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Category:

Hormonal Therapy

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Question:  #1 11/15/2009		Q:	Thank you for being there for me during the last five years. I have been off Aromasin for about a month now. How long will it take before it is no longer affecting my cholestrol levels,libido and metabolism. I can''t wait to be able to return to a healthier weight and cholestrol level. Do you have any suggestions in terms of a diet and exercise program to lose the weight I gained despite all my effforts.
		A:	good for you. give it 3 months of being off. weight loss-- Curves. Diet-- less than 30 grams of fat intake a day. be well. L
Question:  #2 11/15/2009		Q:	I was diagnosed with peripheral neuropathy 5 years ago at the onset of perimenopause. Once I started HRT( Estrogen and Prometrium) I was without symptoms for the remainder of the time. I was diagnosed with DCIS in one breast and had a double mastectomy in August of this year. On the advice of one of my Doctors I reduced my patch to .0225. The neuropathy came roaring back. If I get my ovaries and uterus removed- can I reduce my risk with estrogen only therapy? Is it likely I could get an oncologist to support this course of action?
		A:	it may be tough to find a medical oncologist willing to do this. possible but you might have to see several. the time of DCIS and the size of it will factor into the doctor's decision too. family medical history as well and your age, grade of the DCIS. remember too we store estrogen in your body fat and our adrenal glands still make estrogen after the ovaries are gone.
Question:  #3 11/16/2009		Q:	My tumour was >90% positive for oestrogen and progesterone, HER2 negative. My oncotype score was 3, so have had radiation and have been on Tamoxifen for 8months now. I was perimenopausal before starting tamoxifen and did not have a period for the first 5 months,since then I have have had 2 periods. My oestradiol and progesterone levels are both high. I read somewhere that it is known that tamoxifen can raise oestrogen levels, but what about progesterone? Does tamoxifen interfere with the progesterone receptors in the same way it does for oestrogen? Should I be considering some other form of treatment to lower my hormone levels? I would be grateful for any advice. Thanks.
		A:	Tamoxifen can cause increases in estrogen and likely progesterone, though I am not aware of any definitive data for progesterone. Given what we know now, being on tamoxifen for five years is still standard of care for the treatment of your type of breast cancer. There are some clinical trials looking at adding ovarian suppression to tamoxifen vs. ovarian supression with an aromatase inhibitor vs. tamoxifen alone, but we don't have any data on this as of yet. I would stick to what you are on now and/or ask your oncologist about a clinical trial such as the one mentioned above.
Question:  #4 11/7/2009		Q:	When on tamoxifen, what is the typical onset time of joint pain? I have been on tamoxifen for four years now and am beginning to experience bilateral hip pain. I had stage 1 IDC diagnosed at age 47. Thanks for your time.
		A:	tamoxifen doesn't usually cause joint pain. aromatase inhibitors do. and clearly you have been on it long enough that whatever side effects you were going to get should have happened 3 and a hal years ago. so contact your doctor and get seen.
Question:  #5 11/1/2009		Q:	I was recently diagnosed with DCIS, grade 3, and had a bi-lateral mastectomy. My SNB (0/2) was node negative, but the pathology report showed a single focus micro invasion of 1 mm (pT1mic), grade 2. The closest margin from the IDC was 2 cm. I am ER+ 10%, PR+ 5%, and Her2+++. The 2008 MD Anderson study, suggesting chemo and Herceptin for Her2neu tumors less than 1 cm, does not include pT1mic. My oncologist suggests Tamoxifen only. I wonder if skipping the chemo and Herceptin is wise, or if perhaps adding Zometa to the Tamoxifen would be a good compromise. I am 40 years old and have 2 little kids. Should I be more aggressive with treatment, or do you think the risks outweigh the benefits??
