Newbie High Grade @ 40- Feel Normal, Healthy and Happy Again?

HGx2 · July 2013

HGx2 · July 2013

Hello Everyone,

I had my first mammogram in May and ended up being diagnosed with DCIS after an open biopsy on May 24. My DCIS is 3.1 cm, high grade with comedonecrosis. I am ER+/PR+. After much fear and stress, I have decided to move forward with lumpectomy and radiation and 5 years of tamoxifen. My lumpectomy to get the margins cleared is scheduled for next week. There was an area of suspicious microinvasion so they plan to do a sentinel node biopsy as well if that is confirmed by pathologist second opinion. My mom had invasive ductal carcinoma at 59 and was treated with lumpectomy, radiation and 5 years of arimidex.

We went to see 3 surgeons, a plastic surgeon and a radiation oncologist in the attempt to make the best decision. They all made it sound like I would be completely safe keeping my breasts. They all explained that I would be monitored so closely, it is highly unlikely that anything would get by them. I have read so many percentages that my eyes are crossed. I wonder with each statistic and each percentage how that applies to me. My surgeon has given me the 20% without rads, 10% with rads and lump, and even less witht the addition of tamoxifen. Even these percentages only go out about 15 years or so. Then I was told my chance of developing a recurrence or another breast cancer is about 1% per year over my lifetime. I plan to live a long time so that is a lot of years.

I am young. I have two very young children. I want to do this, keep my breasts and just move on with my life with the faith that this is gone forever. Right now, I can be okay with everything for a bit and then the anxiety creeps up on me again. Does it ever go away? Will I be able to do this and live a happy life and put it behind me? I am not sure that having the mastectomy would be any better for me mentally so I feel I should just go for the least invasive since my survival rate is the same. Is there anyone out there who can offer reassuring thoughts or peace of mind? Is there anyone out there who has gone many, many years with no recurrence or new cancer? Is there anyone out there who can tell me when this anxiety will subside or what I can do about it in the meantime? I feel silly getting so worked up about this when there are so many people going through much more horrible things. Thanks for any thoughts or comments.

HGx2

J9W · July 2013

Hi HGx2, sorry that you are in this situation. Yes, you will feel happy and healthy again, although for a while you'll be scared by every ache and pain. I was dxd in August 2009, had mx, was watched very closely by three different doctors, freaked at every ache and pain I felt, but finally, I'm getting back to normal. I no longer have to see a doctor every 4 to 6 months (that got old fast) and I've once again begun to realize that those aches and pains are normal for someone my age. I do agree with you, having a mastectomy doesn't really make you feel any better mentally; I had the mx because of the locations of the DCIS.

HGx2 · July 2013

Thanks so much J9W. I am sure the further I get away from the diagnosis and treatment, I will begin to feel better. I realize I have been very fortunate to have a choice in my treatment but the stress that comes with that is hard to deal with. Ultimately, I never want to look back and regret. There have been moments when I thought a mx would be best for me because of my worrisome nature but I have to constantly remind myself that I am okay no matter what. Even with less than a week to go before surgery, I still am asking myself if I am making the right decision mostly because I am so young. I am just glad to know that eventually life will get back to normal and this won't always be in the forefront of my mind getting in the way of my life.

TarheelMichelle · July 2013

HGx2, I chose a lumpectomy over mx in 2008. I had a young son and wanted to recover ASAP. Our choice of treatment, whatever it may be, is never a guarantee that cancer is "gone forever." The anxiety and self-doubt you feel are natural, normal emotions, not silly ones. Those feelings will subside as time passes, I believe. No matter what happens in the years ahead, you can be satisfied that you made a careful decision under tough circumstances. My breast cancer spread in 2012, but I do not look back with regret, wishing I had chosen a mastectomy. If I HAD chosen MX (and chemo, ovary removal, tamoxifen) and THEN had a recurrence, I think I'd be devastated at all I endured "for nothing." I made the right decision for me to keep my breasts and I'm happy. They weren't dangerous to my health, then or now. Removing one's breasts isn't a guarantee to be cancer free forever. You said it best: you are OK no matter what. :-D

