Dis Breast Cancer Survivors Part IV - GAGWTA

[Grace&Carolinesmom]

Hisgirl -- So glad to hear your surgery went splendidly and your tests came back favorably. I will definitely chat you up if I decide to get a mastectomy down the road. That goldilocks procedure sounds much less involved than others I have read about.

lmp -- So sad to hear of your setback. Sending prayers that whatever it is can be contained and successfully treated once you have more knowledge of its scope. BIG HUGS!!!

 

[Pea-n-Me]

GAGWTA (Greetings and good wishes to all.) Glad to see people posting.

Happy for good news and sad for tough news. Keeping you in my prayers, lmp. Hopefully they can find a suitable treatment for you.

I had mammograms this month, all was well even though I have a lot of scar tissue build up. This year is the 20th anniversary of my diagnosis, surgery, chemo and radiation.

 

[luvmarypoppins]

Hope everyone is doing well
All my cardiology things are done. Good bp, echo and ekg. He said I only have to see him twice a year now. Hooray!
Going for the ct’s next Thursday.
Our new used van is nice. I feel like we were in the auto tech dark ages before!
I already have my pcp and vascular surgeon visits in November scheduled.
The journey slowly continues.
GAGWTA

 

[luvmarypoppins]

The dr. Called about my ct. she said my neck looks good?, the lung mass thing has not shrunk (pulmonologist said it most likely would), now there is a cyst on my kidney. I don’t know if this is the kidney the vascular surgeon put a stint in.
She wants to do another cancer marker blood test mid November. More questions than answers it seems right now.
GAGWTA

 

[Grace&Carolinesmom]

lmp - Sending positive vibes your way. It sounds like you have a great team of doctors that are checking all of your systems and investigating anything that is out of the ordinary. Great doctors are a blessing!!

 

[#1hoosierfan]

Very long story short- I had a double mastectomy in June 2022 and had expanders placed. I developed MRSA in Sept 2022 and had to have them removed. I finished radiation in November 2022 and had to wait 6 months to have expanders put back in. Surgery in June 2023 to have them placed. Recovery was tough and had drains for over 4 weeks.

Yesterday I noticed a place opened up at the incision site and it was black. Went to the surgeon today and the expander is exposed. It has to be removed. She said I’m not a candidate to have expanders again.

I need to decide by Friday if I want her to do an aesthetic flat closure or leave skin to do a DIEP flap. Does anyone have experience with either? I have read the DIEP flap recovery is rough. I’m leaning towards flat to finally be done with all of this.

 

[robinb]

@luvmarypoppins, sorry you have more question than answers. That's a frustrating place to be. It sounds like your doctors are on the ball, though. Sending healing hugs your way.

@#1hoosierfan, I'm sorry the expander didn't work for you . I've not had experience with a mastectomy. I know others here have and maybe they can give you some insight.

GAGWTA!

 

[luvmarypoppins]

#hoosierfsn - sorry to hear about your difficulties. I don’t know if I am remembering correctly but I think @snappy had this procedure?
If she sees this maybe she can chime in. Miss her posting lately!
Wishing you all the best!

 

[Pea-n-Me]

@snappy has been a busy lady with a big move and a big family wedding, etc., so she hasn’t been posting much. But I’m sure she’ll chime in at some point. I don’t think she had expanders but I could be wrong.

Very long story short- I had a double mastectomy in June 2022 and had expanders placed. I developed MRSA in Sept 2022 and had to have them removed. I finished radiation in November 2022 and had to wait 6 months to have expanders put back in. Surgery in June 2023 to have them placed. Recovery was tough and had drains for over 4 weeks.

Yesterday I noticed a place opened up at the incision site and it was black. Went to the surgeon today and the expander is exposed. It has to be removed. She said I’m not a candidate to have expanders again.

I need to decide by Friday if I want her to do an aesthetic flat closure or leave skin to do a DIEP flap. Does anyone have experience with either? I have read the DIEP flap recovery is rough. I’m leaning towards flat to finally be done with all of this.

