Diagnosed with DCIS, ER+, PR+ and HER 23%. I have had two opinions for treatment

Astrid

Diagnosed with DCIS, ER+, PR+ and HER 23%. I have had two opinions for treatment and they are both different. One scheduled a lumpectomy right away and discussed chemo and radiation. The other wants to do genetic testing and then if my genetic test comes back + to do a double mastectomy.

I have thought and thought about what I want to do. I am not sure at all that I am ready to loose both of my breasts due to this. I know if my genetics test comes back + it is a “No Brainer” to have both breasts removed. I am only 47 and my breasts are still an important part of my sex life. At 47, I am not sure I am willing to give them up. I may also benefit from fully understanding breast reconstruction. Do I keep my nibbles? I believe there is a 40-70% of reoccurrence of Brest Cancer if I am + for the mutated gene test and that women with Breast Cancer are likely to develop Breast cancer again. That 1 in 4 women who have been diagnosed with Breast cancer can get it again. My Sister had a mastectomy and her cancer came back in her lungs and liver and then she died within 2 years. I know of a woman who had breast cancer, took her Tamoxifen for 5 years and then the cancer came back in her spine and she died. I also have a friend who was 43 when she was diagnosed and her breast cancer came back in the same spot 13 years later. She was not consistent with her Tamoxifen. That was 2 years ago and she is doing well on Arimidex . Maybe I want to roll those dice. I have a 30-60% that this will never come back and if it comes back 10 years from now, we may be able to understand why much better. Another thing, if I have the mutated genes, I am not as likely to develop ovarian cancer? Would it not be better to close the factory on the ovaries and avoid the Tamoxifen?? Again concerned about the lose of sex drive, does that mean that I will have NO desire for sex or that I just have to work harder to get my head right?

Comments??

24242

I am sorry you too have to find information so you too can decide your coarse of action. I was 36 at the time of my diagnosis, my paternal grandmother died from bone cancer after an almost 10 year survival which was incredible at that time, in the 60's.
I think the best advice given and was given by two in the medical field and it was: Worry about the cancer and the side that the cancer is on. So many are having double mastectomies and don't realize how hard it and traumatic it is on the body. My surgeon and mother who was a nurse at time said if you want the other gone, do it after. In my case that turned out to be the best advice. Didn't save me from my problems and diseases but sure saved my life if not spare more pain and problems. I always say I never listened to anyone before, especially my mother, why am I now? Thank God I did. Some of us are very sensative to drugs and everything done to us. I am saying this to scare you but I found no one really talks about the side effects, more intent on coarse of action. Even when you are experiencing things people normally don't, sometimes more concerned about getting the chemo into than digging into the problems that can rear their ugly head. No one really reads the small print to find out the risks and chances of each side effect and there are many.
I am 8 years survivor of stage 3 with 11 out of 21 positive nodes and not hormonal sensative. Agressive treatments were in store and that too took it's toll. But I am here to say that we know are own bodies and we have to start listening to them. I don't know what most percentage of success rates there are but I had 50/50 chance. I am grateful for each day for the outcome could have been a whole pile different.
Attitude and knowledge are what we have to bring to the table. Doesn't seem like allot but can make all the difference. HOPE is a four letter word... Where there is a garden there is hope.
Be good to yourself and learn to treat yourself like you would your own best friend.
Tara

Just reading a book The Promise of a New Day since I have learned living is nothing but hard work.

Sandis

I think the idea of getting testing for the gene is a great idea and can give you information that will help you make a good decision that's right for you. I had a lumpectomy, then genetic testing and then bilateral mastectomy with tramflap reconstruction after the tests came back positive for the gene. I felt that it was definately the right decision for me. But, if I didn't get tested, I'd just worry if I had made the right decision. Anyway, you have to do what's right for you. Sandi

tlmac

Hi Astrid, You've raised some important issues. I'd just like to add that only a small percentage of women tested for breast or ovarian cancer get it as a result of genetic predisposition (5-10%). I agree, however, that genetic testing would give you additional information. If you do test positive for either BRCA 1 or 2, it would definitely influence decisions regarding the added threat of ovarian cancer. I had a bilateral in 2003 and a complete hysterectomy in 2004 due to continuing problems, not related to my breast cancer. At 53, single and postmenopausal, I was in a different place with my life. Breasts represented a threat of the cancer's return and I wanted to avoid that at all costs. Have never regretted my decision. Remember, however, that your ovaries are the primary but not the only source of estrogen. Postmenopausal women, even those of us without ovaries, have to be concerned that the estrogen converted by our adrenal gland will feed ER or PR+ cancer. I will take Arimidex for 5 years because of this threat. I too have friends who have recurred while taking Tamoxifen. One died just weeks ago following a courageous battle. Each decision we make is so personal. You are wise to collect as much information available as you can. The choice you make has to be the right one for you. Best of luck.
terri

inkblot

Hi Astrid:

I agree with the others here. Terri has shared some excellent points to consider.

The most important thing is to do what is best for how YOU feel about all the information you're considering in making your decision. What works for someone else may not feel "right" for yourself.

I had lumpectomy w/sentinel node dissection. I will be 5 years out in about 3 months. My tumor was 1 cm, hormone negative, Her2/neu 3+ (tested at 96%) with all the other pathology factors not so glowing. I had A/C chemo followed by radiation. No Herceptin or Taxol. I'm doing very well with good check ups and my visits are now all down to once yearly. Hope that may be some encouragement for you.

