Questions for those who have considered prophylactic mastectomy
Comments
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Lucky- I always love reading your encouragement.
Herecometsun- My prayers are with you and your family. Even though my BRCA tests came back negative I too have the family cancers. I was also recently diagnosed with LCIS, ADH and papilomatosis. They found the LCIS when they did the lumpectomy to remove two sites of ADH and papilomatosis. I hope to have a bilateral mastectomy sometime this summer. Reading your story and reasons for considering the mastectomy route sound pretty much like the same reasons I am. I have been blessed to have a very high risk but no cancer as of today that the Drs. are aware. I have an appt. with MD oncology surgeon in a couple of weeks. It will be nice when this is all behind me. Let me know if I can do anything for you or your sister. I've been reading a good book called the "Cancer Battle Plan". It focuses on nutrition, exercise, attidtude and etc. Seems like a really good book.
Lois
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Thank you, Lois! Everyone here is so helpful.
Tomorrow I go for my first appointment with the surgeon. I have a long list of questions for her, and hope that by the time I am finished I'll have a better idea of what direction to go in. The last few days, I don't seem to be able to think about it in any kind of logical way.
Many thanks to everyone here. I'll let you know how it goes.
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Okay everyone- I went and spoke to an oncologist surgeon at MD Anderson yesterday and will be doing further genetic testing for a different type of mutant gene (other than the BRCA testing). I will also be meeting with the onc. surgeon along with a plastic surgeon and mental health specialist. The oncologist surgeon said she will probably be able to do the prophylactic double mastectomy with a nipple sparing tecnique. Does anyone have any experience with this? Looking forward to hearing from everyone.
Lois
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Hi Peaches,
What have you finally decided to do? What have your doctors said?
Hi Lucky,
What have you decided to do? What did the surgeons say?
I had ultrasounds and mammograms done at MD Anderson 2 weeks ago and met with one of the oncologist surgeons. I will be going for further genetic testing (BRCA tests came up negative). It seems there are other genetic testing you can do- the one I will be doing is for thyroid nodules and breast cancer. I will also be meeting with a plastic surgeon at MD Anderson and one of their psychiatrists before having surgery. They are also comparing past mammograms with the ones they took since they also found calcifications in the other breast. They may be biopsying some of those.
Let me know what y'all are up to.
Lois
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Hi Lois! Just wanted to share my experience with genetic testing. The genetics counselor said I had a low risk for a BRCA mutation (about as much as the average Ashkenazi woman), but she said it was possible I could have Cowden's syndrome (PTEN, hamartoma syndrome). She gave me a paper on it, and, if you count LCIS as breast cancer, then I fulfilled all the external criteria (including history of thyroid nodule.) If my head was 1 cm larger in circumference, I would have had the macrocephaly symptom. She said she would check when the institution's genetics board met, and they said 'it would be a real stretch' if I had the mutation (in spite of meeting all the physical/external criteria.)
Since I have had several unusual conditions, I thought, well I haven't batted very well so far, I was considering testing. Then I did some more research, and found according to one website, there have been a grand total of 'over 300' people who have EVER, INTERNATIONALLY been diagnosed with this. (At the time I looked in 2006, if I remember correctly there were only 200, though its undoubtedly underdiagnosed.) I thought it was astronomical if I had both LCIS and PTEN, so I have opted not to get tested so far, though I could and pay for it myself.
http://www.emedicine.com/derm/topic86.htm
On my next biopsy, I asked the pathologist to specifically state whether or not whether any hamartoma were seen, and the pathology report said they didn't see any.
I know my experience may not be anything like yours, and your decisions and testing may be vastly different, but I just wanted to share. I thought this genetics counseling was very thorough, as I had never heard of this condition.
Wishing you the best outcome on your testing. -
Hi Leaf,
I will definitely be looking up the syndromes on the internet. I guess if I do it and find out it's positive I will have one more thing to add as to why I'm seriously considering a prophylatic bilateral mastectomy. The onc. surgeon also said she would probably be doing a nipple sparing technique. Sounded good to me.
Lois
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Hi Leaf,
I will definitely be looking up the syndromes on the internet. I guess if I do it and find out it's positive I will have one more thing to add as to why I'm seriously considering a prophylatic bilateral mastectomy. The onc. surgeon also said she would probably be doing a nipple sparing technique. Sounded good to me.
Lois
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lopalermo,
I have decided to have a consultation with a second bs and ps in July. My mind is still leaning toward having the surgery, but not until next year. Since my last tests did not require biopsy, and my next is not until Feb, I am feeling okay with this for now. My dh says that he thinks that I have good reason to have the surgery, but will not influence me either way.
