Not Sure What to Do!

mlb1202 · September 2014

I am very glad that I've found this site as it's been a huge resource of information and support for me. Just reading other threads/posts in the DCIS topic has truly helped me feel like I'm not alone. That being said, I am truly struggling with a decision on what I want to do for treatment. I was so sure what I was going to do, and now I'm really considering having a bmx and was not expecting to feel this way and it's so overwhelming because I know it's probably a bit extreme to be considering this at this point.

My diagnosis after a lumpectomy to remove what they thought was precancerous cells was DCIS- Grade 2 (ER +) I am so thankful and lucky that they found it and caught it when they did. However, It still scares me to think that I am now at even higher risk to develop bc again in the future. (And there is a 50% chance if I do...it will be invasive)

Due to my age (42) and family history, my surgeon 1st recommended genetic testing. If it came back positive, the recommendation was a bmx with reconstruction. If it came back negative, 6-8 weeks of rads and then they want me to take Tamoxifen. For the first few days... I felt like I had only one option for either scenario from the genetic testing. However, after meeting with my surgeon & genetic counselor this week I was told that my insurance would actually pay for a double mastectomy even if I was negative for the BRAC1/2 gene and it was an option for me either way. My surgeon did say that it would be a bit aggressive if I'm negative for the gene to do this, and I did initially agree with that.Then I began thinking... : )

As I mentioned, I am 42. If I'm anything like my mom, aunt and grandmother I have at least 10-12 years before I am "menopausal" and I'm hoping that I still have at least 42 more years to go in my life.. Hopefully more!!! That's a LONG time to wait for another round of BC. I know the rads will decrease my risk of getting bc again in the right significantly but what about the left? I also know if I add in the Tamoxifen (which I will try, but do not really want to take as I am SO sensitive to meds ) it is even less, but the truth is... even without the "gene" I still feel in my "gut" that it's a matter of time before I'm dealing with some form of BC again. This is strange for me as I'm not a negative, worrisome person. It could be fear, it could be due to my family history.. I don't know, but I really don't want to spend the next forty something years waiting for the news...

I watched my brother die 13 years ago from Leukemia (he was 27) my mom and dad both had colon cancer, but luckily both were caught early and they're doing great... my aunt (mom's sister) was diagnosed with invasive stage 2b breast cancer at 51. She went through surgery, chemo, radiation, and all of it in 2010. She has been cancer free almost four years, is doing great, and is so strong, but the truth is.. I don't want to have to go through that either. I know of many women in my life (and have seen it on this board) who have DCIS or an invasive diagnosis in one breast, only to get dx again years later in the other. My great-aunt had stage 1 (IDC) in her right when she was in her 50's. She had a lumpectomy and I'm not sure if they did radiation/chemo or either back then. (it was 1998) Anyway, less than 2 years later.. she had stage 4 in the left! She did survive it, but it was a long battle of on and off again chemo treatments, she was so sick, and she ended up having a bmx, and STILL needed the chemo, rads, and literally had to fight for her life. She too, thought her first diagnosis was a one time thing. It scares me. Even if results come back negative... I just have this fear or nagging feeling that I'm rolling the dice here and crossing my fingers that "it won't happen to me..." So I'm not sure what to do.

I certainly don't want to make a decision this big out of fear. I also don't want to do something because it is what I should do because my diagnosis is not "that serious". I can't help but wonder if my DCIS dx was a warning bell for me or if I'm being crazy and need to just relax, breathe, and just treat the cancer they found instead of the "one that hasn't even happened yet!" Then I think, if my insurance will pay for it now... well, they consider me a pretty big risk for another breast cancer right? Ugh. I almost hope that I am positive for the gene as it basically takes the decision away from me. I need the bmx and that's final! I'll have the results in another week and a half & at that point, have appts. to see the MO and RO. I just have such a sense of "uneasiness" about it and I hate it. I really don't want to get too ahead of myself here. Not to mention, I'm a teacher and don't want to be out of work for 8-10 weeks if I do surgery! If I do radiation, I can go after school! I also have a 3 1/2 year old son who I love cuddling, hugging and picking up. However, I'd like to also not be sick during his life either if I can help it!

I know many of you probably struggled with this decision as well and I would truly love any input anyone has to share. I am really just surprised how/why I am starting to question the treatment that I thought I was so comfortable with a week ago. I know I'm lucky to even have a decision to make. I feel guilty for even feeling this way, as so many women out there are battling this disease and fighting for their lives.

ballet12 · September 2014

I'm sure that others will chime in. You will need the results of the genetic testing. It is totally understandable, with all of the cancer and loss in your family for you to feel terrified at this time. And totally understandable that you want to do the bmx, no matter what. Just keep in mind that what you see on this website, in terms of recurrence, is not representative of all bc survivors. With regard to DCIS, the majority of women do not go on to have recurrence or even occurrence in the other breast; however, those that do are more likely to post on this website. So, you would see the worst case scenarios. There is definitely increase risk after one is diagnosed, but after treatment, the risk to the treated breast is usually not horrifically high (actually less than the risk quoted for those with atypical ductal and lobular hyperplasia--my risk for a number of years with those diagnoses and family history was probably around 35 percent--my risk now, post diagnosis, is lower than that). If you want the recurrence risk to drop to 1 to 2 percent, then bmx is the way to go. If you can tolerate somewhat more elevated risk, then go with the lumpectomy and radiation. Please read (on the DCIS threads) the threads about making the mx vs. lx decision (pros and cons) written by Beesie, a very knowledgeable member of the bco community.