		A:	Hi Amy, This is Ben Park one of the medical oncologists here at Hopkins and Lillie forwarded me your question. YOur case is complex and definitely would benefit from a 2nd opinion. Here at Hopkins for a HER2 positive (3+) tumor, we would strongly consider treating you with chemo and Herceptin, particularly because your ER/PR status is not that high. There is no long term data on Zometa in this setting only 4 year follow up from the ABCSG12 trial and you do not fit these criteria, thus this isn't really a consideration for you (and largely shouldn't be for anyone yet as the data are too early and we only have that one study for now). Also, if you haven't been told, you should seek genetic counseling regarding BRCA testing. If you'd like to set up an appointment to go over your case, please let me know at bpark2@jhmi.edu. Best regards.
Question:  #6 10/18/2009		Q:	I''ve been on Arimidex for 2 or 3 months. I am now having frequent (almost daily) headaches. I thought they were stress-related because of some serious family issues during this same 2-3 month period, but now realized they may be a result of the Arimidex. I had frequent headaches from puberty until I went through menopause. Could these headaches be related to Arimidex and if so, will I probably have them for the next 5 years?
		A:	Unclear but the timing may point to this. Ask your oncologist his/her opinion and whether it is worth changing to a different class of aromatase inhibitors (aromasin which is steroidal; arimidex and femara are non-steroidal) as some women have different side effects with different AI's, especially between the two different classes. Tamoxifen is still a great drug to consider as well. Best wishes!
Question:  #7 10/18/2009		Q:	Hi, On Arimidex for 2 years now and notice that my eyelashes are thinning and see alot more strands of hair falling out, is this normal?
		A:	when a woman goes through natural menopause these same things usually happen but more gradually, and are due to estrogen loss. the same thing happens or can happen when taking an AI.
Question:  #8 10/18/2009		Q:	I was in such rush because I finally get to ask my questions after months of waiting...forgot in my above question to say my tumor was 1.7 cm Grade 2.
		A:	I figured it was somewhere between 1.5 and 2.o cm since you did mention T1C. Oncotype mostly trumps Grade these days, so less important in your case since oncotype was performed.
Question:  #9 10/18/2009		Q:	YaY! I have been trying for months to catch this site open for questions. I always miss it. Thank you so much for this service you provide. I have learned so much. My Estradiol level is 32, Serum Estrone 38, Testosterone 33, Progesterone 0.4. I have been postmenopausal for 10 years and had prophylactic Hysty/Ooph July 09 following my DBL Mast for IDC in one breast T1c, NO, MO, 0/5 nodes, clean margins 50mm, Moderately Differentiated, Grade 2 ER+, PR+, Her2-, Oncotype DX 0% local recurrence, 3% distant recurrence. What do you think my over all risk of recurrence is? How much % risk reduction would Tamox or an AI give me? Can I get enough benefit from avoiding all estrogens and overdosing on natural aromatase inhibitors like apples and cammomile tea. I am drinking Brassica tea every day. Do I also need to eat Brocco sprouts everyday?
		A:	You pose very thoughtful questions. Given what you told me, it is likely that you are cured by surgery alone, HOWEVER, you still qualify for and could benefit from five years of hormonal therapy. Here in the states, we prefer to start with 5 years of an aromatase inhibitor, though 5 years of tamoxifen is also a great regimen. Remember that the oncotype recurrence scores and risk of recurrence assume you will be on five years of tamoxifen/hormonal therapy so not doing that makes those percentages uncertain. No strong study on broccoli or tea yet, but maybe someday. For now, everything in moderation in terms of diet. Thanks!
Question:  #10 10/17/2009		Q:	Is there any reason not to take tamoxifen concurrently with radiation? My oncologist left the choice up to me. From what I''ve read, most people begin tamoxifen after completing radiation. Is there a benefit to begin early or to wait?
		A:	no problem in doing it with radiation. traditionally phases of treatment were always kept "clean" and just one modality of treatment was done at one time. times have changed though. if your doctors are okay with it, then it should be fine and as i mentioned becoming more common today.
