PALB2 and surgery options - what are the guidelines?

Hi Nnatalia22

Sorry to hear that you have triple negative breast cancer and that you have a pathogenic variant on PALB2.  I'm also sorry to hear that your oncologist was dismissive of what you wanted.  Unfortunately he is probably right about your surgeon thinking the same as him as surgeons don't like to get rid of healthy tissue, but you stick to your guns after all it's your decision on what kind of surgery you want.

Wishing you the best of luck with your appointment with your surgeon.

Best wishes

Daisy53

Hi, I’m sorry to hear of your diagnosis. My own diagnosis was not triple negative, nor the PALB2 gene, but I am currently recovering from a second mastectomy, which was healthy tissue. I requested this. My first mastectomy was June 2021 and afterwards I wished that I had asked for a double mastectomy. I opted for a mastectomy right from the beginning … I just wanted it off, if you get what I mean. Anyway move forward to July 2022. I mentioned to my BCN that I wish I’d had a double mastectomy. She said that some women do feel like this, shall I book you in to see the surgeon. Two weeks later, the surgeon agreed. I requested it on symmetry, I hated being lopsided. I wear casual clothes, often with a hugging vest under, and having one boob drew attention to my single mastectomy, which I was self conscious of. I was told (quite rightly) that cancer patients came first, and it could be six or seven months a least before I was listed. Anyway, I got a surprise phone call from the hospital at the end of December - there had been a cancellation - would I like surgery in 72 hours? Yes please. 
At my two weekly post-op check (and results of pathology - yes they still check all removed healthy tissue) I asked my surgeon if she would have done a double mastectomy if I had requested it. She said she would have said no, but may, and only may, have considered it at the end of my chemo (which was five months before surgery). However, she confirmed something that I had read, and that was that the healing time for a double mastectomy is longer than for a single one. I also had an axillary clearance, which wouldn’t have helped, and there was a possibility (she said) that this could have delayed radiotherapy. Well, I would not have wanted that, so I am confident that I would have gone ahead with a single mastectomy, knowing that information. 
That’s just me though. I completely get why you feel the way you do. Hopefully someone else will come on who has had a diagnosis like yourself. Xx

Hi there,

I have triple negative breast cancer and on on treatment now - no surgery yet as having chemo before surgery. I have found out today that I have the PALB2 gene. I haven’t had any calculations done yet. It’s so much to process isnt it? One thing after another.

I saw my breast surgeon today and she went through various options including non affected breast being removed but not at the same time as in her opinion it is best for the body to be as healed and well as it can be before second operation. She also said that after chemo the immune system is so compromised that the body really does need tome to recover.

What a whirl wind it all is - I hope you are ok and would be interested to know where you are up to if you didn't mind.

Love Jan x

Hi Jan,

I'm sorry you also find yourself in this situation. It's a lot to process. 

In my case, my oncologist was keen on me doing surgery on my cancer side only, my breast surgeon and my breast care nurse advocated for me in their MDT to move forward with the bilateral mastectomy. I had to talk with a psychologist also to get the approval.

I have always had multiple benign cysts on my breast, until the moment of my surgery I could feel various lumps on my good and bad breasts. This for me was very important to be heard, otherwise if I'd ve left my good side, touching and feeling lumps all the time will trigger me to cancer land frequently.

Having only one side operated was never an option for me in my mind. In the NHS your case is urgent when you have cancer, once that is removed you could be waiting 1, 2 + years to get the procedure done on the other breast. 

I had my surgery last week. It took me some time to decide and with other things in the middle, surgery was 8 weeks after chemo (not ideal, but it was that time frame that fitted for me).

So I went for both breasts and got implants. I wanted one op and one recovery and to then move on with my life, with whatever trauma I have left to deal with.

I also live alone and my family is in another country, so the moment I'm getting help is now.

I'm recovering. Physically it is tough, your skin is numb but you have electric shocks from the nerves, swollen and it is painful, not going to lie, having drains is also uncomfortable, the shape is different and some parts are not quite right. I'm not there yet to say I''m happy with my new breasts, I will need time to grieve and process, but I'm happy I'm done and had removed all my breast tissue.

All I can say is that your heart already made up the decision it wants. There's no wrong decision here, nothing to regret. And whatever happens, it's what it's meant to be for you. You can hear so many other women and similar experiences and yet yours is unique to you.

I wish you all the best in your treatment. And feel free to contact me again anytime you want.

Natalia xx

Thank you for replying so quickly - bless you for that. Im still so early in the process - for some reason I’m not that devastated - maybe I’m in denial? For me nothing could beat the initial trauma of the triple negative breast cancer which I found so overwhelming.

I’m 59 so maybe my decisions also will be guided by that. I’m quite small so I don’t think I would go for reconstruction. I certainly will ask the question of how long it would take for the second surgery if I were to opt for that! So thanks for the heads up on this potential issue.

You sound like a brave woman going through all of this living alone with family in another country - I hope you have the support of lovely friends.

Jan x