short intervals as it has never been conclusively demonstrated that catching disease and treating earlier will necessarily affect overall survival. Even Taxol/Avastin does not improve overall survival compared to Taxol alone, though better disease control can be achieved for about 4 months on average. The bottomline is that this is a very aggressive disease and treating it makes sense; but please do keep in mind that the goal of therapy is not curative, and that balancing toxicity with chance of benefit has to remain of paramount importance.
Question:  #60 3/9/2009		Q:	I have vey advanced breast mets to liver, etc. I am on Ixempra (6th line), Ativan, Ibuprophen, Requip, and Flexeril. Is that enough to make me sleep so much of the day - or is it the cancer?
		A:	Could be either or both. Impossible to tell, but it's possible to change up your medicines to see if that helps.