HER2 Support Group Forums - View Single Post - failed reconstruction following prophylactic mastectomy

JessicaV · 01-11-2015, 11:48 PM

Hi Rinaina
I have seen problem like this happen to a number of women on the breast cancer scene, including the lovely woman I mentioned in a previous email.

I think women don't get a guide, a flow chart or a road map showing how the different choices we make and how the outcomes of those choices then affect the next set of options, eg
1) that lumpectomy plus radiotherapy now means that
a)if it proves sufficient for clear margins etc and
b)if there is no local or regional recurrence and
c) if everything heals well,
you will be left with two fairly matching breasts and if this is medically recommended and this outcome is important to you, this is a good choice for you so long as the following is fine with you too:

2)if you later need more breast surgery,unless it is a new primary cancer in the other breast, it will have to be a mastectomy or double mastectomy, and any reconstruction will be done with skin that has been damaged by the radiation, so the option of expanders plus implants is not going to be a very workable option for you. So they have these more complex surgical processes available including deip and tram etc. If you have those done to both breasts after double mastectomy,
b)if there is no further local or regional recurrence and
c) if everything heals well,
you will again be left with two fairly matching breasts.

3)And that if you only have one breast mastectomy done, you may need several extra surgeries to get them to match, and even if you have two done, you may need several extra surgeries to get them to match.

It bothers me because this could be spelt out by surgeons and oncologists working together, providing flow charts of possibilities/probabilities. But it isn't provided, so we are not able to make choices in full knowledge, and are not prepared for the possible outcomes. We don't discover these things until suddenly we fall into the middle of them and find it incredibly distressing and also blame ourselves for not having found out enough info, and making a choice that ends up causing us distress.
I don't think you dropped the ball at all. I really feel for you and what you are going through at the moment. I do believe that you should have had better info from your team in a way you could make sense of and work with in the trauma of the moment.
But once you get together the energy and umph to get back on the horse, with a good surgeon, you can get there and get what you want and deserve.
best wishes
Jessica

01-11-2015, 11:48 PM	#20
JessicaV Senior Member Join Date: Apr 2014 Posts: 206	Re: failed reconstruction following prophylactic mastectomy Hi Rinaina I have seen problem like this happen to a number of women on the breast cancer scene, including the lovely woman I mentioned in a previous email. I think women don't get a guide, a flow chart or a road map showing how the different choices we make and how the outcomes of those choices then affect the next set of options, eg 1) that lumpectomy plus radiotherapy now means that a)if it proves sufficient for clear margins etc and b)if there is no local or regional recurrence and c) if everything heals well, you will be left with two fairly matching breasts and if this is medically recommended and this outcome is important to you, this is a good choice for you so long as the following is fine with you too: 2)if you later need more breast surgery,unless it is a new primary cancer in the other breast, it will have to be a mastectomy or double mastectomy, and any reconstruction will be done with skin that has been damaged by the radiation, so the option of expanders plus implants is not going to be a very workable option for you. So they have these more complex surgical processes available including deip and tram etc. If you have those done to both breasts after double mastectomy, b)if there is no further local or regional recurrence and c) if everything heals well, you will again be left with two fairly matching breasts. 3)And that if you only have one breast mastectomy done, you may need several extra surgeries to get them to match, and even if you have two done, you may need several extra surgeries to get them to match. It bothers me because this could be spelt out by surgeons and oncologists working together, providing flow charts of possibilities/probabilities. But it isn't provided, so we are not able to make choices in full knowledge, and are not prepared for the possible outcomes. We don't discover these things until suddenly we fall into the middle of them and find it incredibly distressing and also blame ourselves for not having found out enough info, and making a choice that ends up causing us distress. I don't think you dropped the ball at all. I really feel for you and what you are going through at the moment. I do believe that you should have had better info from your team in a way you could make sense of and work with in the trauma of the moment. But once you get together the energy and umph to get back on the horse, with a good surgeon, you can get there and get what you want and deserve. best wishes Jessica __________________ 1997-2004 many cysts, many MG & U/S: polycystic breasts. Sept 2013 found lump,Cyst?? forgot lump. Dec 2013 GP check, Referred for U/S, MG,FNA. 7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail." Cancelled my psych clients for the week. 8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon. Cancelled my psych clients for the month. 13 Jan 14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan, 16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done. 19 Jan 14 discharged home with 1 drain. 22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment. 26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans. 30 Jan 14 HER2+ high amplification, 13 gene copies per cell. 21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up. Cancelled my psych clients for 6 months. Feb 14 First MUGA test: 71%, First C15.3 test: 20 7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and Claritin, reflux/indigestion helped by Somac. July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily. Sept 14 Second MUGA test: 69% Cancelled my psych clients for 2014 Dec 14 Third MUGA test: 70% Second C15.3 test : 20 Cognitive fatigue delays return to work. March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring. July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing Aug 2015 Heart good, no evidence of cancer, just Fatigue. May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets. Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.