The new bs and ps are in my insurance plan, unlike the ps I saw in Jan. I am interested in hearing what they recommend.
Anne
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Hi, Lois,
My second opinion appointment is tomorrow. I'll meet with the radiologist and the surgeon. They are also trying to get my orginal biopsy slides so that their pathologist can re-read them. (This will be a 3rd reading of the slides!) I hope they are successful in this; it's been so long ago that I don't know if the original facility still has the slides, or if they do, whether they can easily get to them. But since there seems to be so much question about exactly what my diagnosis is, this re-reading is really important. I'm hoping for a "tie-breaker" opinion. Guess I'll find out tomorrow.
I thought that I was ready to do this surgery, but now am not so sure. A lot of it will depend on what they tell me tomorrow. If I decide to continue the process, the next step will be to see the plastic surgeon on June 9. A total waste of time and money, as far as I'm concerned, but I have to do it anyway. Oh, well.
It sounds like you are in good hands at MD Anderson. I hope that you get some useful answers; I'll be thinking of you. Keep us posted!
Thanks so much, everyone.
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lucky32, having second thoughts is very common. (as I certainly know!) I came to realize that it is not a situation where I have to decide right now. If I already do have bc, it must be very small and slow. If I don't, then I have even more time. So, take your time to talk to the surgeon. It's not a waste. Look at it as part of your education. We are in the process of getting our BC BS.
Anne
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Lucky,
What did you find out from the surgeon and radiologist?
Peaches,
I feel like you- I'm in no big rush but I don't want to wait so long that I end up with BC and then have to have surgery, radiation and chemo. It would be so nice to know what our safety net time frame is- oh well I guess that's what makes life interesting.
Keep me posted on what y'all are doing and how your appts. go.
Lois
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Hi, Lois,
My appointment went well. I posted about it in a thread called "Had 2nd opinion today," in this section of the board.
I'm going to continue the process, but haven't made the final decision yet.
Thanks for asking! Hope you are doing well.
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Hi everyone,
I have an appt. with a genetics counselor and one with a psychiatrist at MD Anderson on July 22. Didn't have to do either of them but I decided what the heck. Then I have an appt. ith the oncologist surgeon and plastic csurgeon there the next day. I'll keep everone posted as to what I do. Hope everyone does likewise.
Lois
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Hi, Lois,
I wish you the best as you go for your appointments. I saw the plastic surgeon today. All this information-gathering is important and necessary, but it can be so draining! It doesn't help that it's about 300 degrees here today (okay, only 150 degrees
).
It's good that you will be able to see all your doctors in the same trip. I'm sure you'll get lots of good information when you go.
Thanks for letting us know!
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Lucky,
What did your plastic surgeon say?
Lois
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She understood immediately that I didn't want reconstruction. I was only there because the breast surgeon requires all her patients to have a PS consult before she'll operate, even if they know (as I did) that they don't want recon. The PS didn't try to push me or change my mind.
I did ask about having recon done later, just on the off chance that I change my mind about that, and she said it would be no problem. Implants are my only option, which is fine, but I'm no more interested in them than I ever was.
I've been about 95% sure that I would do this surgery. This week I've moved up to about 99% sure. I will decide for certain within a few weeks, I think.
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Kudos to the PS that she didn't push you for recon or try to change your mind.
Kudos to you for not letting anyone pressure you. Take just as much time as you need to make your final decision. -
Hi Ladies,
New here but checked in since I too am considering prophylactic double mastectomies.
I have had very dense and fibrocystic breasts my whole life, (54 now) I also had stomach cancer with partial removal at 38, then recurance and total removal (gastrectomy) at 43. As my brother also died of stomach cancer at 36 we have been trying to determine a genetic link.
Well about 3 months ago I get a call from a research center in Canada...Actually thru my docs here in Illinois. I have a newly discovered mutation of the e-cadherin gene called CDH1.
In addition to an 83% likelyhood of developing gastric cancer (which I had) I am at a 42-50% risk of deveoping lobular breast cancer. I am now followed by Northwestern University's breast center. Hence the tamoxifen. But seriously if you have any lobular cancer history get tested for this gene.
