Hi everyone, I am an Aussie who moved to Geneva, Switzerland in August 2013 and was diagnosed with TNBC last month. I have commenced neoadjuvant chemotherapy and after that I will have a mastectomy and radiotherapy. What a shock. A normal person one day and on the breast cancer track the next. Does anyone know when they do the genetic testing? If I have the BRCA gene(s), I would like to have a double mastectomy. I am large breasted so I think this would be more practical anyway. Any thoughts? Thanks and I would love to hear from you. I'm a long way away. Cathy

Thanks for your reply, Gillian. I had no idea it would take so long to get the results from genetic testing. If you have the BRCA1 mutation will the surgeon do a double mastectomy at your request or do you think he'd suggest it? Do you wait for the results and then have surgery? Thanks again and I hope you're as well as you can be. Cathy xx PS has your hair grown back yet?

Hi Cathy, I was diagnosed last May with TNBC & started chemo in June. I had blood taken on my 1st day of chemo that was sent off for testing. My results were back in 6 weeks. 6-8 weeks is how long it usually takes for results to come back, well, in Sydney anyway. I decided to have the bilateral mastectomy done & cancelled radiation. If you have radiation, it limits the type of surgery you can have done, so request the test ASAP. I also had the hysterectomy & oopherectomy to help prevent ovarian cancer. What a year! SO much to take in & learn is such a short amount of time. Wishing you all the best with the next steps....Sam xoxoxox

Hi Dorsey, Thanks for your feedback. I will look up the clinical guidelines and see what they say. I'm worried for my daughter (13) because there is also breast cancer on her paternal side. In Switzerland they seem to do chemotherapy before surgery; the rationale being that they can see if the tumour shrinks, and is therefore susceptible to the chemo being given, before being removed. Thanks again, Cathy

Oh Sam, you've had such a rough time. Thank you for replying to my post. It seems that here (in Switzerland) the course of treatment is different. I am to have chemo first, then a mastectomy (too many tumours for a lumpectomy) and then radiation (although radiation was proposed before it was determined that there were multiple tumours-this only showed up on the MRI). Would you normally have radiation treatment after mastectomy or would there be no need? As I write this (mastectomy, chemo,radiation, multiple tumours etc!), I can hardly believe the course my life has taken over a few short weeks. I'm sure it's the same for everyone, what a steep learning curve. I hope your health improves and that you feel some relief from the hard decisions you've had to take, Cathy xx

I was diagnosed with TNBC in 2012, had immediate bilateral mastectomy followed by chemo. My Oncologist decided we would hit it with everything we had, so then I had radiotherapy and, like Sam, a complete hysterectomy as a preventative measure. The treatment took from April until November. I have never regretted the decision to hit it hard, as there was a family history. I hope your chemo goes well - what are you having? I had Taxol/Carboplatin weekly for 12 weeks, followed by 28 rads. It is now 2 years since surgery, and no dramas - TNBC is a nasty little bug and I wanted to well and truly swat it. All the best for your treatment - stay in touch and let us know how you go. Big hug, Michelle x

Diagnosed with TNBC | BCNA Online Network

14 Replies

Yoga_nut
Member
12 years ago
Haha...I went to kindy at College du Leman ! I will PM you as this will be well off BC topic for this forum :)

Karen
Yoga_nut
Member
12 years ago
Hi Cathy ...I was diagnosed TNBC in November 2013 , had double mastectomy ( over the past 4 years I'd had 2 cysts and a benign tumour removed so to be honest they were giving me the heebie jeebies ......a double mastectomy was an easy choice for me because 4 years in a row waiting for biopsy results is just awful ....never again ) I've had the gene test , still waiting for the results ( it's been 2 months already , they said probably take 3-4) The prophylactic mastectomy side had a significant amount of atypical ductal hyperplasia so it was a bit of a time bomb as it turned out. As the cancer was small with no lymph nodes I had chemo but didn't need radiotherapy . My understanding is that if you have a lumpectomy or lymph node involvement or close to chest wall you def need radiotherapy . The doctors will certainly advise you given your own situation which isn't always clear until the time of surgery ...not helpful in the planning I know . And as something completely unrelated to BC , I was born in Geneva and went to the international school many years ago !! How do you like it there ? All the best to you :) Karen
SamzRusty
Member
12 years ago
PERSONALLY....I didn't need radiation as all my breast tissue was removed on both sides & I had no node involvement in my cancer side.

We are off to Disneyland for 2 weeks with the kids & our best friends in August. It's an FU to cancer holiday :)

Sam xoxoxox
cath7472
Member
12 years ago
Hi Michelle

Thanks for the info. Honestly, I'd rather have both off at once but there seems to be a reluctance to do this. Perhaps they might consider it for me as I'm having my chemo first. I'm not planning on having a reconstruction.

Keep well and good luck with your upcoming surgery,

Cathy
cath7472
Member
12 years ago
Thanks Sam - the whole radiation thing is confusing for me.

Where are you off to? Cathy
SamzRusty
Member
12 years ago
My bad on the rads point....

Flights & accomodation sorted. I renewed my Passport with my white hair (what was I thinking with that?!) now I'm dark again. 109 days to go....but who's counting? :)

Sam xoxoxox
Michelle_R
Member
12 years ago
Hi Cathy,

Radiation is optional after mastectomy - on the good side I had clear margins, clear nodes and tumour under 5cms. On the bad side I had Grade 3 very aggressive, possible lymphovascular involvement. My Radiation Oncologist recommended it because of the possible lymphovascular involvement.

My radiation was very shallow across the scar area on left side, avoiding the lung. My choice was not to have reconstruction - if you want to have recon then better to avoid rads. Sam had recon and looks amazing (got your visas yet Sam?) It will be your choice.

Stay in touch - we are all here for you. Michelle xx
cath7472
Member
12 years ago
Hi Michelle,

Thanks for your reply. I gather that you are BRCA1 positive?

I am tolerating my chemo well so far, just a bit of nausea and exhaustion. I'm on carboplatin, paclitaxel, doxorubicin and avastin (bevacizumab).

Where did you have your radiation? From Sam's post I gather if you have a mastectomy you don't need radiotherapy?

I would like to have a double mastectomy for safety plus I'm large breasted and would be/feel lopsided I think.

So glad to hear all is good at the two year mark. Triple negative is a bit scary,

Big hug back, Cathy xx
SamzRusty
Member
12 years ago
If you have a mastectomy, there is no need for radiation....there's nothing left to zap ;)

It has been tough, but tougher if I didn't find the lump when I did, I feel I'm pretty lucky.

I worry about my kids too, 15 & 7 now. I'm sticking on the side of hope, there's a 50/50 chance that they've got the gene...I'm leaning on the side of 50 that they don't.

Sam xoxoxoxo
Michelle_R
Member
12 years ago
I was diagnosed with TNBC in 2012, had immediate bilateral mastectomy followed by chemo. My Oncologist decided we would hit it with everything we had, so then I had radiotherapy and, like Sam, a complete hysterectomy as a preventative measure. The treatment took from April until November.

I have never regretted the decision to hit it hard, as there was a family history. I hope your chemo goes well - what are you having? I had Taxol/Carboplatin weekly for 12 weeks, followed by 28 rads. It is now 2 years since surgery, and no dramas - TNBC is a nasty little bug and I wanted to well and truly swat it.

All the best for your treatment - stay in touch and let us know how you go.

Big hug, Michelle x