Breast cancer return after mastectomy

Mike , like -Ana- says you need to ask for a face to face and have your wound checked over . 
What’s your medication plan ?

Also oncologist ?

We are all in this together regardless of gender . Please stay in touch on this forum .

Peneolope 

That’s awful I’m sorry to hear this. What cancer did you have in your breast? I’m having an mastectomy too and like you I’m worried about reoccurrence as how would I know? The nurse said you’ll notice any difference but the thing is with my current cancer there were no lumps etc it’s so scary 

• Following my mastecomy a sample of my breast tissue was sent for an oncutype test  - the test gives a score. A low score (15 or below) indicates a low risk of breast cancer returning. A higher score means a higher risk. The score then determines follow up treatment. 

hi

I couldn't agree more.

Everyone jumps up and down with some urgency to resolve primary breast cancer but then nothing. 

I actually had to correct a radiologist last year as he was saying we don't normally do ultrasound on reconstructions, I said it was recommended for me to have both mammogram and ultrasound on my 'dense' right breast but also ultrasound on my reconstructed left breast to check for recurrence. 

Initially I had insisted on a follow up CAP (chest, abdomen, pelvis) and bone scan for the first three years as I had a terrible record with imaging,  routine mammogram missed a lesion in 2012 and MRI misreported suspicious lesion in 2015. 

But it was the MRI that showed the suspicious lesion that then popped up into a marble sized tumour in my chest, so why no follow up MRI?????????

Someone told me there is a national shortage of radiologists but I've never seen a government campaign to train and recruit?

Scandalous 

AND my GP was fairly blunt in his now incredibly outdated attitude of , the outcomes are the same.  In other words it doesn't really matter if you're diagnosed with secondaries early or late, you've still got 2 to 5 years on average. 

Yes we accept that secondary breast cancer is incurable, we get that, but early detection, better treatment and better understanding of the quality of life that can be had under treatment, is what's desperately needed. 

I know GPs are worried we'll all be turning up fortnightly with a slight headache thinking it's a brain met, or a slight cough and it's a lung met but frankly that level of care needs to be there for us. 

https://breastcancernow.org/get-involved/campaign-us/secondary

also, anyone responding with good advice for others in the thread, don't forget you can use the @ to tag people to let them know.

lots of love and hugs

Carolyn

xxx

I had post opp check but since then nothing. I'm ok with it all as flew through radiation therapy no problems just big tan the size of the gel pad they put on you. Left side feels tight  but putting plenty of E45 on. My best advice is stay positive push yourself to getting back to as much work as before. Everyone is different as I noticed in hospital waiting for radiation,, I'm not scared of showing anyone my wound ,I try to talk to people in my industry men and women to bring it to the face of people check and chat. 

To all of you that find it hard give a loved one a cuddle  it helps

It's very worrying what the Lead Radiologists can say to us. I was asking the one who phoned me up (after changing the appt at least four times) about the future mammograms and whether I could have an MRI in future. She said no, because it woul be too much radiation. There is no radiation when you have an MRI. Why they can't be straight with us I don't know.

It’s because MRI is very expensive and requires large amounts of helium, which is a scarce resource. They shouldn’t lie and I think yiu should complain about that

I have only come across this as I was searching out anyone who had a recurrence after mastectomy. I had my mastectomy in august 2021 5 months after having lumpectomy and radiotherapy. It came back! Again 3 weeks ago I found a lump on my mastectomy scar and it’s been confirmed as grade 3 triple negative a step up from dcis. Last week I had to see oncologist and on arrival he had no idea that I had had the 3rd recurrence! He thought I was there for checkup on mastectomy! It was so upsetting. I had been told I would get chemo by my surgeon and the MDT  but this guy said no it was too small of a lump. He wasn’t even at the MDT.I was basically told it was self management and I had to regularly check myself which I have done. Anyhow to cut a long story short he realised what a shit show the meeting was and I recorded it so I had a ct scan this week and I go back to see him on Monday night which I am dreading as I just feel I don’t connect with him and he is very condescending. I feel everything you say is so true! We shouldn’t be left for longer than 6 months between checkups. I was told it’s because they want us to get our lives back, but unfortunately your life changes for ever after a cancer diagnosis. Thankyou for raising this x

Hi had single MX July 2019 and diagnosed HER positive therefore know at risk of return hence still on treatment . Have asked oncologist why no scan on that side response was just don’t do it . She did offer to do full finger tip check which I agreed was better than nothing ! 
Have not seen surgeon since morning of op . His assistant did follow up two weeks after . Since then under care of onco .

I have just returned a survey about my cancer care and have noted lack of scan on op site a concern for myself and others . Think all we can do is keep backing on about it . 

Hi Whitestar

Sorry to hear that your breast cancer has returned and that is is triple negative.  Sorry also,to,hear that your oncologist wasn’t up to scratch 

Best f luck with your meeting on Monday.

Best wishes

Daisy53