Yikes. What a nightmare. (Said as a nurse.) I’m sorry that happened. Was the black area necrotic? Or was the black the hardware that was exposed? Doing a tram flap was one of my surgical options (in 2003/04, so much has probably changed since then), but I went for the lumpectomy with radiation instead (mainly because I was still working through extensive treatment, had two little ones at home and had already used up a lot of my sick time, etc.). I’m sorry I can’t be of more help. I hope others here who’ve had this or similar procedures chime in for you. (This thread isn’t as active as it once was. I imagine people went over to FB or other groups.) What did the surgeon say about it? Did she offer any advice? I don’t blame you for wanting to be done with it. You’ve been through an awful lot already and had ongoing difficulties and disappointments. And these infections and surgical revisions are so tough to deal with.

The dr. Called about my ct. she said my neck looks good?, the lung mass thing has not shrunk (pulmonologist said it most likely would), now there is a cyst on my kidney. I don’t know if this is the kidney the vascular surgeon put a stint in.
She wants to do another cancer marker blood test mid November. More questions than answers it seems right now.
GAGWTA

Sounds like things are stable, anyway. That’s good! Hopefully the kidney cyst is nothing serious.

GAGWTA

 

[Hisgirl]

@#1hoosierfan so sorry that happened!! My friend had the tummy fat surgery when she had BC. It was a long surgery but her's was done at the same time as the mastectomy. She recovered well and has had only some nerve pain but was able to deal with that.
I had a mastectomy in August and got the goldilocks reconstruction. That one uses the breast skin to make breast mounds, mostly a full A cup. I hope you are able to get things worked out. There are some good facebook groups offering support for each kind of reconstruction.

 

[snappy]

Very long story short- I had a double mastectomy in June 2022 and had expanders placed. I developed MRSA in Sept 2022 and had to have them removed. I finished radiation in November 2022 and had to wait 6 months to have expanders put back in. Surgery in June 2023 to have them placed. Recovery was tough and had drains for over 4 weeks.

Yesterday I noticed a place opened up at the incision site and it was black. Went to the surgeon today and the expander is exposed. It has to be removed. She said I’m not a candidate to have expanders again.

I need to decide by Friday if I want her to do an aesthetic flat closure or leave skin to do a DIEP flap. Does anyone have experience with either? I have read the DIEP flap recovery is rough. I’m leaning towards flat to finally be done with all of this.

Sorry to hear about your situation. My experience: mastectomy 5/2004, with DIEP flap 8/2006. I imagine there have been many changes/improvements in the intervening period.

I did not have chemo or radiation, only the mastectomy. I was not a candidate for immediate reconstruction, thus the delay. I saw 3 plastic surgeons, the third one had a lot of experience with the DIEP procedure. My unaffected breast (no cancer) was large so the plan was to remove a flap from my abdomen, attach the flap via an artery and vein in muscle tissue in the flap to an artery and vein under my arm, and reduce the unaffected breast to achieve symmetry with the new breast.

I was in the hospital for 2 days. The hospital room was kept very warm to encourage the blood flow to the flap. I had no problems with the flap or the reduction of the unaffected breast.

The incision to the abdomen was extensive horizontally. I had to wear a very large binder for a month since the DIEP at that time required harvesting muscle, and the idea is to protect the stomach area with the compromised muscle. The only place I had pain was the abdomen, and it was very painful on the pain scale. I was sidelined for several months, but I was also almost 53 years old and not working at the time. I took the pain pills for several days, had terrible reaction to it (constipation) so I managed with a lot of Tylenol after that.

I would ask the surgeon doing the DIEP what are the chances for DIEP failure. I remember having to sign paperwork disclosing the potential for this happening. Basically necrosis sets in and the flap has to be removed. I think the percentage for failure was pretty low, but with your previous issue of having to have the expanders removed, I would investigate this likelihood thoroughly. I would ask if having had radiation makes failure more likely.

A survivor in my support group had a double mastectomy and opted for no reconstruction. I think with a double mastectomy this is a viable choice. It is when you have a single mastectomy and have a large breast remaining on the unaffected side that you have more of a decision to make, including whether to remove a healthy breast. This survivor I mentioned seemed comfortable with her choice and chose to wear blazers a lot. I would not have known that she was flat if she had not disclosed it.

Good luck with your decision. Please feel free to post questions here or pm me if you would prefer. Regardless, please let us know how you do with your recovery.

Edited this to add that it has been just over 17 years, and i do not regret having the DIEP. Both my breast cancer surgeon and my GYN encouraged me to go forward with the reconstruction. It helped me feel more comfortable in my own skin.

 

[Pea-n-Me]

Great feedback, guys! Thank you.