Question:  #11 9/5/2009		Q:	HI, I hope this question is in the right category. 3 years ago I was diagnosed with DCIS (ER/PR+) with no node involvement. Now I am in menopause and suffering from frequent urination (3-5X night) and painful intercourse. I have tried every OAB drug and personal lubricant on the market and nothing helps. My OB/GYN has suggested Vagifem (which contains an estrogen compound) to address this. He knows my history of BC and claims it doesn''t get into the blood, only addresses vaginal/urinary tissue, therefore is safe. I''ve read the patient pamphlet that warns against this for cancer patients. Is there any way I can find out if this is truly safe? Do you have a opinion? Thanks for all you do!!
		A:	there is a low amount of estrogen that gets into the blood stream. very low. I'm assuming you are on tamoxifen for prevention and this is what has caused the vaginal dryness and other symptoms. that said, your doctor is looking at quality of life and weighing the pros and cons. consider a second opinion to give you peace of mind but the recommendation is not unusual for someone several years out from treatment for dcis.
Question:  #12 8/30/2009		Q:	I was dx 12/06 (age 48) with grade 2, stage 2B invasive ductal breast cancer, 3 of 21 nodes positive, 6 separate cancers in 4 quadrants with largest being 2.5cm, premenopausal. Treatment: bilateral mastectomies, chemo- 4/ac and 4/taxol dose dense, and so far 2 years and 2 months of tamoxifen. So far so good! My doctors plan to test my hormone levels this week with the plan to possibly switch to an aromase inhibitor if I am now post menopausal. **Do you agree with this plan and what is the best one to be on? FYI- I have osteoporosis in my spin and osteopenia in my hips. I am also on IV Zometa every 6 months for bone health and because I have a possible fibrous dysplasia area in my humerus- which has had no sign of change in 20 months(stable so doesn''t suggest a possible cancer area), should this continue? Thanks so much.
		A:	good for you for passing the 2 year mark when risk of recurrence is at its highest and now you are nearing the 3 year mark! one study shows benefit of switching from tamoxifen to femara. ask your doctor though to review with you how he/she went about selecting the aromatase inhibitor of choice for your situation. be well... L
Question:  #13 8/29/2009		Q:	Hi-Thank you for this service. I was dxed with stage 1 IDC, 90% estrogen and 80% progestron positive, no (+) nodes in 2004. I have been on Aromasin for 4 years and 7 months. I want to stop now because I have been gaining too much weight in my mid-section and can''t lose it. I feel powerless over this and the medication has raised my cholestrol to 270. In your opinion, will 5 months make that much of a difference? Will I regret it?
		A:	sounds like you had a very favorable type and stage of breast cancer. it's reasonable to call your medical oncologist and ask him if he will approve you stopping early, given it is causing you other health issues that warrant attention.
Question:  #14 8/29/2009		Q:	Dearest Lillie-With regard to hormonal therapy, 1)why is five years considered the standard amount of time to take the AI''s? ?Why would it not be beneficial to continue taking them beyond five years. 2) Which study is presently looking at the possible benefit of longer (than 5 year) hormonal therapy?
		A:	the studies that have been done and released show that 5 years seems to be optimal for now. remember that risk of recurrence is greatest during the first 2 years after treatment too. there are more studies being done to determine if 10 years is better. go to www.pubmed.com and use the search feature to learn more about this research work. let me also mention for readers here that tamoxifen is not recommended to take for more than 5 years. it was tested for a longer period and found to not only be of little value extending it but also the risks of blood clots and uterine cancer increased more after the 5 year mark. L
Question:  #15 8/29/2009		Q:	DEAR LILLIE MY MOTHER HAS ER-PR NEG ,HER-2 +3 ,METASTATIC BREAST CANCER AFTER SEEKING ANOTHER OPINION,I WAS TOLD THAT HER DISEASE BEHAVIOUR IS MORE IN KEEPING WITH A HORMONE SENSITIVE BREAST CANCER,ALTHOUGH HER HORMONAL STATUS WAS ASSESSED IN THREE LABS IN THE PRIMARY TUMOR , AND WAS REASSESSED ONCE AGAIN ON A BONE BIOPSY AFTER THE DEVELOPMENT OF METS, IS THRE A POSSIBILITY THAT THERE IS A MISTAKE AND HOW TO BE SURE? THANK YOU
		A:	sorry to hear she is dealing with the met BC. having had 3 labs look at it you have to at some point believe it is correct. i am glad to hear they checked tissue where mets is as well. that's important to do nowadays.
