Double Masectomy or radiation

Anita78

Hi,

I'm new to this forum, I'm 42 and was diagnosed with early breast cancer 7 weeks ago. Hormone +ve herceptin -ve

I had a lumpectomy and sentinel node biopsy and am healing well. The nodes came back clear (yay what a relief) but the lumpectomy showed 2 additional smaller tumors that the original MRI didn't pick up. (I have dense breasts so Mammogram/ ultrasound didn't pick up anything). I've been having yearly MRI for 15 years.

I have a family history of breast cancer, my mum and 2 aunties and possibly my grandmother. All diagnosed below 50. I don't have a breast cancer gene.

I have to decide (quickly) either to go ahead with radiation or have a double masectomy to reduce my future risk. I had basically decided on masectomy but then the gene test came back clear and threw my decision making process into disarray.

Has anyone on here, at high risk decided to have a double masectomy (with implant reconstruction) even when they didn't need it to treat their cancer? I'm wondering how you made your final decision?

A few things holding me back from making the big decision, is the

-numbness across my chest after the masectomy (did ladies find this hard to get used too)?

- with the under muscle implants, did ladies find they caused any muscle weakness long term? 

I'm finding it a really hard decision. My mum fought hard to keep her breasts  (and so far is still clear 18 years later) and I'm leaning towards the full masectomy, as I'm a single mum with a 4yo and the weight of another cancer  weighs on me.

Sorry for the long ramble 😁

iserbrown

Welcome to the forum.   Decisions are personal and you have family history to consider

Here's a couple of links to help you

"BRECONDA | Breast Cancer Network Australia" https://www.bcna.org.au/resource/breconda

"Hormone therapy | Breast Cancer Network Australia" https://www.bcna.org.au/understanding-breast-cancer/treatment/hormone-therapy/

"Home - Reclaim Your Curves" https://www.reclaimyourcurves.org.au/home.html

Anita78

Thank you

Mazbeth

Hi @Anita78 I am sorry you find yourself here, but hopefully we can all give you some information about our experiences. As you know, this is such a personal decision and you, just like each of us has done, will need to consider all your options. It’s great you got in here. I am tagging @arpie as I know she will be able to guide you to some great links. 

I did the BMX - I was 53 on diagnosis and have a similar story - annual checks, dense breasts, area not picked up on mammogram etc. I had ILC so it is difficult to screen and that helped inform my decision. I knew I could not deal with the anxiety attached to future scans and my breast density in the remaining breast was not going away. I had clear nodes. I didn’t have radiation but I did have chemo and I now take an AI. 

I did the BMX June 2020 with expanders. Did the exchange to under muscle implants in December 2020, 3D nipple tattooing in June 2021 and just on Monday gone I had some scar revision and fat grafting around the implant. This last procedure was my choice as I felt the implant just needed a bit of ‘filling out’ around it - I am very happy. 

You are definitely doing the right thing in getting your research together. I would totally recommend a consultation with a plastic surgeon sooner rather than later to discuss reconstruction option and even perhaps the option of a lumpectomy and the ways they can ‘fill in’ the areas where the breast tissue is taken. I saw my PS early and he explained that a DIEP reconstruction was not an option for me etc and he also explained what he could do - all very helpful. This is where you can discuss nipple sparing etc and I agree that it is really important to understand the loss of sensation in the breasts especially if there is nipple removal. 

My breast area is numb with some sensation in spots, but overall, numb and I am very used to it. Under muscle implants give you what is known as ‘animation’ where when you contract your muscle, the breast moves as well - hard for me to describe, but it is a thing worth knowing. Some women don’t like this and opt for over muscle implants - another point to discuss with the PS. They do under muscle implants as there is less chance of ‘rippling’ of the skin or capsular contraction. 

I never was particularly strong in the upper body, but I not noticed any difference from my pre-surgery strength. 

I also had an excellent recovery from my surgery. My doctors were very supportive of my decision to have the BMX, but I also talked it through with a psychologist. 

This post is becoming very long, so I will stop, but I am happy to answer any questions. Gather your questions and ask as many as you need to help you make your decision. Take care 🌼

arpie

Hi @Anita78 - I am SO sorry to see you join the club that no-one wants to join .... but I am glad you've found us & hopefully we can help you thru this xx. (Thanks for tagging me @Mazbeth xx)

You have a very serious decision to make whether to go double mastectomy or not ..... and I don't envy you, tho when I was first diagnosed, I was prepared to go double if I had to.  I think your choice may eventually be more about what gives you greatest peace of mind - and not the 'what ifs' .....  maybe write down the Pros & Cons of both options .... 

