Dis Breast Cancer Survivors Part IV - GAGWTA

[lovethattink]

I don’t wear a prosthetic. I’m completely lopsided. But I didn’t want any additional surgery. It’s been 8 years since the surgery. Sometimes I wished I had done surgery because I’d like them even. But I haven’t had too much trouble with swim suits. The most noticeable to me is that they did a lift with the surgery, so the “normal” one droops in comparison.

 

[Christine]

Depending on what type of reconstruction your friend chooses (flap surgery is very involved), a simultaneous mastectomy and double reconstruction is a lot of surgery.

Yeah, it sounds like it. I'm sure we'll get more info on Friday after the consult.

 

[snappy]

Yeah, it sounds like it. I'm sure we'll get more info on Friday after the consult.

Good luck to your friend. This thread is a good source of support for survivors. Glad you posted. If I can ever help your friend in any way, let me know.

 

[Christine]

Good luck to your friend. This thread is a good source of support for survivors. Glad you posted. If I can ever help your friend in any way, let me know.

Will do. She's not active here so I can't point her in this direction. I've pushed her to use some of the reddit subs and I think they've been helpful, but reddit can be odd sometimes as far as personalities.

 

[snappy]

Will do. She's not active here so I can't point her in this direction. I've pushed her to use some of the reddit subs and I think they've been helpful, but reddit can be odd sometimes as far as personalities.

In person support is ideal. I was in a great support for years, there was a local non-profit called Cancer Services that was on a list I was given when I was discharged after surgery. The non-profit had a breast cancer group that met weekly at lunch. Where I live now, I am in a newish group sponsored by a different non-profit, based out of TN, and we actually meet twice a week for exercise, once a week for an emotional support session conducted via zoom, and we had a 6 week nutritional guidelines program conducted by a nutritionist. They have all been helpful to me, even 20 years out. With Zoom, I find the support even more accessible and easy. Even when you travel, you can participate. Modern tech!!

When the time is right, you could suggest that your friend search out local support options. Hospital staff can be great resources.

 

[#1hoosierfan]

Will do. She's not active here so I can't point her in this direction. I've pushed her to use some of the reddit subs and I think they've been helpful, but reddit can be odd sometimes as far as personalities.

I do agree Reddit can be interesting. I have found many of the women on the breast cancer page to be incredibly knowledgeable about treatments and options, though. Lots of people post there too. The search feature is very helpful.

 

[luvmarypoppins]

Good wishes and prayers continue to follow you, LMP. 's You are such a fighter, LMP!!

How are those boys of yours I met at the Swan so many years ago doing?

Good wishes and prayers are with you also, @#1hoosierfan, for continued remission and good MTI results next week. And I've mentioned it here over the years that my wife Marie was Stage 3 with I think 17 lymph node involvement (if I have that number wrong, @Pea-n-Me will correct me) back in 1998. Last month she completed 26 years in remission as we both celebrated that milestone along with our 53rd anniversary. And she is still looking mighty fine, going strong.

My best, @#1hoosierfan

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Dan - Thanks for asking. The older one is married, an engineer and loves fishing. His wife wants to be child free.
Younger one is the nurse practitioner. Lives with us but is not here a lot. Went to Greece and travels a lot.
Love your picture!

 

[luvmarypoppins]

Thinking of you all for awareness month.
Newest update.
Gosh they don’t waste time around here.
I will be seeing a head and neck oncologist from Sloan next Friday at the office out here. Hooray! Trying to look this dr. up but the only one I see is from MD Anderson. Maybe he moved here? They are trying to get one of my reports from my nyc surgery. So much paperwork. I could tell the dr. What it said. Absolutely nothing. That was a big problem we had with that pathologist. Even my endo couldn’t believe it and another fb group I am in and the girl had the same pathologist and bare minimum report.
Say some . GAGWTA

 

[Dan Murphy]

Dan - Thanks for asking. The older one is married, an engineer and loves fishing. His wife wants to be child free.
Younger one is the nurse practitioner. Lives with us but is not here a lot. Went to Greece and travels a lot.
Love your picture!

That's great, LMP. Good kids!!!

 

[nene0182]

Yeah, it sounds like it. I'm sure we'll get more info on Friday after the consult.

Choosing a surgery is such a big decision and I’m not convinced anyone ever feels 100% confident in the decision they make. I had a double mastectomy with immediate reconstruction on 8/20. My doctors kept pushing me for a lumpectomy but I chose a double mastectomy. I’ll still need at least one more surgery down the road. I was diagnosed in Jan with stage 1 Triple Negative IDC.