Question:  #16 8/16/2009		Q:	Hi Lillie I am scheduled to take zometa tomorrow for osteoporosis caused by chemoinducede menopause 2 years of tam and one year of femara, now NED. Should I take calcium and vitamine D tomorrow morrning? How many days should I increase my the water intake? Could I take One Alpha for vitamine D3 along with the zometa. My Onc wants me to take it twice a year even when the Z-Fast is not yet complete is that ok. Thanks soooooooo much.
		A:	usually women do continue to take calcium and vit D while taking zometa or other osteporosis fighting drugs. 3 days of increased water usually but double check that with your doctor. not sure about alpha question though. take care... L
Question:  #17 8/9/2009		Q:	Hi Lillie, thanks for all the information you give. I am now on my last medication. Aromasin. I''ve taken Arimidex which caused carpal tunnel in both hands. Femara which caused arthritis in my finger joints (nodules formed) and now I''m trying Aromasin for the past two weeks. My OncotypeDX indicated 5% recurrence. I asked my doctor what benefit percentage wise I was getting taking one of the above drugs and he said about 4%. I said 4% doesn''t seem like much having to go through the side effects of these drugs. Also I read that Aromasin can cause glaucoma. I''ll be seeing my eye doctor in 2 weeks and will check with him. Are you aware any of the above drugs causing such problems. Thanks.
		A:	what you are describing are typicl side effects (with the exception of the glaucoma which is rare but can happen.) so sounds like you are weighing the pros and cons of taking an aromatase inhibitor compared to its benefit in prevention of recurrence. all logical steps to take and discuss further with your oncologist. hang in.
Question:  #18 8/8/2009		Q:	Hi Lillie, Not sure if I am posting this under the right category, but here is my question. I am nearly 3 years out from stage 1, triple+ BC, MRM, 16 nodes taken, have developed mild lymphedema in right hand. Did chemo, 1 year Herceptin, have been on Tamoxifen for 2 years, Effexor XR 75 mg. for 2 years for hot flashes and anxiety. During the last 2 -3 months I have gained nearly 20 lbs. - no change to my eating habits, but I have been diagnosed with fibromyalgia, so exercising is more difficult. I did try to walk 30 minutes 3X/week, but I don''t think that stopping that could cause such a big weight gain in such a short amount of time. My metabolism has always been bad, and I was premenopausal when I started this jouney at age 48. I''m nearly 51 now. My GP has tested my for thyroid, diabetes etc.- everything is clear. Any ideas on why this could have happened and what to do. Thanks
		A:	sounds like your metabolism has made a shift as well as your inability to exercise as much. we underestimate the influence of daily exercise, especially active walking, does to keep our weight in check. so the alternative for you at this time will need to be a low fat diet. less than 30grams a day. give it a try. L
Question:  #19 8/3/2009		Q:	I finished a five-year course of Tamoxifen the third week of June and now my hair is thinning/falling out. It looks as if my hairline is receding as well. I don''t have bald spots, it is an overall thinning. I had no hair loss while actually on Tamoxifen, which was used for prevention following a diagnosis of intraductal atypical hyperplasia (with a sister having had breast cancer), so there was no chemotherapy. What could be happening here? Thank You! Kathy Van Arsdel
		A:	Tamoxifen can act as an estrogen in some (or most) tissues so it could be that your body is going to a low estrogen state that tamoxifen was masking. This could be temporary, but I would suggest you talk with your oncologist and maybe an endocrinologist as well. Best wishes.
Question:  #20 8/3/2009		Q:	Hi Lillie Had a mod. rad. mast jan06 followed by ACTaxol and rad. for T3 N0 ER+ PR+ Her -. Two years Tam and one year femar Now 49 y/0 with osteoporosis in the spine (T score -3). Onc. wants to put me on Zometa. I see from Z-FAST that the standard does is 4mg every six month. Question Can I request a does of 4mg every 4 month or more frequent to solve to get my bones back to normal quicker. Thanks
		A:	No; I would strongly encourage you to follow your doctor's recommendations. No medicine, including Zometa is without side effects, and giving drugs in non-approved doses can compromise their effectiveness and/or increase side effects. Best wishes.
