Just had mastectomy, round 1 to me!

Hello Ladies,
I’ve posted a couple of times regarding waiting times and surgery options and thought I’d now bring things up to date. I hope this is useful to anyone experiencing similar.

A recap; I’m 64, first diagnosed early December via suspicious mammogram and ultrasound, biopsies taken then, results two weeks later confirmed Lobular invasive, grade 2, ER+ve, right breast. Options for lumpectomy or mastectomy with any other treatment to be decided after surgery, though Letrozole a definite for the ER+ve aspect. MRI scan late December and another two weeks for results showed two tumours (16mm and 13mm) and suspicious areas. Mastectomy now the only option.

Had that on Monday, single mastectomy (gone flat) and sentinel lymph node removal (they call it a biopsy but it’s actually removed) . I go back in two weeks for the lymph node results and treatment decisions.

So, 8 weeks in all from first detection of cancer to mastectomy. And yes, the waiting time between appointments , test and results and decisions is without doubt unbelievably and extremely hard. It drags and feels like forever, but we get through it. Hang on in there if you’re at that stage.

I’ve now two weeks to wait - again ! - for the results of the surgery and lymph node tests. This is for me one of the hardest parts. It’s the “has it spread” question I fear, more than the breast cancer. BUT I do feel buoyed by the fact that the root cause and tumours have now gone ! Hooray !! I know that may sound very weird, celebrating the removal of a breast but I’ve got rid of an active cancer and that’s worth a cheer to my mind. The first round of this war is won. I won’t know how many more fights I have to have until the lymph node results come in, but it does, as others have said, feel positive to be now having treatment.

For anyone undergoing a mastectomy, my experience has been good. I’m in no pain and am doing my shoulder exercises. I’ve some bruising coming out now and some fluid building up which the nurses explained to me and so isn’t a worry. It will take a few weeks to clear but I know what’s happening and so am OK with it. My breast care nurses, and surgeon have been excellent – talk to them about any concerns or questions you have, in my experience they are very patient, very understanding, very helpful, honest, and down to earth. I couldn’t ask for more.

Once I get my lymph node results, I’ll know if it’s chemo and/or radiotherapy as well as the Letrozole. I’ll let you know, and will no doubt look for advice from others on this fabulously supportive forum – in the meantime thanks again for the advice and positive responses to my other posts and I do hope my story helps you if you’re in similar circumstances.

Keep going, Life is worth taking every hard step on this awful path, lots of hugs and best wishes to all who are on it.

And a quick call to Sammie, not spotted any more of your updates, I hope all is going very well for you.

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Congrats! I also felt absolutely thrilled when I woke up from surgery and realized the hated cancer causing breasts were gone. Didn’t know I’d feel that way but I practically floated for a good 72 hours :slight_smile:

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Hello Bee2.
It is a relief when plan starts. You seem to be recovering well, already doing exercises.
I wish you all the best and patience waiting for results day.

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Hi Bee

Totally with you! I was never afraid of my mastectomy and what it would do to me - it saved my life.

Boob off + (infected - it was a lymph node lump that sent me to my GP) nodes out = cancer gone.

Chemo and rads as the cherry on the icing on the top of the cake to make sure.

I was diagnosed on 2 December 2020 (that 1st Covid winter) and had my op on 8 January 2021. My longest wait was just short of 3 weeks for the appointment when my GP referred me.

My 2nd appointment after the MDT meeting to plan my treatment was a while but my surgeon pencilled in my op date to secure my place so I started my treatment within the 60 day from referral (or whatever it was) guidelines.

I hope you recovery quickly from your op - your positive attitude will help. Don’t overdo it! Here’s to nothing in your lymph nodes and a simpler outcome for you.

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I think that’s probably the anaesthetic. :blush:

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You’d think but I was genuinely thrilled. I hated those breasts by the time surgery came around;. How dare they try to kill me.

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Morning all,

Hope everyone is doing OK today.

I’m two weeks post mastectomy op and recovery seems to be going well. I’m sore and odd little stabbing darting pains occasionally in the op area but nothing scary. Bits still numb too around the scar and under the arm but again to be expected and not to worry about (according to my BCN, who is a great support). I hope everyone else recovering from surgery is getting on fine ?

My big boost has come from my test results, all’s confirmed as per the initial diagnosis; lobular, grade two, two tumours (turned out to be 20mm and 18 mm in the end) … but the sentinel lymph node removal and test has shown no spread to lymph so am very relieved that I’ll not need chemo or radiotherapy treatment for any suspected spread.

I haven’t managed to get off treatment altogether though. I now have to take Letrozole for 5 years. I have a bone scan in a few weeks time to assess my bone density and whether or not I’ll need calcium and/or bisphosphonates too.

I’m not at all looking forward to the Letrozole given the potential side effects but I do feel that in the grand scheme of things it could have turned pout a lot worse.

I’m trusting that there’s a real benefit to taking Letrozole, the NHS predict model only adds 1% benefit to taking them but my surgeon was quite adamant that they are necessary and that it will give me recurrence protection. My NPI score is 3.4 so I only just scrape in as “good” for prognostic purposes and I wonder if that adds to the need for Letrozole too.

So, here goes … first tablet today !

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Hello Bee2

Well done to you for getting this far after your surgery, please look after yourself take all the help offered as it is still very early days lots of TLC.

As regards medication, I’m not sure how old you are, but I feel if you could possibly take it please do. I must agree with your oncologist but it would be good for you.

Wishing you health and happiness going forward for an excellent outcome and remember that cup of tea with a special friend to upload any problems is always a good way forward in my book.

Biggest hugs my brave lady Tili :pray::rainbow::pray::rainbow:

Hi Bee2. Thank for your post. Hope you are continuing to do well. I have similar diagnosis to you and have appointment Monday to discuss plan with the surgeons. Your explanation of your experience has reassured me a lot. x