Breast cancer return after mastectomy

Hi 

Really sorry how awful for you did you take any hormonal inhibitors or chemo after masectomy?

Amanda

Hi VeniceLagoon - I have dense breast tissue also.  I was aware of it but didn’t quite realise the issue. Had cysts many times but on a routine mammogram I was recalled and this time diagnosed with IDC. The recall involved another mammogram and ultrasound for the one side only. Bilateral breast cancer is a bit rarer but I found a lump miraculously on my other breast myself a month after my RT.  Now I am having chemo and I’m constantly thinking that as my breast tissue was so dense the process should be to ultrasound both sides as a precaution surely? If that had happened I might not be in this situation. Then again I have to remind myself that I am lucky as I did find it and as a lymph node was already affected it is being dealt with.  

Not sure if you mean me, but no i had no treatments after mastectomy. Im Not even sure what I will get now! It’s all a bit messy and makes you even more anxious. X

Hi. I had a left breast mastectomy in October 2021. After a mastecomy you don't generally have radiotherapy. But chemo is a possibility. So the removed breast  tissue is sent for testing. It's called an oncutype test. This test scores ( 1 to 100)  the likelihood of reoccurrence of cancer. If the score is below 15 (which mine was) chemo is not required. However, I do have to take hormone therapy drugs. What you take is dependant on where you are in the menopause. Pre menopause it's usually tamoxifen. Post menopause (like me - I'm 53) it's letrozole. I also have to take calcium (ad-cal) tablets as the hormone therapy drugs can affect your bones. I've been told i'll have annual MRIs on my breasts and bone scans.

Hi , I’m one of the few bi lateral bc ladies . Yes , all a bit daunting when it’s both . 
One side was found through mammogram the other by ultrasound .

Just goes to show the importance of having both types of examination ,

xxx

Hi Jane, not sure if this is going to everyone who messaged.  Hope not as I just wanted to reply to you.  I can't believe they are not going to offer you any treatment. You say your lump is small so why dont the remove it and gve you follow up treatment? 

 I am stage 4 triple negative.  A PET can showed that the cancer was contained within the mass and had not spread. I had 3 cyles of chemo (Abraxane)  and immunotherapy (Tecentriq). This was on a 4 week cycle, both treatments weeks one and three and just chemo on week two.  Then had a week off. I had a scan after these treatments and mass was trill growing.  Have now gone onto Xeloda).   These are tablets.  I refer to my cancer as a mass because it its huge.  Goes from inside my lung and protrudes to a large lump outside of my collarbone. 

My consultant is also a condecending *****.  He doesnt really tell me amything.  I have had to stand up for myself in all this and chase for information.  Even the breast care nurses are hopeless.

I have now asked for a second opinion as I only have a limited time to get this mass reduced.  This has been going on since May and I have had a noticable deterioration in my health . There is no chance of it being cured but I want to get it to reduce so that I can get back to some sort of normal life in the time I have left - go travelling/playing golf/long walks etc.

Not sure if I am giving you the right advice but I would ask your consultant tomorrow why you are not being given treatment and if you are not happy with his reply then push him.  This is a very hard emotional time for you and if you dont feel you are strong enough to take this approach with him then take someone who is not so emotionaly invested in this and who can fight your corner.  Stand up for yourself and be forceful.  This is your life they are playing with.

Luckily my husband is a nurse so knows what to ask.  He has been my rock.  It should't have to be like this though.

If this is a private reply then I would very much like to give you my phone number and we can chat if you would like.

Good luck tomorrow - let me know what happens

Lesley

x

hi Lesley when you reply to a thread we can all see the response but I'm glad I can see your response, I was wondering how you were getting on.

May I ask which hospital you're being treated (not treated) at ?  If you're London based you do have options, or if you're prepared to travel.

I can see you mention two treatments which are the most advanced treatments available, Tecentriq was only approved recently. It won't have long term results and the consultants will still be using it on a trial basis. 

However that doesn't mean that older treatments won't work but you're right in saying you haven't got endless amounts of time to trial drugs to see which ones work.

Sadly after we'd campaigned for Kadcyla to be made available some of the ladies who then became eligible found it just didn't work on their particular cancers. 

The admins won't like you sharing phone numbers on an open forum but you can make friends and use the direct messaging function.  I have used this on a few occasions when I wanted a little more privacy.  I'll send you a friend request in a min so you can see where it lands.

 you can use the @ symbol to tag people to alert them

hugs

Carolyn

xxx

if you click on the name of the person you will go to their profile and from there, in the top right corner, there is a 'connect' button.

Hey Lesley, maybe I misled you but they removed the lump! It’s cos it is small onco says chemo would be too much, despite this being my third recurrence in a year even though other two were dcis but now it has changed to grade 3 triple negative. There was talk of radiotherapy but I will find out tomorrow. I think the fact I taped the meeting and it does not make for good listening for them they are now backtracking to do the right thing! It’s such a scarey road and the thought of being left to self manage this again is honestly terrifying. I would like some sort of life back!  Thankyou for reaching out to me x