Question:  #21 7/27/2009		Q:	I was diagnoced with stage IIB, Her 2 + in May 06, surgery, chemo, rad, followed, i am still on tamoxifin. I had a complete hysterectomy Oct 08, still on tamoxifin. Should I still be on tamoxifin or another drug, arimidex manybe? I am 45 yrs old now. Thank you Lisa
		A:	Depends if you are postmenopausal or not. Did they take your ovaries out? Did you achieve "chemopause?" There is also evidence that taking an Aromatase inhibitor for five years AFTER five years of tamoxifen is also beneficial, so maybe that is what your doctor is recommending for you. I would advise you to talk to your doctor about these issues as nowadays there are many different ways to give hormone therapy in your situation. Best wishes.
Question:  #22 7/27/2009		Q:	Hi Lillie, I am currently 50 y/o, at 47 dx with stage 1 ductal ca, lumpectomy, chemo then radiation. Placed on Tamoxifen but LFTs elevated so had oopherectomy and then placed on Aromosin but developed severe bone pain (hands, shoulders) and then switched to Arimidex, intially did better but now having horrible feet and hand pain, especially at night and early am. Is there other "anti-estrogen" therapies with less side effects? thanks for your help!
		A:	There is still one more AI, Femara, that you could try, but generally Arimidex and Femara lead to similar side effects. Worth a shot though.
Question:  #23 7/27/2009		Q:	Next month I will have been on tamoxifen on 2 years. Can it cause you to bruise easily? I will be having the DIEP procedure in September. Thank-you SO MUCH for your many encouraging words to women like me to have reconstruction. Will I need to stop taking tamoxifen prior to the surgery?
		A:	Tamoxifen can sometimes cause easy bruising and yes, in general you should stop tamoxifen 1 to 2 weeks prior to surgery to avoid increasing risk of clots. Best.
Question:  #24 7/27/2009		Q:	Hi Could femara for 1 year cause me to gain 10 pounds. I also wake up very stiff in the morning or after a long drive. Thanks
		A:	Yes possibly, though everyone is a bit different. It does commonly cause bone and joint aches. Best.
Question:  #25 7/27/2009		Q:	HI Lillie After mod. rad. mast right br. for IDC and ILC T3 N0 Her2- ER+ PR+, ACTax + Rad + 2 years Tam + 1 year femara. Age 49 now chemo induced menopose at 46 I have severe ostopenia hip and wrist and definite osteporosis Lumbar spine (BMD droped from .822g/cm before femara to .755 78% of the mean and 2.7 SD below max mean). Is that very bad? Should I stop Femara or take Fosavance? Can I eat flax seeds? sunbath???. Thanks for being always there for us. Hala
		A:	Talk to you doctors about your osteopenia and femara. You may want to discuss being put on a bisphosphonate drug like Zometa that will help strengthen bones. Do not stop the femara without consulting your doctor first! Best wishes.
Question:  #26 7/27/2009		Q:	Hi, I got IDC Stage One at age 39. Mastectomy, radiation, no chemo. I''m been on Tamoxifen since Jan. 2007 (about 2.5 years). At the beginning I got some minor hot flashes and night sweats but they subsided after about 9 months. I continue to have regular periods albeit very light. I''ve suffered no side effects since. However, in the last 3 weeks I have suffered from intense, drenching night sweats every night. I have to rip off my soaked PJ''s (well, just undies) and sometimes sleep on a towel. Is it true cancer is sometimes heralded by night sweats? Is this an ominous sign? Or some late hormonal effect of being on Tamoxifen? I am 42, in great shape, and not menopausal (and evenings are anything but hot up here where I live in Canada...). P.S. Thanks for all your time and devotion to this informative, comforting site.