mlb1202 · September 2014

ballet12,

Thank you for your response. You make a good point, and one that I try to remember, in saying that the posts I read about recurrences or new bc in the 2nd breast, are a small representative of all the women out there that had DCIS or even an invasive cancer, and that many that have not had any issues since the original dx may not be posting. I know it's an important point to keep in mind. I have read the post that Bessie wrote and actually printed it off! It was an amazing resource and help & I appreciate you letting me know. Again, it's all still pretty new and I just want to do the best thing for myself to ensure that I can move past this without worry, fear or making a rash decision. I truly appreciate the feedback. thanks again!

Annette47 · September 2014

I agree with everything Ballet said, but also wanted to offer that I was pretty much in your same shoes (diagnosed at 45, not expecting menopause until 55). I initially had many of the same fears, and the conviction that I will be facing this again in the future, but now, coming up on 2 years from my initial diagnosis, much of that has subsided. Yes, I realize it is possible I will be facing this again, but at the same time, I am becoming more comfortable with the fact that the odds I won't are very much in my favor.

I chose a lumpectomy with rads and Tamoxifen and have tolerated all of that very well so far. I would say that if you have any doubt, start with a lumpectomy - you can always go back later and do a mastectomy, but you can't put them back once they have been taken off. Best of luck with whatever you decide.

Bren58 · September 2014

mlb1202, I am one on those who was dx'd with DCIS at 41, had a BMX and found myself back here 12 years later. I happened to be in the 1-2% that recur. I really thought I would do a lumpectomy but was told that if they did not clean margins I would have to go back in for more surgery. In the end I chose to do the BMX even though it was not the recommendation of my BS. I know I could have done a MX but decided to have the BMX for a lot of reasons, one of which was so that I would always be even, no matter what weight fluctuations I would encounter. In the end it was the right decision for me, but only you know in your heart what is the right thing for you to do. If you have not checked out Beesie's thread about DCIS I highly recommend it. I will try to find it and add it.

Go to the top and start at the beginning if it does come up first.

https://community.breastcancer.org/forum/68/topic/...

jarris77 · September 2014

I understand how hard it is for most people to make this decision. I was dx with IDC in May of 2013 (1.7 cm). My surgeon immediately started talking about having lumpectomy and radiation. I was also told they wanted me to have genetic testing due to mother and sister having BC. Also, brother and sister had been dx with melanoma. Genetic testing came back negative for BRCA. Genetic counselor said it is very possible that there is something genetic, just not the ones they tested for.

I had already been in for a biopsy several years prior to my dx (my cancer ended up being in the same spot as previous benign biopsy).

I told the surgeon that I had already made my decision...I wanted a bmx with no reconstruction. I am a very anxious person and I wanted to have as little worry as possible. I realize there are no guarantees but, I wanted to minimize the risk of having to deal with this again and I didn't like the idea of having to go back every six months and going thru the worry and anxiety every time. He said I should go ahead and make appointments to talk to the plastic surgeon and learn about radiation.... just in case. I told him there was no need - I wasn't going to change my mind. He said he would schedule the surgery.

I know the odds are about the same with lumpectomy or mastectomy. I just went with the decision that I thought would give me the most peace of mind. I was triple negative so I knew I was going to be having chemo whatever my decision. At least this way, by opting for the bmx, I did avoid having to have radiation.

I asked my surgeon what he would recommend if this was his wife (the question he probably hears several times a day).He said she had already told him if it ever happened to her, they were both coming off! Even though my decision had already been made, it made me feel better to know I wasn't the only person who felt that way. Obviously, I'm not trying to influence your decision, just wanted to let you know that you are not alone in thinking the way you are.

LAstar · September 2014

This is a very difficult & personal decision. I did a lot of research and told myself that I didn't have to decide until my genetic testing results were in. It gave me a little emotional distance to just read the latest research and educate myself. I finally decided on lumpectomy and rads, but after two lumpectomies with involved margins the writing was on the wall and I needed MX. I opted for BMX because of some suspicious spots on the other side (that turned out to be nothing at all). MX has its issues, especially if lymph nodes are removed and there can be long-term pain issues. Lumpectomy and MX have similar survival rates but the recurrence rate is higher for the lump/rads treatment. Lumpectomy is a much simpler surgery with a short recovery and fewer possible complications. This is a tough decision given your family history if the generic test comes back negative. However, like Annette said, you can try the lumpectomy. I have peace of mind knowing I tried to avoid the larger surgery and that it was needed. You have to find out which path gives you the most peace. Only you can make that decision. I wish you the best!

Not Sure What to Do!

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