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I go in July 10th (four days from now) for Bilateral Prophylactic Mastectomy. In response to the original quesiton, here is how I arrived at my decision:
. How did you arrive at your decision? (either to do it or not) - weariness from the vigilance (6 mo mammos, follow up w/breast surgeon, follow up with oncologist, understanding my body - i grow things and have had 2 lb. durmoid removed from ovary, 4 small ovarian cysts from the healthy one, multiple breast lumps removed, very dense breast tissue, fibrocystic disease, first degree relatives w/breast cancer (mom - double mastectyomy 5 yrs ago; aunt) - can't tolerate Tamoxifen, age 52 and risk growing as I age.
2. How long did it take you to decide? 3 years
3. Did you talk to your family and friends during your decision-making process? Mom (panicked - bad idea), husband (very supportive but wants me to be safe), my three sisters (whatever I decide - super supportive), physicians (very supportive, no pressure - whatever I decide), plastic surgeon (very supportive, informative, realistic)
4. If you did, how did they react?
5. How did your husband or partner feel about it? See #3. Loves me like I am; didn't marry me for my breasts. His mom died of bone marrow cancer when he was 16 - he is still affected by it and doesn't want to lose the other lady in his life.
6. Are you satisfied with your decision? Yes, although I will miss their squishiness. But I don't really need them anymore. Besides, they are painful two weeks out of the month (hypersensitivity, lots of problem with hormone changes). Numbness might actually be a relief!
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P.S. I have had more of an emotional response to my decision than I expected - I left the PS office shaking (as did my husband) and have gotten teary eyed reading this website and realizing this is irreversible and will forever take away my breasts. But inside my gut I have a confidence that this is right. I think every woman who arrives at this decision needs to know her body well and walk in with her eyes wide open. Research, research, research. I have a lot of foreign things growing inside of me (large, multiple fibroids in the uterus, cystic breasts, cystic ovaries -- LCIS) and my mammos invariably show microcalfications or other changes. The hyper surveillance gets in the way of my life, and ultimately, I'm just done. I don't want to worry anymore, and I don't want my husband to worry anymore.
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psalmist--just sent you a PM.
Anne
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welcome to the website psalmist- Please continue to share your experiences with us as you go through your surgery and recovery. I'm really close to bilateral mastectomy and reconstruction myself but probably not until Aug. I'll know after my appts. at MD Anderson on July 22 and 23.
Chrsily1- thanks for the heads up on CDH1. I see a genetics counselor on July 22 and have already talked to oncologist surgeon about the pten mutant gene test.
Peaches,lucky32 and leaf- what are y'all up to?
Lois
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Lois--is your insurance covering your genetic testing? I just got the notice that mine will not cover it--they said I "do not fit the criteria set up by the ACS". (I have LCIS and family history--mom had ILC, MGGM had bilat bc). They quoted me a list of catagories, none of which I fit into.
1) family history of male bc
2) family history of ovarian ca
3) Ashkenazi jewish heritage
4) BRCA positive family member
5) bilateral bc or multiple primaries
6) 3 or more relatives with bc or oc
7) 45 or younger at diagnosis
Oncologist's nurse was very surprised--she said she would call and look into it--the doctor may have to write a more detailed letter. I'm actually a little relieved--I'm already high risk, I don't know if I really want to know if my risk is even higher! Positive results would have a direct impact on my daughter and my sisters as well.
Anne
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Hi Anne,
My ins. company paid for BRCA testing (came out negative) and breast MRI which lead to a lumpectomy showing two areas of atypical intraductal hyperplasia, papillomatosis and LCIS. Interstingly enough I had just had a mammogram 5 mos. prior to the breast MRI and it showed absolutely nothing!!!!!!!! I actually recieved a letter from the breast clinic saying I didn't need to return for another year. The Dr. and I only decided to do the BRCA testing and breast MRI because I had a mother that died of breast cancer at the age of 56 and a younger sister being diagnosed with ovarian cancer last year. Even though it is scary to find out I'd rather find out things early and be preventive minded hince I am 95% sure I will do the prophylactic bilateral mastectomy by the end of the year with reconstructive surgery. If finding out I have a mutant gene helps other family members and science technology I'm all for it.
What have you done with the LCIS?
Lois
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Hi Anne--definitely have your dr. write a letter. My friend had s similiar situation and after receiving the drs letter the insurance covered the test.
