Recurrence .....looking for reassurance

bev mine was the other way round i had the hormone pos one first then the hormone neg one…

i didnt have chemo for hormone pos one as was fairly small 1.3cm, grade 1 and no nodes so just went on tamoxifen as was pre menopausal.

this time its slightly bigger 1.9cm, grade 3, lymphatic invasion, TN and no nodes.

you sound pretty similar to me just the other way round although i was a wee bit younger with 1st one at 37 and again at 40.

getting a new primary just means your super dooper unlucky like me but having chemo or not for the first one is unrelated to getting the second cancer as they are both just random along the lines of getting colon cancer then skin cancer… just that they both happen to be in your boobs.

i was told i wouldnt get taxotere even though i requested it (probably financial) which would give another 2% better chance of surviving 10 years… but on epi-cmf which still improves out look by 7% compared with no chemo… takes my chance of living for 10 years up to 88%… (90% would have been better LOL, but im not gonna quibble over 2%) my unit wont give chemo or a different generation of chemo for a 2% benefit or less… i presume this tumour is also a grade 3? as the usefulness of chemo for a grade 1 or 2 is negligible… less than 2% even with taxotere which is very strong chemo.

this is based on adjuvant assessment tool… but it is only a tool and isnt definitive… but it can help in the decision making process.

this is the link for the adjuvant tool which says its for professionals only although anybody can register but some people dont want to know what the risks are so have a good think about that before you login… although iv had a quick look from the info you have given and i seems a better outlook from this BC than your first one.
adjuvantonline.com/index.jsp

feel free to pm me if you wanna chat some more… a week doesnt seem a very long time to weigh it all up really does it.

Thank you Lolly and Lulu for your replies. Yes Lulu you and I sound very similar!
I have since spoken to my Onc Nurse Clinician, Gill, who has over 30 years experience and who i have been in touch with regularly over the last 5 yrs. You seem to be spot on Lulu with the info (and Gill has now explained it much better actually than the Consultant!)
She said I had chemo last time as it was grade 3 Triple neg and large (3cm). This info alone put my percentage as 70%. But added to that all nodes were clear which added a further 12% making it 82%.
This time, using the aqdjuvant tool, she says my prognosis is better as this one, although still grade 3 is less than 2cm (1.4cm)and so considered low risk, Er+ and therefore less aggressive. Again no node involvement so she says this equates to 90% this time. Undergoing chemo with Taxotere would increase this by 2% giving me 92%. But when she then listed all of the possible side effects from it, I think my decision was made!
On FEC last time I became neutropenic halfway through and she said with Taxotere this is a common side effect. Also my veins were rubish last time and I had to have a pic line so the same would happen again moreso with Taxotere. Also you have to take huge dose of steroids with it, which I didnt tolerate very well last time.
So all in all I think I agree with you, the Arimidex would benefit me a lot more this time round.
You’ve cheered me up no end by saying that I’ve probably got a better outlook this time! Think I will just have a quick look at the tool for myself although Gill has warned me to steer clear of the internet - she knows what I’m like!!
Bev x

hi bev
I was reading your posts and wondering how things are going with you. Your situaion sounds silmilar to mine - I also have a daughter who is at A level stage.
I have triple negatvie BC which was treated in 2006 - I responded very well - went back to work and loved it.
But out of the blue in October it has recurred in the same area. I had a mast two weeks ago - I found it very early - it was only 8mm and there was no vascular or node involevment. I have to say I am still thinking could I have had another lumpectomy. I am still coming to terms with the mast - I had a LD flap -it is incredibly uncomforable adn I have an infection of the irridated skin which is monitored very carefully. You are a few weeks on - wehn does it start to improve? At the moment it really hurts wehn I walk.

I will be meeting teh onc in a couple of weeks btu I do nto think I could cope with any more treatment. Like you my viens are shot to pieces. I would need to be very convinced that more chemo would be worthwhile.
Any words of advice would be very much appreciated.
lel

Hi Lel
Sorry I havent replied sooner, havent logged on for a while. Sorry to hear you’re having a bad time of it. I didnt have a recon, just have a prosthesis, my surgeon has offered to do one later on but dont think I could face more surgery! I’m healing nicely now and started back to work last week. Had a few hiccups along the way, first a seroma at the end of my mastectomy scar which had to be drained weekly, then I had an infection there which needed 2 courses of antibiotics but I think the worst was the soreness and tightness on my chest! I was told this was due to very tight connective tissue and was referred for physio. This has benefitted me immensely, and am still having it fortnightly. Its definitely loosened up the skin and as I also had cording down my arm, the physio worked on that too which has been a tremendous relief. The pain and soreness does ease off eventually but try and keep doing your exercises - I know this is painful in the beginning but it really will help if you perservere. Also I rub a light moisturising cream into the chest area and into my arm at night.
Youre lucky the lump was very small, mine was 14mm, classed as small too but unfortunately they don’t do lumpectomies for a second one in the same place. I didnt have chemo, the Onc advised against it this time as it would have had little benefit but am taking Tamoxifen this time as this lump was ER+. (a new primary)
Is yours still negative or a new primary?
Like you I couldnt believe it when I learnt I had another one, I had settled back nicely into work too.
Still onwards and upwards and lets keep positive about the future eh?
Love Bev xx