Hi all,
my mums story so far is that she has a palpable lump in the breast plus a (now palpable) swollen lymph node in the armpit that were both confimed as containing grade 3 IDC at initial diagnosis. we had her first oncology appointment yesterday.
The breast consultant didn’t tell us the size (or approximate) as said it’s irrelevant now it’s in lymph node. However yesterday the oncologist did a crude measurement - on top of the breast and said 5cm by 4cm. He reassured my mum that this was a crude measurement as including skin, fat, muscle etc. therefore I’m assuming there’s no way its going to be greater than 5cm on official MRI measurement next week. Has anyone had experience of two measurements before - the crude and the real one? He said they do it so that they can track it throughout chemo although she will get a MRI half way through.
My mums CT is being done 10 days before starting chemo. Is this the norm? Was concerned they may have extra concerns about speads so were pushing it through well before treatment. How do they give you the results? Appt, phone or nothing or dependant upon what they find? Really worried about this part. I’ve read lots of people have non cancerous things show up that are put on a wait and see approach. My mum used to smoke and has COPD so worried that the scan may be difficult to interpret and lead to more stress.
The chemo is to start in two weeks - FEC-T. At which point does hair loss occur? we know there are many other side effects but my mum is wondering how prepared to be.
My mum was told by breast consultant last week that she is weak ER+/PR-/HER-. I asked oncologist if this was considered triple neg and she said my mum is actually moderate ER+ as was scored 5/8. She will be getting treatment for this if all goes according to plan. Would this be tamoxifen and does is work work against moderate ER+ tumours? How long is it given for?
I know I keep using he/she interchangeably when referring to the oncologist - we had a male registrar and a female consultant present for some of it.
Thanks for reading our journey and adding anything you can. My mum hasn’t been on the site but I keep relaying information back to her and it’s a great help for us both.
Daisy
xx
Hi Daisy,
Again, I can’t answer all your questions, but I too had a lump which they measured as 5cm before MRI. After MRI, it was measured as1.5cm by 1.4cm, but when it was removed, it actually was 3.7cm!. All this had to do with the fact that My cancer was lobular, which is often bigger on removal due to the way it grows. What could be felt was the 1.5cm core of the cancer, and with all the muscle and fat on top of it, it made it look much larger. It will all depend how deep the lump is in your mums breast.
I didn’t have a CT scan, but my friend (who had node involvement) did and her CT scan was done just before chemo commenced.
I did undergo chemo and my hair started to fall out about 17 days after my first fec treatment. I decided against the cold cap, so perhaps your mum would like to try that, if hair loss is an added worry? I believe that it doesn’t always work,but the nurses in the chemo suite will be able to give her all the info on that. My advice for chemo is to drink plenty of water the day before and day of chemo as this helps flush the drugs through your system. I drank half a litre of water while being infused, and although I did have side effects, they were pretty minimal. But I must point out that I was on FEC75, which is a reduced version of FEC-T, so perhaps I’m not the best person to give advice on this one either!
I am now on tamoxifen and my marker results were ER+7, PR+8 and HER-. I would have thought that an ER+5 would have meant that your mum would benefit from taking tamoxifen. There was a comment on this site from a lady who was only ER+2 who decided against taking tamoxifen because her oncologist was unsure whether the side effects outweighed the benefits. Ask you oncologist, they should give you the facts and help your mum make an informed choice. I will be on tamoxifen for a minimum of 5 years, and this may be extended to 10 years, and I’m led to believe that that’s the norm.
I hope I have answered some of your questions and wish your mum all the best through her treatment.
Take care, Ann x x x
Whether you mum has Tamoxifen would depend on whether she is post menopausal or not. The treatment for we older, post menopausal women is an aromatase inhibitor, which prevents the body from producing Oestrogen. I take Anastrazole and there is also Letrozole. But whatever she is prescribed, it will be after chemo, and is usually taken for at least 5 years. Tamoxifen is sometimes given for 10 years.
Sending hugs and wishing your mum all the best.
poemsgalore xx