So much to take in....

LuluJoy

I was diagnosed on Tuesday 3rd December with Grade 3 Triple negative invasive ductal carcinoma (1cm).  Activated lymph but no cancer on fine needle (so far).  I am 49.  Lump was not palpable and picked up on screening.  Meeting with surgeon on Tuesday and likely surgery on Wednesday.  Trying to work out if there is any reason NOT to opt for double mastectomy - whatever the recommendation?  Feel there will just be a ticking time bomb if not.  Likely to be offered wide lumpectomy but although only grappling with this for less than a week, feel mastectomy (ideally with reconstruction as soon as practicable) will give much greater long term peace of mind and help prevent reoccurrence.  Would love to hear from anyone who has contemplated or opted for this path. 

Zoffiel

Hi @LuluJoy
Sorry you find yourself here.
I've been on and off the breast cancer train for a while now, and I truly believe there are times when you just have to trust your gut and make sure you get your way.
I don't know anyone who has opted for a bilateral mastectomy and really regretted that choice. Yes, you can be unhappy about losing your boobs and there are a whole flotilla of things that can go wrong, both with and without reconstruction, but when we've decided we can't trust those tits, that's it.

There is little piece of mind once your body turns against you and, as I've found out, getting rid of your breasts is not a 100% certain way of preventing recurrence, but I wouldn't have done it any other way.

Good luck in the next few weeks, and if you have any resistance from your team, talk to someone else and see what they think. MXX

Afraser

I didn’t have much of an option about a mastectomy ( full or partial) but did not elect to have bilateral removal. Circumstances may have an impact (ie any family history, I had none). One option may be to have a single mastectomy and reconstruction and see how you feel. Can always elect to have the second op if you feel comfortable and your reconstruction experience has been as you would wish. As the second mastectomy is preventative, time is on your side. Best wishes for whatever you decide, it’s a hard call but most make the choice that’s right for them. 

Mantis

Hi @LuluJoy

I was 47 when I received a similar diagnosis, TNBC, 2.5cm, no nodes involved, Grade 3 (most TNBC is Grade 3).

My surgeon told me that the data shows that outcomes are no better for mastectomy vs lumpectomy plus radiation in early TNBC.

Recovery from lumpectomy is quicker than for mastectomy so time to commence chemo is shorter too.

I had testing for BRCA mutations and if that had come back positive I would have gone ahead with prophylactic mastectomy after chemo but it was negative so it was just the lumpectomy, chemo and radiation for me. I’m now 16 months post diagnosis and so far so good.

LuluJoy

Thank you everyone, the more I am talking with people, lumpectomy initially sounds good option for quicker recovery to start chemo if needed. I think BRCA testing may then follow and I can decide further from there.  Really appreciate your comments xx

jennyss

Dear @LuluJoy ,

from jennyss in Western NSW

iserbrown

Hope this link from the BCNA website gives you some clarity and an opportunity to explore the website more

https://www.bcna.org.au/understanding-breast-cancer/treatment/surgery/types-of-surgery/

Jensea65

Hi @LuluJoy,
Hopefully you have a really good med team that you trust. There is a lot to process in the early stages so I recommend just taking one thing at a time as things constantly change along the way. When I was diagnosed 12 mths ago my initial treatment discussion involved Lumpectomy, then possibly radiation. Then that quickly changed after TNBC diagnosed and 5 mths of Chemo added into the plan. Then I found out I was BRCA1 so Radiation off the table and double Mastectomy on. Its a really big head spin. I had my double mastectomy and immediate Diep recon 3 mths ago and I feel absolutely fantastic. The decision under my circumstance was incredibly worth it. What I would say though is if you are advised to go down the mastectomy path - try and get the recon done at the same time to avoid multiple surgeries down the track. 

LuluJoy

Thank you @Jensea65 - I have now had lumpectomy (on Wednesday) - trying to decide on oncologist to get next steps moving, will likely be chemo due to TNBC.  Genetic testing also done today so will deal with those results in a couple of months when they come back.  Finding it hard to choose oncologist - know how important everyone says it is to have good relationship but how do you know before you go? Glad to hear you are through the other side and feeling good 😊

strongtogether

Wishing you all the best through the chemo and Radiation.
 Take care.

Shellshocked2018_

Hi LuluJoy,
You have come to the right place for support , so firstly welcome.
None of us want to be here, but in saying that you will find a wealth of knowledge and emotional support when needed.

I was diagnosed with TNBC in October 2018, I had a partial mastectomy. ( I also questioned a double mastectomy with my surgeon), was also told that it wasn’t necessary due to early diagnosis. I also had no lump and it was picked up in a routine two yearly mammogram, so I was blown out of the water when I was told I had BC, seeing there is no history in the family.

Surgery, Chemotherapy and Radiotherapy, after a year I have finished all treatment and getting my energy levels back again.
Had my first yearly mammogram after diagnosis and treatment, was given the all clear in both breasts.
If you want to talk anytime, you can pm me privately.
Wishing you all the best, take one day at a time, Be kind to yourself, rest when needed and accept help when offered.
Sending hugs xx