Two years since Chemo what now

Hi there, I’m just replying to let you know I had pain in my collarbone and up my neck which turned out to be a small blood clot in my armpit. I didn’t have any swelling or redness which is a sign of a clot because it was so small. Tamoxifen can increase your risk of clots so that’s a possibility. They found mine with an ultrasound scan.

I know my hospital have what they call “patient led referrals” which is basically contact the breast care nurses if you have any concerns in future. I know they told me that around my time of diagnosis but it had completely gone in one ear and out the other at the time. Give them a ring, I’m sure they’ll be able to advise you.

Oh and the clot wasn’t one they were particularly worried about, I had to have clexane daily for three months but once they knew I was on that any concern the doctors had seemed to disappear.

Hi maxinem2 you’re just a few months ahead of me! I see my oncologist every 6 months but that’s in the private system. Are you anywhere near menopause? I will change from tamoxifen to an aromatase inhibitor soon, as I’ve now gone through menopause - was that discussed for you?  You should have a written care plan at any rate explaining ongoing treatment and follow up points - this is in the NICE guidance.  If not perhaps ask GP to request it for you.

Hi maxinem2,

I also had dx in Nov 2016. I last saw my onc (well, actually one of his minions) in April this year and she told me she had no idea why this appointment had been made and that I should have been discharged the previous year. So she then discharged me. I also haven't seen my onc himself sine mid 2017. 

Cwtches,

Gay xxx

Hello maxinem2 i haven't completely finished with all this poopy yet but i was told by my breast care nurse that they are available to me for 5 years from getting the all clear. So if i was you i would contact them and speak to them. They will be able to answer any questions you have and tell you if you should have seen your oncologist again or not.

Hi all, many thanks for your responses. Very often the answer is ‘contact the Breast care nurse’ and this is probably where the problem lies. I don’t like, or trust mine. I’ll have to call though. I never seem to get sorted until she is off and someone else is filling in!

as for menopause... who knows.  My last period was the same day as my first Chemo and it only lasted the one day and haven’t had one since. 

Cheers everyone x

Hi Maxine, 

practice seems to differ widely across the country re follow-up appts. I got seen at the long-term patient clinic in Dec, one year on from diagnosis, about 6 months after end of treatment. Will be seen there every Dec for next 4 years now. That’s run by a nurse practitioner. I saw oncologist in Sept for what I thought was a sign-off about 6 weeks after RT finished. However, I got a ‘surprise’ appt through for oncologist last week, which is around a year on from my surgery (I had chemo before surgery). They said it was just a check up. Mainly discussing how I was doing on the tamoxifen and that they might swap me to letrozole in Dec as I’ll be deemed post menopausal by then. 

L xx