Asking for others to chime in, as well. We need to stick together! Even if it’s just here on the Dis!

The thing I forgot to mention in my post last night is that, at the time, lumpectomy w radiation and mastectomy had essentially the same survival rates, which is why I felt comfortable having the lumpectomy with radiation. If my cancer had come back, the plan was that I would then do a mastectomy. Knock on wood, there has not been a need yet.

I guess my point is that, survival was the ultimate thing I was concerned with at that point (along with so many other things). I think that’s still something to keep in mind, for sure. Survival from the cancer itself is improved today, but when someone has a lot of health issues related to the treatment itself, that’s still something to be considered, as it can not only affect survival, but quality of life. This is something we look at in all aspects of health care, not just cancer care.

For instance, someone I know has an unusual heart blockage. You’d think it would be easily fixable, but the treatment for it can actually cause more problems than the blockage itself. So for now, they’re holding off. It’s a crap shoot.

And each case, no matter what it is, really is very unique.

@hoosierfan, you survived the cancer, thank God! You tried these other things, and they didn’t work, unfortunately. You could keep trying further interventions, but it sounds like the tissue in the area may be compromised with all its been through. Maybe letting it settle out and moving on might be the best thing for you right now. But only you can decide that. Idk if it’s possible to go back in down the road, say, in a year or two, should you choose to. Even if your current surgeon won’t agree to it, that doesn’t mean there won’t necessarily be someone who could do it successfully. But that is neither here nor there - just something to keep in the back of your mind. You could then concentrate on being your best self without medical hassles for a while, and surely that would feel really good.

FWIW I take care of plenty of women whose breasts have been removed and not replaced.

Sending good thoughts for you and in coming to your decisions. GAGWTA

 

[#1hoosierfan]

Wow! Thank you so much to everyone that has shared and encouraged. I really and truly appreciate it.

I have joined FB groups for both DIEP flap and flat. I plan to look thru those tonight and tomorrow. I’m making a list of questions for my surgeon. I see her Friday. I plan to take DH with me as a second set of ears.

 

[luvmarypoppins]

broke femur. Having surgery with orthopedic oncologist to rule out bone cancer .
Please pray.

 

[snappy]

Luvmarypoppins, I am praying for you. When is your surgery?

 

[Pea-n-Me]

Luvmarypoppins, I am praying for you. When is your surgery?

It sounds like she’s probably in the ER, and surgery will be soon.

Sending prayers for you, lmp. How awful!

 

[Grace&Carolinesmom]

#1hoosierfan - Sorry to hear your breast reconstruction has been such a long, arduous journey. I hope your plastic surgeon was able to answer your questions and give you options that will work best for your body. I have not had a mastectomy as I chose lumpectomy, chemo and radiation. If my TNBC returns, I will do a mastectomy and possibly a goldilocks procedure like Hisgirl or just a flat closure. I was considering a DIEP flap in the future but I am not sure I will be a candidate for that as I have since been diagnosed with Grover's disease. The treatment I am currently using to control those symptoms involves 2 injections in my belly every other week which I assume is compromising the viability of that tissue for a DIEP. Please post and let us know your decision and progress.

lmp - Sending prayers your way!! I can't imagine the pain you are going through with such a large bone break.

 

[Pea-n-Me]

I hope you are doing better today, lmp. Update when you can. I know your husband and sons are seeing that you get good care.

Hoosierfan, hoping that you came to your decision with peace. Let us know how you’re doing, and don’t be a stranger!

 

[#1hoosierfan]

I went to the surgeon yesterday, and I am opting to go aesthetic flat. The DIEP would involve at least 2 surgeries with at least an overnight hospital stay and 6 week recovery time each.

The flat surgery will only be an outpatient surgery and 2 week recovery.

It is 2 years to the week that I was diagnosed with breast cancer. I have been thru a lot and I’m ready to be done with surgeries.

 

[Grace&Carolinesmom]

I went to the surgeon yesterday, and I am opting to go aesthetic flat. The DIEP would involve at least 2 surgeries with at least an overnight hospital stay and 6 week recovery time each.

The flat surgery will only be an outpatient surgery and 2 week recovery.

It is 2 years to the week that I was diagnosed with breast cancer. I have been thru a lot and I’m ready to be done with surgeries.

So happy for you to have a plan with an easier recovery. You have been through so much physically and mentally. Cheers to you!!!! Keep us posted as surgery nears.