Risk reducing mastectomy

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Hi everyone

I don’t post that much on this area of the site as my husband was diagnosed with throat cancer at the same time as my breast cancer so I seem to spend all my time over in the head & neck cancer area. Bad luck eh?

However....I’d really like it if we could have a discussion about risk reducing mastectomies.

Last year I was diagnosed with invasive lobular cancer and had a mastectomy of my left breast. The margins were not clear enough so I the. Had further surgery, an uplift to my “good boob” and 15 rounds of radiotherapy.

I have a real fear of MRIs and as my cancer is lobular it means mammograms don’t always detect the cancer. From what I understand lobular grows in a line as opposed to forming a lump so it makes it more difficult to detect. My first MRI found 2 other tumours in the same breast that my mammogram didn’t pick up.

For this reason I am considering a risk reducing mastectomy on my right breast. I actually asked for a double mastectomy at the time but they refused. However my case hands now been discussed at MDT and all stakeholders were in agreement that I can have another mastectomy for 2 reasons:

1) my fear of MRIs

2) the fact it is lobular cancer which can go undetected

I have an appointment with the plastic surgeon on 27 September to discuss this.

Id be interested in your opinions on this please.

Love Sharon xxx

latchbrook over 4 years ago

Drivermason

Hi Sharon

I can't contribute to your discussion, not having been in this position, but I noticed that your post hadn't had any response yet. This is probably because the group is very 'busy' and your post has slipped down the discussions list before it's been seen. By replying to you it will 'bump' it back to the top where hopefully it'll be more easily spotted.

Wishing you all the best with whatever you decide to do

"Never regret a day in your life, good days give you happiness, bad days give you experience"

FormerMember over 4 years ago

Hi, I feel the same way. I didn't ask for a double mastectomy at the time, and had a single one. I wish so much that I had had both removed. My cancer also wasn't detected by mammogram either... so I feel anxious about it! They agreed a risk reducing mastectomy on the other side just before lock down, but then because of covid I was told it would be ages, and I've heard nothing since. I realise that I'm low priority but I would so love to have it gone!!! I would definitely go for it if I had the chance. Good luck deciding!!!

Drivermason over 4 years ago in reply to FormerMember

Thank you

I have decided to go ahead and have the risk reducing mastectomy.

I spoke to the breast nurse this week and got my mammogram results which were clear. However this does not give me the assurance I need regarding the fact I had lobular cancer.

I am seeing the plastic surgeon on 27/09 and understand the op will be in the new year as it’s not urgent and the surgeons are struggling to get theatre slots.

i hope you hear soon too about when you can have the 2nd procedure.

Sending love Sharon

Sharon xx

Hubby - Left tonsil squamous cell carcinoma P16 positive with neck nodes T1N1M0 - 30 fractions of radiotherapy and 6 weeks of chemotherapy, Cisplatin in December / January 2019/20

Me - Invasive lobular breast cancer - Grade 2, Stage 2 - mastectomy October 2019 - 15 fractions of radiotherapy December / January 2019/20

FormerMember over 4 years ago

I was diagnosed with a ER+ HER- tumour in January following a routine mammogram, with lymph node involvement. I had a right-sided mastectomy and lymph node clearance, followed by chemotherapy, and am about to start Tamoxifen. I am 46.

Due to my family history (mum: breast cancer at 58, lumpectomy snd radiotherapy; sister: ovarian cancer at 33, hysterectomy and chemo, followed by secondary tumours, further surgeries and chemos, died at 40), I was referred to a geneticist for gene testing, but my surgeon did say he would be willing to do another mastectomy regardless of the results if I wanted.

My tests revealed that I carry the ATM gene. Although this carries a ‘moderate’ risk rather than ‘high’ risk like the BRCA gene, with my family history I just don’t feel I can leave it to chance - as well as my mum and my sister, my dad and various aunts/uncles/cousins have also had cancers.

I have an appointment on Wed with my breast surgeon, when I plan to discuss my decision to have a further mastectomy, and hopefully reconstruct both breasts at the same time. I’ve also been referred to a gynaecologist to discuss having my ovaries removed to reduce my risk of ovarian cancer.

It’s a personal decision, and there’s no right or wrong answer for everyone, but i feel it’s the right one for me x

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