scared of having a mastectomy

tovahsmom

Two weeks ago I was diagnosed with IDC. I had DCIS 10 years ago on the same breast and had a lumpectomy and radiation. I had been reading before I even saw the doctor, and on this site too, that mastectomy is the standard of care after you've already had a lumpectomy with radiation on that same breast. So when I saw the doctor, he actually offered me another option - sending me to a radiation oncologist and seeing if I could receive radiation again and save the breast. The thought of another 6 weeks of radiation was devastating to me, but so is losing my breast. Surgery is scheduled for next Friday, the 22nd, and I am having second thoughts and trying to get a second opinion quickly. When I told my mother of my decision to have a mastectomy, she, who had a bilateral mx for her own ILC 12 years ago, made me question why I was having a mastectomy. Now I am wondering if I am doing the wrong thing. Can anybody offer me any words of comfort or assurance that mastectomy is going to be okay. I've already been to the breast cancer store and looked at prostheses and mastectomy bras but of course they told me to come back after I've had my surgery. It's all horrible.

I should also mention that I've already had two lumpectomies on this breast and that it is also deformed. I have two additional sites with IDC on this same breast now so that would be further deformation. So is mastectomy the right decision?

Rah2464

tovahsmom God bless you! Sorry you are going through this experience yet again. I think you have to make the choice that feels right for you and your situation. It is definitely not a one size fits all decision. Twenty years ago, one of my sisters had a single mastectomy. When I was diagnosed, she encouraged me to go for the mastectomy and reconstruction (she didn't and doesn't like bothering with the form for her mastectomy side she says it gets hot) . Given the suspected size of my cancer, the size of my breast, location of tumor, a lumpectomy didn't seem to be the best option for me. Difficulty in imaging sealed my decision towards mastectomy for both sides. It is a major surgery, and recovery can have its ups and downs but for me I haven't looked back. Whatever choice you make will be ok because you will be removing that IDC. And it is perfectly ok to make an emotion based decision when the medical outcomes are comparable. This is an emotional decision for all of us.

Are you considering any reconstruction if you do the single mastectomy?

Runrcrb

I can’t tell you the right-for-you answer. I can tell you that mastectomy does not automatically eliminate radiation. At the time of mastectomy will your surgeon also do a sentinel node biopsy? I had a sentinel node biopsy three weeks before my mastectomy which was super helpful. I knew prior to the mastectomy that i needed radiation and chemo.

Have you talked to a plastic surgeon? I met with two prior to my decision for a unilateral mastectomy (my breast surgeon and one PS were advocating for bilateral). Despite the perceived complexity I had DIEP reconstruction as I was certain implants were not for me. I did have a tissue expander placed at mastectomy that essentially “held the space” during the subsequent year of treatment and healing.

A mastectomy is not easy. Honestly DIEP was an easier experience for me but i know i am an exception. A reconstructed breast is not the same as my natural breast. I was able to have nipple and skin sparing so it looks pretty similar but there is limited (no) sensation.

My final advice is to delay surgery if you are not sure. Taking a few weeks to be 100% confident in your decision is not going to make a significant impact on your physical health but will go a long way to help your mental health.

Good luck

Meow13

I understand completely. I was absolutely horrified by the idea, but my surgeon convinced me it was the only way. I was really emotionally scarred by the months following. Then my plastic surgeon did a DIEP and it looks great better than any of the images I saw. I feel like it really fixed me I love the job he did, skin color matches so well and just a fine white scar line.

Plastic surgery is so good these days, light years ahead of cancer treatment.

blah333

You've already had breast cancer twice, (or is it 3 times, according to your signature...) why do you want to keep breast tissue? So it is more likely to happen a third or fourth time? The fact that it already occurred in a radiated zone does not seem like a good sign.... sorry. You need to accept reality that your breasts are very fertile for cancerous activity.... I don't mean to so sound harsh but leaning towards lumpectomy again sounds a little crazy.

It's true mastectomy can include radiation along with treatment, but usually only if it is along the chest wall. I had a bilateral mastectomy at age 35 and it sucks I had to ruin my body at such a young age due to shitty genetics (I don't even have BRCA genes) but seeing my mother have DCIS in one breast and then in the opposite breast 5 years later - it was a no brainer for me to remove them both at my first run in with cancer. Recovery was shockingly much easier than expected and I'm glad I didn't have to deal with radiation and its risks.

My DCIS was 6cm (multifocal) so it would have been too much of a deformity for my B sized breasts. I did not have recon and got pretty good flat results. Rather than having a lumpectomy chomp taken out or implants or altering other parts of my body, I figured I would rather just have a flat blank spot - "nothing" if I couldn't keep my own, real breasts.

You are right though - it IS all horrible. We basically get to chose between shitty decision A or shitty decision B, with a few twists to them etc. But you need to think about your health and your future! Mastectomy is going to be OK! Maintaining your high risk for recurrence by keeping breast tissue may really NOT be ok next time!

Salamandra

It makes sense that mastectomy would be scary. It is scary. But sometimes the scarier thing is the right thing to do. It sounds like you intellectually believe in this and have done all your due diligence in terms of second opinions, etc. Now is the perennial human struggle to persevere through our fears.

You can do it! And you will feel a great sense of confidence in yourself when you do.

Get help - from a social worker or therapist or psych or friends or family. Talk to people, vent, journal, research whatever works for you. You don't have to do it alone.

KBeee

It never hurts to have multiple opinions, but ultimately you need to make the decision that is the best for you. When I had to make choices, I made an old fashion list on a pice of paper with pros and cons of all options. Seeing it in front of me in black and white always seemed to make the decision very clear.

Racy

Have you looked into cryoablation?

JoE777

For me, recurrence would equal mastectomy. If it was in both breast that would equal double mastectomy. I never had a recurrence in the breast with the lumpectomy . I just went metastatic to bone and lungs. Metastasis should be your focus right now. Once metastatic always metastatic. So sorry for your hard path .

IslandGirl123

Have you considered cryoablation combined with immunotherapy?

MexicoHeather

Yes, this is a hard choice. Because of the past treatment, most oncologists are going to suggest surgery. It is a big operation. I think you might feel better if you spoke with a plastic surgeon, too. The location is going to make a difference. I am sorry this is happening after you've had radiation.

tovahsmom

Thank you everyone for responding. I had the mastectomy on March 22nd and got the pathology results back just yesterday. The doctor said it was a good thing I had the mastectomy because there was lymph node involvement, two foci of IDC, and DCIS everywhere.

msphil

hello sweetie I was diagnosed as we were planning our 2nd marriages I was 42 I wanted lumpectomy so I wouldn't go into new marriage with one breast But Praise God I decided on mastectomy and Praise God no recurrence and this yr a 25yr Survivor. I went thru reconstruction body rejected it with high fever and hardened been wearing prothesis and no problems since. Your decision. msphil idc stage2 0/3 nodes 3mo chemo before and after chemo and got married then 7wks for rads and 5yrs on Tamoxifen.

buttonsmachine

I'm only speaking from my personal experience, but...

I did have radiation twice, and it's been okay so far. The mastectomy, on the other hand, is something I still struggle with, physically and emotionally. I wish I could have chosen to save my breast if at all possible.

Maybe see what the Drs can offer you. Best wishes for your decision.