Breast cancer - Post treatment follow up worries

Hi Frankie123 , your case sounds similar to mine although my invasive beast was a bit bigger (13mm) but no DCIS. So I had a lumpectomy/ wide local incision rather than a mastectomy. If you click on my username you can see the details. I agree about the abandonment feeling, suddenly it feels like you’ve been cast adrift. And yes definitely that nagging worry about whether it’s all definitely gone. But I think we just somehow have to accept that, at least for now, there’s no evidence of disease. But it’s really hard to trust that all is ok. 
Re follow up, it may differ from area to area. I’m in Hertfordshire and had an oncology follow up 10 weeks after my 3 weeks of rads finished. At that appointment I had an examination and discussed any concerns - this resulted in a referral back to the breast clinic and a lympheodema referral. I never thought to ask re oncotype testing, I wasn’t offered that either. Otherwise my follow ups sound similar to yours - yearly mammograms and then an appointment with the breast surgeon. I’ve past the 5 year mark last November but am having a final mammogram this summer - it’s out of sync because I self referred to the breast clinic one summer and had a mammogram ahead of schedule so it became a summer event instead of autumn. Please do contact the breast clinic if you have worries, that’s what they’re there for! I was told I could self refer during the 5 years post diagnosis and have done so a few times. I always feel like I’m making a fuss but they’ve never made me feel that way. We’re just not used to asking for stuff I think! And don’t want to ‘bother’ them. But it’s important that you do if you have concerns. 
Sorry such a long ramble! I blame the Anastrozole; I feel I’ve lost the ability to be concise! Love and hugs, HFxx

Hi Happy Feet1

Thanks so much for your reply. I think I was having a bit of a wobble yesterday and feeling a bit vulnerable. I'm planning to phone my breast care nurse next week just to go over the follow up details and probably for a bit of reassurance. It's been such rollercoaster, as I know it is for everyone, and now I've ended the active treatment it's almost like I don't know what to do with myself. Lots of rest and self care planned over the next few weeks though.

I know I have the radiotherapy follow up in a month where I can talk about concerns too so that's helpful and my mammogram next year. That feeling of uncertainty probably won't ever completely leave but I'm hoping it fades a bit over time. Like you say, acceptance is key.

I really appreciate you taking the time to reply - plus you weren't rambling, it was just what I needed to hear!

love and hugs to you too x

Hi Frankie123 , meant also to mention this article which I’ve found really useful over the years… I’ll try to post the link …. ok don’t think that’s a function here anymore, or I can’t figure it out. If you Google After the treatment finishes by Peter Harvey it should come up. Xxx

Here’s the link that HappyFeet1 was hunting for, well worth a read (more than once!) 

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Hugs xxx

Thanks moomy ! I can find the article but can’t post the link - how did you do it? Have been able to post links in the past but have failed twice now! Very much worth repeated reads over the years xxx

Hi HappyFeet1,

Thanks, that's great - I'll have a search for it.

Frankie123 xx

Hi Moomy

Thanks so much for finding the link and posting, I'm I'll definitely read it more than once!

Frankie123 xx 

Ha! I just ask my phone to copy link, HappyFeet1 and then go into where you want to post it, then press till you see ‘paste’, it’s the old copy and paste trick. (To be honest, if an old fogey like me can do it….!) 

hugs xxx

That’s exactly what I did moomy ! But nothing happened! I tried on another thread too. Who knows why?? Anyhoo thanks for managing it. Xx