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Lois--I'm not quite sure I understand your question about "what have you done with the LCIS?" But what I've been doing is this: alternating digital mammos with MRIs every 6 months, seeing my oncologist every 6 months for CBEs on the opposite schedule (so I'm essentially "seen" by some method every 3 months), I see my gyn once a year (which includes another CBE), do frequent SBEs, and take tamoxifen to help prevent an invasive bc in the future. I'm also trying to eat healthier and exercise more. I will be taking a short break after finishing up the 5 years of tamox in October, then will probably go on Evista (for further prevention of invasive bc; it will also help prevent any osteoporosis). My initial diagnosis came after suspicious microcalcifications were seen on mammo, then f/u with a stereotactic core biopsy and a wide excisional lumpectomy.
Anne
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Hi Anne,
Thanks for being able to read between the lines of my question. I have been deliberating for a while as to whether to have a bilateral prophylactic mastectomy or take the evista and wait and watch. I must admit after having already watched 4 immediate family members go through cancer I'm about 95% sure I will go ahead with the prophylactic bilateral mastectomy. BUT just a couple of questions- Did you ever have any side affects from the tamoxifen? and did you ever have to have other biopsies or lumpectomies? I realize we all have to make our own decisions based on our own knowledge and heart. Thanks for being there and God bless.
Lois
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Lois---I have been very lucky--my initial SEs were pretty mild overall; annoying, but certainly manageable. Mainly hot flashes, some mild insomnia, and some achiness, but the way I look at it, I could've had similar symptoms with natural menopause anyway. Since so many of us that take these meds are around perimenopause/ menopause age, it's sometimes hard to distinguish what SEs are from the medication and what ones are from the loss of estrogen. But I had immediate surgical menopause from a total hysterectomy about 18 months after going on tamox (not by choice-- I had ruptured ovarian cysts), so my SEs increased directly due to the sudden dramatic drop in estrogen. (they were not bad at all before my surgery). I would just recommend to anyone taking tamox, to have a yearly transvaginal ultrasound to monitor both the uterine lining and the ovaries. I haven't had to have any other biopsies or lumpectomies (other than the initial ones)--I did have some areas they were watching on MRI, but all f/u mammos/US/MRIs have been clear. I do OK living with the high risk for the most part, it's just stressful at testing time. I do like knowing they are watching me so closely, that if anything were to crop up, they would most likely find it very early when it is more easily treated. While I don't really like the idea of starting another long term medication, taking the Evista will give me more of a sense of security, and a feeling that I'm doing something very proactive in trying to prevent an invasive bc in the future.
Anne
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I have LCIS and ALH. I have been on tamoxifen since July 2006. I recently acquired another disease so that *if* I ever get bc, radiation will probably not be an option. It is probably much more of a threat to my well-being than is LCIS.
I had 2 breast biopsies in Feb 2007: both benign. One was microcals, and the other was scar tissue.
The side effects I have had from tamoxifen are: warm flashes (but hard to tell if they are from tamoxifen as I'm 54), irregular menstrual bleeding, and a benign endometrial polyp.
(Curiously, tamoxifen has been tried for my other disease, but it didn't work to slow my other disease, but then again, nothing has in placebo-controlled trials. Tamoxifen also didn't prevent me from getting my other disease, though its probably been going on long before my tamoxifen or LCIS diagnosis.)
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Lucky, I was told 8 years ago that I had LCIS. I have had may biopsies and a (3 lump) lumpectomy. My last Mammogram showed a dramatic change in my left breast. As my surgeon said to me "I am loaded with small calcifications". My breast are also very dense and very hard to read. They biopsied one and it came back with the cancer marker. Because these calcifications are all around the same size, they feel that they are the same. I cannot take an MRI to diagnose better or to be able to monitor them in the future. I knew that this day would come and I am faced with the same decision. My daughter just had my third grandchild and I am not willing to risk my health and not being able to see these children grow up. I do not have a family background because I am adopted. I have an appointment with an PS next week. And trying to make an appointment with an Oncologist. I don't do well on Tamoxafin. After I have met with all these docs, I will go back to my surgeon and make my decision. I did discus this with my friends today at lunch. It's hard when you really don't have a cancer diagnosis. Even the MRI tech didn't understand what I was saying. So when you tell someone that you need a PBM but that you don't have cancer they think that your nuts or just don't understand. But one of my friends lost a friend to breast cancer who did have LCIS. She chose not to remove any of the cancer marker lumps and to monitor them. Within a few years she had full blown cancer and died. I keep thinking of her and what her choices were. I am very afraid not to make the right choise. I know that I trust my surgeon and his opinoins. Thats what it boil down to is whos opinion you trust. For the most my family thinks that I should do the PBM. My husband (a BOOB man) wants me to do it also. He thinks it will give us more time together. He was very sweet. Good luck in your decision and keep us posted.
Hope
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