 

[Christine]

Choosing a surgery is such a big decision and I’m not convinced anyone ever feels 100% confident in the decision they make. I had a double mastectomy with immediate reconstruction on 8/20. My doctors kept pushing me for a lumpectomy but I chose a double mastectomy. I’ll still need at least one more surgery down the road. I was diagnosed in Jan with stage 1 Triple Negative IDC.

That must have been quite some surgery. How do they decide to do immediate reconstruction? I don't think this was offered to her. She will have expanders put in and it will be a few months I think. She was supposed to get all the info yesterday but the reconstructive surgeon had to cancel her appointment as she had surgeries running late, so she's now on the Monday schedule.

 

[Grace&Carolinesmom]

Choosing a surgery is such a big decision and I’m not convinced anyone ever feels 100% confident in the decision they make

I agree with this statement. I chose to do a lumpectomy for my TNBC but I second guess myself all the time.

In 2021, when I was diagnosed and made the decision, I wasn't sure I was ready for a double mastectomy and didn't want to make a quick decision out of fear. I decided to do a lumpectomy and if my cancer returns, I would then do a mastectomy. Although I am currently cancer-free, I just don't feel the same about my breasts anymore. I no longer see them as a positive reflection of my femininity but as just worrisome tissue. If I do someday decide on a DM, I will either just stay flat chested or do the Goldilocks procedure as a pp chose.

It really is such a personal choice for every woman going through BCs of all types. There is no absolute black and white.....it feels so gray.

 

[Christine]

I agree with this statement. I chose to do a lumpectomy for my TNBC but I second guess myself all the time.

In 2021, when I was diagnosed and made the decision, I wasn't sure I was ready for a double mastectomy and didn't want to make a quick decision out of fear. I decided to do a lumpectomy and if my cancer returns, I would then do a mastectomy. Although I am currently cancer-free, I just don't feel the same about my breasts anymore. I no longer see them as a positive reflection of my femininity but as just worrisome tissue. If I do someday decide on a DM, I will either just stay flat chested or do the Goldilocks procedure as a pp chose.

It really is such a personal choice for every woman going through BCs of all types. There is no absolute black and white.....it feels so gray.

With my friend being 59 now and always being very, very small busted, I don't thing she's ever had that "tie" to her breasts that some women, or even a younger woman, might. So that decision has been easier. I think she's just done with the trouble they have caused her. This is not her first rodeo with them, so to speak. About 10 years ago, she had a lot of suspicious stuff going on in one of them (not the same area) and led to many visits, biopsies, imaging.

I would probably make the same choice given my age and the fact that I've had 4 separate surgical biopsies (starting at age 14) for lumps that were always deemed to be weird.

 

[nene0182]

That must have been quite some surgery. How do they decide to do immediate reconstruction? I don't think this was offered to her. She will have expanders put in and it will be a few months I think. She was supposed to get all the info yesterday but the reconstructive surgeon had to cancel her appointment as she had surgeries running late, so she's now on the Monday schedule.

Recovery wasn’t horrible. I personally never needed anything more than extra strength Tylenol. I work a desk job and could have gone back probably 2 weeks after. I did opt to stay out for 5 weeks though as I needed the mental break too. 6 weeks later I feel great. The first week was the worst with the drains.

I was given the option of immediate reconstruction if I didn’t need radiation (none needed since it wasn’t in my lymph nodes and there was no residual cancer after chemo), if I was Ok staying the same size or potentially smaller (I’ve always been on the small size so that wasn’t an issue for me. I just ended up a little smaller) and if there was adequate blood flow. I went into surgery not knowing if I would wake up with expanders or implants. I had initially wanted DIEP flap surgery but in my area the closest surgeon is hours away and after some thought I decided I’d rather stay local.

 

[luvmarypoppins]

So wonderful that everyone here is so helpful with sharing info and experiences. You all encourage me with my own journey.

