New here! An introduction and hopefully get some advice.

Daninabae

Hi sisters,

I have just been diagnosed with Her2+ , ER and PR negative (Her2 invasive carcinoma of no special type). it was a 1.5cm tumor near the nipple on my left breast. I am 43 years old.
This come as a sad news for me but me and my husband are prepared to face this head on and hopefully we have many more years together.

I have so many questions and don't know where to start.

Doctor suggested options of lumpectomy or mastectomy.
I am worried about the pain I have to go through with mastectomyand the requirement to remove the whole breast (doc suggested both breast) and of course the long recovery period.
This could include reconstruction of both breasts which could be costly.

I also read that mastectomy don't really reduce the chances of recurrence compared to lumpectomy. Is this worth it?

On the other hand lumpectomy remove only the tissues around the tumor. I don't know if the lost tissues can be reconstructed to make it back to the original cup size and have the nipple reconstructed to be almost the same as the right breast.

I am in a state of dilemma. Good to hear what are your thoughts with other sister out there. Thanks!

Moderators

Welcome, Daninabae. We're so sorry you find yourself here, but we hope this community can be a source of support and encouragement for you as you begin down this path. We know the early days and weeks after a diagnosis can be overwhelming, but you are certainly not alone.

The Mods

WC3

Hi Daninabae:

Was this the oncologist, breast surgeon or plastic surgeon you consulted with? Was there a reason they recommended a bilateral mastectomy? Everyone's case is unique and if you are able to, it helps to have consultations with a few different oncologists and surgeons.

illimae

I can’t speak to the cost, my insurance covered everything except maybe a $100 deductible for the hospital admission. I had a lumpectomy but my tumor was much larger, so it came with a reduction and lift, so both breasts would match. I went from a DD to a full C/D and found recovery fairly easy, especially with my husband reaching the high stuff around the house for me. I hated the drains and sleeping on my back but that would be a part of either procedure. My lumpectomy was “nipple sparing”, so the surgeon was able to keep me looking and feeling like I did before. Good luck with whichever you choose.

Daninabae

She was a consultant surgeon.

She suggested double mastectomy and reconstruction as she feels that if one of my breast became smaller due to the lumpectomy, that would be pretty uncomfortable especially wearing a bra.
I have actually not seen an oncologist yet, because she was the one who broke the news to me.

Daninabae

It's good to know that they can actually match the breast to be the same. I am more lean towards lumpectomy surgery.

MinusTwo

Daninabe - I would recommend you talk to a plastic surgeon - and probably two of them. And maybe another surgeon also. The two work in tandem. Second opinions are always good. And I'd also suggest an NCI cancer center if you're in the US. Here's the link to the NCI https://www.cancer.gov/research/infrastructure/can...

Please do talk to an oncologist (or two) before you make a decision. HER2+ cancers are usually treated with chemo first before surgery if you need it because they are so fast growing. ALso just FYI, if you have a lumpectomy, that usually involves radiation after surgery - so ask about that also.

It's a very personal choice, but I selected a double mastectomy. However I am much older than you & had faced recalls on mammograms for almost 30 years.

Beaverntx

Daninabae , my diagnosis is different than yours but the issue of breast size is similar. My cancer was in the smaller breast to begin with. The lumpectomy, of course, left it smaller yet. I am comfortable at home without a bra and wear a mastectomy bra fitted to the full sized breast with an appropriately sized prosthesis in the pocket of the surgery side. It is not uncomfortable wearing a bra with or without a prosthesis. Not certain why the surgeon gave that as a reason. I agree exploring the rationale for the bilateral mastectomy would be helpful to your decision-making; a second opinion could also be helpful.

Sending hugs and thoughts your way ...

Daninabae

Thank you so much for sharing your experience to me and thank you for your kind words.

Daninabae

Thank you for advise. Really appreciate that.

I would love to have a 2nd opinion but I am not sure if I should delay the surgery or treatment since taking an appointment could take weeks especially during covid times. I am really worried.
PS: I am not residing in the US now, in Singapore at the moment.

marinochka

I happened to know someone with similar diagnosis and age. She went to 4 surgeons in very reputable medical centers regarding the same question: lumpectomy or mastectomy with HER2+

And 3 out of 4 were recommending double mastectomy.

She had this surgery a few weeks ago(after many months of chemo) with immeduate reconstruction. Now is recovering nicely at home already.

