Fairly new diagnosis surgery questions

Christabel03

Hello Gosh its taken me a long time to make the decision to get myself here but finally after lurking around here I am!! 
I was diagnosed in October 2021 out of the blue as I am sure we all were and as we all know life gets turned on its head so fast. I wouldn't look at any of my scans or paperwork and basically didn't even know the extent of my bc until just recently as I didn't want to know about it. I kind of just started turning up to appointments and doing as I was told. I started with chemo 4 x AC done thank goodness and am now onto the 12 x paclitaxel and a couple of others thrown in as well (can't remember the names the brain fog is real hey!!) and am about to see my surgeon. I already know that I am to lose my left breast there is too much for them to do a lumpectomy apparently.                                                 

My question to those who have travelled this road already is, could there be a suggestion to take the right breast even though it is confirmed that one is all clear? Do surgeons take into consideration anxiety and the chance of recurrence if you leave one behind? I haven't had any genetic testing yet, this is to be discussed I've been told. The way I am feeling at the moment is I would prefer both off, I guess you start to think that you just want all of this gone from your body. I just have no idea what to expect when I do see the surgeon for the first time and thought this could be a good place to start for help? I hope I have put this in the right category, happy to be directed elsewhere if I am not in the right place!
Thank you in advance 

Afraser

Hi @Christabel03

Welcome! We’d all rather not be here and we fully understand the shock to the system of a bc diagnosis. But here you are and I hope the contact proves helpful.

As you will discover, bc is not one thing, it’s many and as the precise nature of our bc varies, so does our treatment and our options. Like you, I had cancer in my left breast - nine years ago, it was more common to do surgery first, chemo second (like you, A/C and Paclitaxel). I had a very short time (3 days) from confirmation of diagnosis to surgery (mastectomy) so discussions about my right breast came much later! But keeping my breast ultimately came down to no family history of cancer at all, no known problematic genes and my oncologist’s view that if I were to get cancer again, it would as easily be elsewhere as in my right breast. If any of those matters had been different, I might have made a different decision. I decided against reconstruction. But if you plan reconstruction, then it’s worth thinking about the degree of surgery, what type of reconstruction etc. You can be referred to a specific part of this website for more detailed experiences and information. As you mention, genetic testing is also an option you may pursue. We all end up being a lot more informed about a subject that we never wanted to know much about, but that’s the only way to decide what’s best for you! Best wishes and good luck with your chemo. 

Christabel03

Hello @Afraser
Thank you so much for your response. I was surprised not to be having surgery first when I received my diagnosis, but then again I had no idea what I was walking into. The chemo seems never ending at the moment and turning up weekly is a challenge.  I wish I was doing better but I feel like I am doing the best I can. There is certainly a lot of tears. 
I am sure there will be lots to discuss with the surgeon and I guess a lot of things will weigh in on the decision in the end. 
Thank you for the well wishes xx

Afraser

@Christabel03

Ah yes, the weekly Taxol is a bit of a pain, they put Phenergan in with mine (no idea why, I was never nauseous) and half the time I was half asleep! The best you can do is the very best any of us can do, it gets better. There’ll be a day when it all seems a long time ago. Making a list of things to ask can help, remember your medical team know a lot but they don’t know what you don’t know. There’s no such thing in this caper as a silly question. Best wishes. 

Julez1958

Hi @Christabel03
This is the $60 million question!
I am a 63 year old (62 when diagnosed) and went from talk of a lumpectomy to a mastectomy ( my tumour was initially thought to be 4.5 cm but turned out to be 5.5 cm and lobular which is more like a spider web than a neat lump) and then to discussion about a double mastectomy.
At first I thought “why get rid of a perfectly healthy breast “ especially as I did not have any genetic predisposition to breast cancer.
My breast cancer surgeon said there was an approx 10 percent chance of me getting breast cancer in the other breast and asked “ how risk averse are you”?
The answer was “ very”.
I am the sort of person who always pays extra to get no excess on the insurance policy when I hire a car.
An added factor for me was I wanted to have the DIEP flap reconstruction ( where you use your tummy fat) and you can only do that once .
I stressed a lot about the decision and talked to lots of people including my lovely female GP, a friend of a friend who had the double mastectomy and DIEP flap reconstruction and also ladies on here and on the private choosing breast reconstruction group on here (you may wish you join.)
Once I made the decision to “ go the double” I felt a huge sense of relief and had the surgery in August last year .
I am very happy with my decision.
But as my surgeon said , it’s extremely personal and only you can make the decision.
I had my surgery in the private system and even though I had private health insurance my out of pockets were steep.
I  don’t regret  it one bit though and figure I haven’t spent much on holidays since the advent of Covid, so why not spend it on this?
Hope that is of some assistance.
Take care.🌺

Christabel03

Hello @Julez1958
Thank you that is certainly some assistance, and very helpful. I will take a look a the other group too if I can find my way I do agree it is such a personal decision but it really is helpful to hear from others along the way, I am only just realising that now instead of going it alone for like I have been for the past few months. 
Thank you again xx

Julez1958

If you have trouble joining the private group give the helpline at the top of the page a call😊