My new visIt was interesting talking to an oncologist from a major cancer center. They ask you so many health questions and history. This guy was young but knowledgeable. He agrees my cancer is unusual. He feels it might be slow growing but he needs to see the genetic testing from my regular onc . They sent 80 pages and it was too big to download? He talked about possible radiation and some pills that act like chemo. He said the side effects of the pills are blood clots which I already deal with so sounds like that would be a last option. He is suppose to call my reg. onc. This visit was just for his opinion but nothing will be done there. It’s the satellite office here because people just go into the city for the surgery usually. Nice that a girl from our church was our check in person.
And if that wasn’t enough I have a tear duct sack infection. This is an off and on problem from the radiation damage originally. On my 2nd round of antibiotics. He said surgery. I said no so if it doesn’t get better he will try decompressing it with a needle and culturing it. Our credit card is definitely getting a workout with meds and copays. Sigh.
GAGWTA

 

[Pea-n-Me]

Nice to see people posting here.

I agree we shouldn’t second guess ourselves. We all make the best decisions we can about treatment and surgery with the information we have at the time. And there are often lots of considerations that need to be taken into account, too.

When I was looking at all of my surgical options, I had a lot on my plate - young children, a tough physical job, a long course of treatment ahead, a limited amount of sick time, and a mortgage to pay, etc. I’d been considering a single mastectomy (the Angelina Jolie effect of double mastectomy had not come into play yet, but what was on the forefront at that time was that lumpectomy with radiation was showing the same long term survival rates as mastectomy, which cinched it for me). If I’d chosen mastectomy I would’ve done immediate reconstruction, but I knew major chest and abdominal surgery would be tough in and of itself (not that I was afraid of it but how long would I need to be out of work), since that was to happen before my extended chemo and radiation. So with all that in mind, and what G&Csmom said here, too - that if there was a recurrence I could then do mastectomy - I went for the lumpectomy with radiation.

I have no regrets, really - 21 years and I am still here, having beaten aggressive triple negative cancer despite positive nodes and everything with the treatment I chose! The only thing is that I have scar tissue in that breast that causes discomfort (and that can happen with any surgery). And, of course, a tummy tuck would’ve been nice after having twins!

But yes, very grateful it all worked out.

Each person’s medical and life circumstances are unique.

Sending hugs to everyone with decisions to make and either in treatment or past it.

Lmp I hope things are going ok for you.
Thanks for keeping us updated. You have come a long way and been through a lot! Strong lady!

 

[BayouQueen]

Nice to see people posting here.

I agree we shouldn’t second guess ourselves. We all make the best decisions we can about treatment and surgery with the information we have at the time. And there are often lots of considerations that need to be taken into account, too.

When I was looking at all of my surgical options, I had a lot on my plate - young children, a tough physical job, a long course of treatment ahead, a limited amount of sick time, and a mortgage to pay, etc. I’d been considering a single mastectomy (the Angelina Jolie effect of double mastectomy had not come into play yet, but what was on the forefront at that time was that lumpectomy with radiation was showing the same long term survival rates as mastectomy, which cinched it for me). If I’d chosen mastectomy I would’ve done immediate reconstruction, but I knew major chest and abdominal surgery would be tough in and of itself (not that I was afraid of it but how long would I need to be out of work), since that was to happen before my extended chemo and radiation. So with all that in mind, and what G&Csmom said here, too - that if there was a recurrence I could then do mastectomy - I went for the lumpectomy with radiation.

I have no regrets, really - 21 years and I am still here, having beaten aggressive triple negative cancer despite positive nodes and everything with the treatment I chose! The only thing is that I have scar tissue in that breast that causes discomfort (and that can happen with any surgery). And, of course, a tummy tuck would’ve been nice after having twins!

But yes, very grateful it all worked out.

Each person’s medical and life circumstances are unique.

Sending hugs to everyone with decisions to make and either in treatment or past it.

Lmp I hope things are going ok for you.
Thanks for keeping us updated. You have come a long way and been through a lot! Strong lady!

Pea, your story is really inspiring. That was a tough cancer you had and amazing recovery. It gives hope to everybody confronting bc.

 

[Pea-n-Me]

Pea, your story is really inspiring. That was a tough cancer you had and amazing recovery. It gives hope to everybody confronting bc.

That’s so nice of you to say, BQ. Thank you.

I myself have been inspired by so many here and IRL too.

We’re all in this together!

 

[#1hoosierfan]

LMP - thank you for the update. I hope that tear duct resolves. Bless your heart with one more thing to deal with.

 

[Christine]

Good morning all! Question on behalf of my friend (double mastectomy about 10 days ago).

Her surgeon recently prescribed nitro-bid ointment for some tissue saving hopes. She had a weird side effect from it and we were at the ER last night. She is going to be talking more with her surgeon today about continuing it but I thought I'd check in to see if anyone here had experience with it. If so, I can go into more detail. TIA!