		A:	Sounds like you may be going through menopause and/or side effects of tamoxifen. Sometimes cancers can cause nightsweats but not so common with breast cancer. I would recommend talking with your doctors as they may able to do tests to determine your menopause status vs. side effects of tamoxifen.
Question:  #27 7/19/2009		Q:	Dear Lillie, I have just started arimidex for stage IIb er pr pos., her neg breast ca...49 years old, just finished ACT which pushed me into menopause (FSH is 50). I had been contemplating oophor., all my idea...docs say it is my choice. GYN is doing brac testing...(mother had breast ca at 72) Anyhow, my concern at this point, is that I could come out of chemo induced menopause, thus causing me to come off of arimidex. My onc will do another FSH on me in August...Both my onc and gyn feel that it is unlikely that, at my age, I will come out of menopause. If this were to happen, would the first sign be getting a period? My main concern is that estrogen levels will rise and I would be forced to go off of arimidex. That was the main reason why I was thinking about ooph, not necessarily fear of ovarian ca. I just wanted to be sure I stayed in menopause! Given all of this, do you think it''s reasonable to just monitor the FSH and hope it stays where it is and not worry too much about this? Thanks again!
		A:	yes, you would begin menstruating again. the sure way as you mentioned to guarantee you remain in menopause is to get the ovaries out.
Question:  #28 7/19/2009		Q:	contacted you previous to completion of five years of arimidex therapy. at that time was curious as to your thoughts on continuing on some other form af harmone therapy..since then have started tamoxifen..after two weeks have whole new set of side effects..especially vaginal discharge..feel like i am at a real crossroads with respect to continuing....at what point do you stop..is it ever going to be easy to stop..oncologist left decision completely up to me...any thoughts now? someone else to consider seeing? does anyone have the answer? thanks for your thoughts
		A:	the length of time to be on hormonal therapy currently is a gray area. there are some thoughts that staying on for 10 years may be beneficial but not all agree. usually it is tamoxifen first though then onto an AI. not vice versa. if your risk of recurrence was low (early stage breast cancer) then your doctor probably will leave it to your decision making about how long you want to do this. remember just 3 years ago you would have only been on tam then stopped anyway. for women with more advanced forms of breast cancer, the length of time may be extended. consider seeing another medical oncologist for a formal second opinion.
Question:  #29 7/13/2009		Q:	I am 47 years old and a year ago have TC therapy for stage IIb breast cancer (tubulolobular carcinoma). My period stopped after the second infusion and as I have been on Tamoxifen for 11 months now with no spotting/bleeding, I assumed that I was firmly in chemo induced emonpause. however, my last blood test showed a serum estradiol level of 550pg/ml. This seems very high. Now I am wondering whether I need follow=up tests to check for ovarian cancer. Thoughts/advice?
		A:	Probably not. Tamoxifen is known to cause increased levels of estradiol and that is probably what is going on. Checking other hormones such as FSH would be helpful in this regard. You may want to see an endocrinologist to get an expert's point of view. However, if you have a family history of breast and ovarian cancers, you may want to talk to someone about genetic counseling and testing for BRCA1 and BRCA2.
Question:  #30 7/6/2009		Q:	Hi, Am Stage 1, grade 2, ER/PR+, 4 "clusters of cells" in one lymph node of 4 removed, OncoDx score 14 - lumpectomy with 7 weeks radiation - have now started Zolodex - one oncologist recommended AI as well - one indicated no significant add''l benefet and Zolodex or oophorectomy would be enough - however after two Zolodex injections still having period....is this an aggressive enough plan - ie not taking AI - would you have the ovaries removed in lieu of the zolodex for 2 years? Thank you!
		A:	Standard of care for a premenopausal woman would be tamoxifen, not ovarian suppression with zolodex, unless you have a compelling reason that you can't take tamoxifen. Adding AI or tamoxifen to zolodex in premenopausal women is still a research question with some recent data from Austria suggesting no difference between the two, though no one got zoldex alone. In this trial, women also got Zometa which appeared to be better at 4 years for reducing recurrence in both groups. I would suggest you seek a 2nd opinion for optimal hormonal treatment of your breast cancer. Best regards.