HLB · July 2013

I had an extremely hard time deciding between lx and mx so I know how you feel! When I finally decided on lx after having a big crying fit I felt so good and relieved, just to have made the decision. It turned out I needed mx anyway because of bad margins and very small breasts. I was devastated but after it was done I was surprised at how it did not bother me at all (I got expanders). You will feel better and eventually not worry. :-)

Beesie · July 2013

As the others have said, Yes, you will feel normal again and the fear will fade with time.

I had a single MX - no choice about that because of the size of the area of DCIS, although if I'd had a choice, I would gladly have had a lumpectomy + rads. I made the decision to go with a single MX only, despite having had 4 biopsies over the years on my other (left) breast. I even had calcs in my left breast at the same time that I was diagnosed, but my left breast calcs were biopsied and benign. When the MRI showed that my left breast was clear, I was thrilled and made the decision to go with a single MX.

That was 7 1/2 years ago. I've been fine since then. A few call-backs and 6 month follow ups - for complex cysts - but nothing more serious than that. I found that for about the first 9 to 12 months, the nerves would get me all the time. But after that, the fear really started to fade.... except when I would go in for my screenings. For the first 2-3 years, I would start to get nervous quite a bit in advance, but even that has changed as time has gone on. I remember one time sitting in the waiting room in my hospital gown, and I realized that I hadn't been nervous about the mammo at all. And the mammo was fine. That was a good day!

Having had the MX with implant reconstruction, I will also say that I have to deal with more issues related to my MX side than I ever have to deal with on my natural side. Implant reconstruction is with me every day of my life; my natural breast only comes to mind when I do my monthly BSEs or go for my annual screenings.

So I'm happy with my choice and I live very comfortably with it. You have to make the decision that's right for you. The important thing to know is that whatever fear you have now will likely stick around for while and then will fade over time - and that's true whatever surgery you have.

HGx2 · July 2013

Thanks to everyone for your replies. I think my biggest fear is that something will show up and not be caught until it is too late. But my rational mind has to remind me that with DCIS it usually doesn't work that way. I had a terrible night last night and am having a rough day today. I called my surgeon to just talk again but she has to call me back. I am not sure what I am needing to hear. If you had a unilateral or bilateral mx, do you think that you have any less fear or worry for the future? Am I just too young to be considering keeping my breasts and living a life cancer free?

Beesie, you seem to have a lot of information. I have read many of your replies. Thank you for your thoughts on keeping your breast. I want to have the mindset that I can do this without mx. Please tell me my fears of sudden invasive metastatic cancer are irrational.

HGx2 · July 2013

HB, Do you find that after having the choice made for you that you worry less than you would have had you kept your breasts than having to have had the mx?

HLB · July 2013

I think I worried a little less with the mx, but to tell the truth I didn't worry much at all once I was done with the surgery and I don't think I would have with the lumpectomy either. For some reason I thought chances were very slim for it to come back and pretty much didn't worry much at all. That was just from ignorance though, and not knowing what the real chances were. I assumed I was mosat likely done with cancer. Unfortunately I was not and I have spinal mets 8 years later. I didn't add my signature so as not to frighten you, I just wanted to give reassurance that you will definitely have a normal happy life! Also I had idc not dcis so don't let my situation scare you. I actually an still living happily now that I'm used to the idea, evem with mets, life is good. It is hard though to make these decisions. I remember such agonizing. Its not right that our docs are not even allowed to give their opinion what they think we should do. The way my BS said it was "I HAVE to tell you that survival is the same with lx or mx". I could sort of tell by her tone what she thought though. When I finally decided on bilateral mx she said "I think you're doing the right thing". I think you are going to be just fine whatever you decide :-).

Newbie High Grade @ 40- Feel Normal, Healthy and Happy Again?

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