Where abouts are you?  You can add your location (town/city) to your profile & members nearby can alert you to local services that may be available to you, & even meet up for a coffee & a chat when these Covid restrictions ease 

You may also like to join the Young Woman's group (see the Group ist on the right hand side) 

Like you, I had a Lumpectomy & then had radiation & was lucky no further bits were picked up .... I have dense breast tissue too & it is disappointing that MGs and USs are still not picking the BCs up.    Mine was picked up by my GP just months after a clear MG (being rural, the Mammogram buses are only 2D, not 3D, so don't pick up as much detail.) 

@iserbrown has given you some great links to check out above - and below (when you are up to it) are some more more light hearted stuff ..... as well as words of support xx Check out this post for a lot of general info on the forum - even having some laughs (which are often badly needed xx)   
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

Remember to take Deep breaths, take care & all the best in your decision making xxx

Halla

I was faced with the same decision and chose the lumpectomy only. My cancer was multifocal and included lcis, and there were more rumours found than was seen in the screening, which made me consider DMX. But at the end of the day I didn’t feel like having a huge operation right now if I didn’t have to, and the doctors said there was 80% chance I won’t ever get a recurrence. So I decided to keep an eye on things and deal with the 20% risk if it happens. I didn’t have any bc genes either.

Halla

Tumours not rumours !!

Julez1958

Hi it’s an intensely personal decision and not an easy one.
My situation was slightly different , I had a 5.5cm ( lobular hormone positive) tumour in left breast that didn’t show up on mammogram , I found the lump.
Because of the size I had to have a mastectomy.
I initially had the other breast reduced ( had been E cup) and a tissue expander placed in the left breast for delayed DIEP flap surgery.
A number of ( well meaning ) people said to me “ aren’t you going to get the other one removed too?.
I said “ why would I do that  it’s perfectly healthy”.
I had a good talk to my breast cancer surgeon who told me there was a 10 percent chance i would get cancer in the other breast and that some of his patients had a double mastectomy even though they had no genetic predisposition to breast cancer.
I talked to a number of people including my GP and other ladies who had “ done the double” and decided to go that route.
I didn’t want the anxiety of wondering if it would attack the other breast and next time I might need chemotherapy as well ( dodged it this time).
I had the surgery 7 weeks ago and have a feeling of huge relief.
The reclaim your curves website is vey good and they also have a Facebook group.
All the best with whatever you decide.

DuckieM

Hi @Anita78
I am sorry diagnosis. I am glad that you haven joined the online network for support. It is a great step to take and I commend you in doing it. I wish I did it when I was initially diagnosed but there were many emotions going through that time.

I am currently 31 years old. I was diagnosed with breast cancer when I was 29, 2 months before my 30th birthday. I am a dual-diagnosis patient because I also have Lupus. The lump on my left breast was only discovered after my friend accidentally struck me on my left side while we were messing around. There was a hint of pain after that and it didn't go away for a few days. Eventually after an ultrasound , a referral to my breast surgeon (I had a scare a few years before that but it turned out to be calcium depostis), another ultrasound and biopsy...it was confirmed that the lump was cancerous, "stage 3", and 5 cm in size. The surgeon recommended for mastectomy, axillary clearance and reconstruction and she was able to do all in one surgery. But I had to decide if it is going to be mono mastectomy or bi--lateral/double mastectomy and I had 2 only 2 days to decide. I decided to have a doubl mastectomy because I didn't want to risk the chance of cancer to develop/spread on my right side and for peace of mind.
I was diagnosed on April 8th 2019 and had the double-mastectomy and reconstruction (with silicone inplants in both sides) on the 11th; 6 week of recovery; 4 weeks of AC chemotherapy; 12 of taxel chemotherapy and 28 days of radiation, all to make sure that all the cancer had been removed from my body. The Chemotherapy and radiation treatment or completed at the Olivia Newton John Cancer Centre. I am currently 2 years and 5 months in remission. 
Your decision is a personal one and choose what is comfortable for you and with you because you know what you want for your body and it is what you will live with, with no regrets.

All the best with your journey. It may be very difficult at times but you will get through it.

Anita78

Thank you everyone, for sharing your stories, they have all helped as I work through my decision. I honestly didnt feel like talking to people this last few weeks as I grapple with this decision. 

I've seen the plastic surgeon and the radiologist (in the hope I would get there and go sure I'm doing this....which didn't happen)

Still leaning towards the BMX as I can't seem to shake a gut feeling that's what I should do. So going to chat to my breast surgeon again this week. Then decision time 😁