I have friends who've had mastectomies. Some regret it and some don't. Strangely, the friend who had the best reconstruct result regrets her decision the most. Some women have easy reconstructs with good results while some have difficulties from the get go with infections, etc.. Some choose no reconstruction at all and are happy with their choice. Sometimes mastectomies seem recommended a bit too freely and it's not always apparent why, in some cases. As Terri pointed out, even if you test positive for genetic predisposition, your risk is still not huge (statistically), due to that factor alone. All the major studies state that in early bc, lumpectomy nets the same survival results as mastectomy. How genetic testing results may effect those stats, I've no idea. I've not seen any studies which looked at BRCA positive women re
mastectomy vs. lumpectomy but there may be some out there for review.

My thoughts are that it's a lot of info and a lot to consider so you want to consider carefully.

One thing to keep in mind is that even the most radical mastectomy cannot remove ALL breast tissue. My thoughts are that it's rather a major
procedure to remove both breasts based upon genetic test results. Would an otherwise healthy woman choose such an option? Some probably would and some would not. Some women, already dx'd, may be more comfortable with that option but it's a big decision.

Am wondering how old you are and if you have DCIS in both breasts? Do you wish to have children, if you haven't already? Is the DCIS widespread or a single cluster? (Your Her2 percentage is not very high by the way) Don't know what part of the world you live in but I'd recommend yet another opinion. Especially since the two you have are so very different. On the east coast of the US, in New York and Philadelphia areas, you can go for a very comprehensive consult visit, at some of the larger facilities, (Memorial Sloan Kettering, Fox Chase, UP, etc.) which includes your seeing a surgeon, radiation oncologist and medical oncologist. (takes up the better part of a morning) A pathologist also sits with the team, before your visit, to review your original path report and your actual slides, which you bring or have mailed to the facility. It's indepth and you'll get a lot of feedback and suggestions as to what they recommend and why. May well be worth the investment of time, if you have access to a facility which offers something along these lines.

Whether to even have genetic testing is quite a consideration in and of itself. What to do with the information, once you have it? How much will it help you in deciding what to do re surgery? In families with a history of BC, some decide to have the testing, while others don't want any part of it. I guess the question is where would one draw the line regarding prophylaxis? How much can effectively be done to lower the risk of a person who tests positive? Just read everything you can on the testing procedures and try to talk with others who've had it done and consider it all carefully. Keep in mind that just because we have a particular gene, it doesn't mean that it will ever be switched on or that we'll ever get the disease we have a marker for. Each of us must decide for ourselves what makes sense for us.

Even without the gene, some women can and do get
bc again. It's sad that you know so many women who lost their battles with bc. It's a notoriously sneaky type of cancer, that much is a given. It can hide for years in our systems and then one day, rear it's ugly head. No rhyme or reason as to why. Others never have a recurrence. Gene or no gene. Her/2neu positive or not. Then, some women whose cancers are considered not very aggressive, based upon the pathology, get a recurrence anyway. This just makes it all the more difficult to make sense of the "statistics" we hear quoted or read about and figure out how they may apply to ourselves and our particular situation.

A good friend was dx'd with DCIS several years ago. She had 3 areas of it in one breast. She ended up having 3 different surgeries to remove it
although she was given the option of mastectomy. She chose to keep her breast and no further treatment was recommended after 2 additional opinions, except for 5 years of Tamoxifen, which she is still taking. She was 57 at the time. Her sister had the same thing and she chose to have radiation, post surgery and she was, I believe, 54 at the time. Both have continued to do very well. One doctor advised her to have the genetic testing but she chose not to do so. She said it didn't matter to her because the precautions and care she'd take wouldn't change anyway. Regular mammo's, gyn check ups, etc.. Everyone feels differently about the testing and who may have access to the results, etc. and even how it may effect female family members' lives.

None of our decisions are ever easy. I know women who are very happy with the choices they made about treatments and others who regret their choices because they didn't have enough information at the time and/or just followed their doctor's recommendations without any 2nd opinion.

The fear of being told we have cancer can be almost paralyzing. And while we don't want to dally overly long in getting info and making our decisions, we almost always have some time to devote to that endeavor. As difficult and confusing as it can be, it's time well spent and can serve us well in the long run.

You'll find the answers to what's just right for you. Don't let anyone rush you or demand that you decide tomorrow. Ask doctors "why" they recommend a particular procedure over other options. Make notes and have several visits with your doc if necessary until you feel that your questions are answered to your understanding.

Am sending you a big warm hug. (we can never have too many of those in our lives) Remember to take some time outs while you're dealing with all this, to relax and recharge your batteries. Treat yourself gently and remember that this is your body, your life and ultimately must be your own decision as to how you prefer to proceed from here.

Please keep us posted.

Love, light and laughter,
Ink

Astrid

Thank you all for the help. Today, I have decided to talk to my second doctor and tell him I have decided to have the lumpectomy. Yes, I have thought about a third opinion, but my second opinion was from the University of North Carolina Breast Center director of Surgery. He will do my surgery and I feel confident with his skills. I am still going ahead with the genetic testing and praying that it comes back negative. I have looked into my Mothers family history and we only have the following incidents of breast Cancer. My maternal grandmother diagnosed at 43, one of her sisters diagnosed at 77 and my sister diagnosed at 38. There are No other daughters or granddaughter and my grandmother was one of four girls. So, I feel better about this NOT being a mutated gene. It also could be wishful thinking however; I have discussed my feeling and options with my family and they ALL feel that I would be best to roll the dice and just get the lumpectomy. I do not know if a mastectomy will ultimately save my life, but sometimes life needs to be about quality and not quantity. My sister battled cancer horribly for 2 ½ years. She had no tolerance for Chemo and was in and out to the hospital due to dehydration and extreme nausea.