Daninabae

Really curious why double mastectomy is recommended since I read that it is not going to reduce the risk of recurrence.

barbojoy

Hi Daninabae,

Like the others mentioned, everyone's cancer (no matter how similar in description) is unique, but I can share my experience, which may be helpful. I was diagnosed IDC (left breast) HER2+, ER+, PR-. Originally, biopsies showed no lymph node involvement. The original doc came into the room recommending possible lumpectomy- but most likely single mastectomy. I sought a second opinion at the University Hospital. That was the best decision I made. My advice is to find the best facility in your area to get another opinion.

The docs at University did not recommend lumpectomy as an option at all, and said that I'd need MX for left. Having right was an option, if I wanted it. I chose to have both removed because HER2+ is aggressive and I didn't want the stress or worry of scans/tests of my right breast forever more.

Even though the biopsies did not show cancer originally, they took the sentinel node for testing and it was positive for cancer. Without the surgery, I suppose we wouldn't have known the cancer had spread. I'm now doing chemo and will later do radiation.

My diagnosis was 06/15/21, so I recently went through this. The best advice I can give, aside from getting a second opinion is to move deliberately and thoughtfully through the process. I felt like I had to move fast above all else and I got swept up in the medical team's timing and process -- just going with the flow. I wish I had done more research on the surgery, side-effects, pain and pain management, recovery, long-term impact, etc. This site is obviously a good tool. The women here are also fantastic first-hand resources.

Best of luck to you!!!

Barb

marinochka

It is aggressive type and young age. She decided to do that to protect herself from recurrence. And most of doctors (second, third and fourth opinion) were recommending it. Originally she did not want to have mastectomy, but after months of chemo(which was not too bad) and after she was told that she needs chemo after the surgery, she decided that she wants to do maximum not to go thru this again in the future.

Daninabae

Thank you so much for sharing your experience. It's really valuable.

I really have a hard time deciding on lumpectomy or mastectomy. Was the pain for double mastectomy manageable?

illimae

Also, just to be clear, I had two procedures in one OR. The breast surgeon was first doing the lumpectomy, then the plastic surgeon finished with the reduction and lift. This was planned and well coordinated at my cancer center.

marinochka

Daninabae

but you probably don't have to decide now. If you need chemo before surgery, you have plenty of time to decide.

If not-it is a different story.

She was thinking about it for months. She had time for so many opinions and for thinking about it and discussing with family.

Daninabae

Thanks! Good to know.

Daninabae

I feel the same way too.

Daninabae

Thanks illimae , good to know.

Daninabae

marinochka

I feel the same way too.

MinusTwo

Daninabe - please note - HER2+ cancers are usually treated with chemo first as several people have emphasized. PLEASE see a medical oncologist before making any decisions.

AliceBastable

I had a lumpectomy with no adjustment of the other side. They don't match, but I just stick a rolled-up child's sock in my bra on the shorter side when I want to match. I didn't have a drain, although the surgeon had mentioned it as a possibility.

MountainMia

If you want a lumpectomy with radiation but aren't sure about the asymmetry afterwards, you can always have reduction on the healthy breast after the fact. I did that, and my breasts are now more similarly sized than they were since I hit puberty. You really do not need to have double mastectomy with reconstruction, unless there is a solid medical reason to do so. Aesthetics don't necessarily require it.

Good luck.

Daninabae

MinusTwo

Thanks, will take heed.

WC3

Daninabae:

In my particular case my doctors left the choice of lumpectomy or mastectomy to me. I chose the bilateral mastectomy for a few reasons. My cancer was initially missed. I had very dense breasts and there is a history of bilateral breast cancer in my family so I was afraid of the possibility of developing cancer in my other breast and it being missed during the curative treatment window.

By the time my cancer was diagnosed, the tumor was large enough in comparison to the size of my breast that a lumpectomy would have removed a large percentage of my breast tissue and due to the shape of my breasts, symmetry achieving reconstruction would have been possibly more involved than a bilateral mastectomy. Also, if I had a lumpectomy I would have needed radiation, which was non ideal for me because my skin is thin and fragile in that region and I think I've had enough radiation for a while.

So for me the bilateral mastectomy solved a lot of problems and avoided others.

But for many people a lumpectomy is a better choice. The surgery is usually less involved, you have fewer post surgical restrictions and the recovery is faster.

Aram

Daninabae, I am sorry you are here. As others mentioned for hormone negative Her2+, chemo is recommended first. The recommendation for mastectomy vs Lumpectomy is usually based on the chemo response and genetic testing. If your genetic testing is positive, the recommendation is mastectomy otherwise usually lumpectomy and radiation.