What follow-ups...

I’m sure that this will have been discussed before, but I wondered what follow-ups people have received “After Treatment has finished”? I’m triple negative, so no hormone therapy… I’ve had all the treatment on offer.

Now 20 months post-treatment, I’m on 18-month mammograms, annual visits to the oncologist (and I think that’s only because I was on a clinical trial) and I think annual check-ups with the surgeon, but not sure for how long…

I was watching the Gail Porter programme last week and the specialist there (not sure if he was a surgeon or oncologist) mentioned how an MRI scan was a more effective way of picking up abnormalities - I think he said that whereas it could take 5 years for a tumour to grow to a size that you could feel it, it can be detected on a MRI three years earlier… Has anyone had an MRI done privately, just for peace of mind?

Ali x

Hi Ali,

I’m considering MRI myself. I’ll be interested to hear anybody’s information on this too. I was going to mention it to my surgeon or Oncologist. If they said it would be benificial then I would definately pay for one myself. I think Medical opinions vary greatly on this.

Fiona x

Hi Ali,
I was dx Feb 08 so a similar time to you. I was on the TACT2, well I am still on it as they track you for life. I am surprised you are on annuals already. I am seen every 12 weeks still, alternating between the surgeon and the onc and then annual mammos on top of that even if they are at a similar time to an appointment. I have a full set of blood tests and tumour markers done on every visit to the onc. I had a grade 2 with no nodes, ER+, PR+ and currently on tamoxifen after chemo and rads. I have not had an mri scan but ladies in my area have one if any bad aches or concerns to investigate them. I had a Ct scan and bone scan as routine at dx. So sorry not sure about the mri but if they had not given me annual mammos I was going privately.
Good luck and hope someone else comes on to answer your second part
Lily x

Hi Lily,

I was also on the TACT2 trial… but I was diagnosed late April '07, surgery May '07, then chemo and rads, finishing in late Jan '08… so a year or so ahead of you. Evidently my surgeon, who was top of the field and very experienced, feels that 18 months is often enough for mammograms. I had the initial one in April '07, then one in May '08 and one is due at my next check-up on 10th Nov (aagghh)…last time I had to wait for 3.5 weeks for the results and that was only because I had a routine onc appt and asked!

I’ve never been told about tumour markers, but had heard of them, wondering what they are. What info do they actually give you from that? I just have a constant worry of recurrence, even though there was no spread… Grade 3, but no node involvement, whew! I’m triple negative, so no other ongoing treatment, which does leave you feeling there’s no safety net - though I am happy not to have the unpleasant side-effects that Tamoxifen can evidently bring!

I never had a CT or bone scan at diagnosis or during treatment, however, did have a bone scan a couple of months ago, because of a niggling lower back / leg problem - all clear :slight_smile: But still I worry.

I’d happily pay for an MRI, if it gave me some peace of mind!!
Treatment plans vary so much, dependent on where you live, eh?! Hey, I should be happy that I’ve come out of the tunnel in one piece and am evidently healthy again - I hope! I’m a lot better of than a lot of people.

Ali x

hello Ali & Fiona

I have had my treatment dx Oct 08 WLE, lymph node clearance all nodes effected, chemo 8 sessions AC/ Tax every fortnight, 31 rads , privately through health insurance i am 3xneg so no hormone treatment. I was told by my surgoen i would have an MRI and Mammogrm and ultra sound as my end of treatment check on the anniversary of my surgery. But then i developed a swelling in my breast bone area in Sept and i had an mri immediately to check the area ( it was clear)I have now been told i won’t get my post treatment breast checks until jan as they want things to settle down! when i saw my onc in Aug he said he didn’t like to use mri for general checks as they show up too much !!! I also read recently that its rare for BC to re occur in the breast area, so using mri for that area is not helpful, so i am now pretty confused. Also the cost of an MRI privately is about £600…but you get to keep the CD…yes they gave me a CD of the imaging , waht use is that to me ?? Not sure if any of this helps you or answers your question.
Rhian xx

Hi Ali,
it is all very confusing why all these docs give different advice - which arm did you get? I was on arm one so 28 weeks chemo. I guess the mammos depend on age too as I can soon have them anyway as approaching 50.Lots of luck when you go for the big squeeze - hate it! I had a long wait too as doc had gone on holiday, who always checks them, radiographer I guess.Tumour markers are written on the blood form as Ca 15 -3 and are not reliable at lower levels, in fact people who have never had cancer can still have the. They do indicate recurrences better though and can zoom up into big numbers indicating something going on or starting up. Another one that some oncs love and others ignore, again an expensive test so money is often the real reason but perhaps that is just being cynical.I wrote it on my blood form every time if they didn’t as I became fascinated (or ocd?) by them and just needed to know they were going the right way each time I had chemo.Other people never know and don’t worry.
Tamoxifen is yuk but you are right in that you do feel there is still a little arm of care carrying on so I am grateful to take it.
Let me know what they say if you ask about tumour markers, might be worth knowing your ok/ base level and good luck most of all
Lily x

Hi again Lily,

I was on arm 3 of the TACT2 trial (I think I’ve remembered correctly - it seems a long time ago!)… it was 4 cycles of Epirubicin and 4 cycles of Capcetibine, also over 28 weeks, but I had one delay of a week, so 29 in all. Boy, my veins don’t cooperate any more, if I do have to have anything done!! I’ve recently started taking two herbal tinctures (Bilberry and also Horse Chestnut, which someone said can help your veins - can’t do any harm, as no nasty stuff, and time will tell!!)

I’ll ask about the tumour markers, although I suspect it’s the oncologists field and I don’t see them again until early June - onto annual with them. I also suspect that as they’ve never been mentioned so far, then my oncolgist is possibly not a follower of them, or has a tight budget!!

Re the mammos… I’m 46, so a few years still off the routine NHS checks.

All the best… must go to bed, as this is a silly time to be up… work tomorrow…sigh!

Ali x

I was diagnosed Oct 2006, WLE, ANC, Her2+. Had 4xFec/25xRads/4xTaxotere/13xHerceptin.

I now get a yearly mammo and a follow up about 3 weeks later with a review clinic attached to the main breast clinics. It runs at different times to the main clinics so isn’t busy. My next mammo is Friday this week. If anything suspicious was to show up on the mammo I have been told by my BC nurse I would be seen at one of the main clinics within a week. When I get to the end of remission I’m 50, so have been told I will automatically pass into the screening programme.

When I was discharged in August 2008 the oncologists said this was all I would need - as there was no hormone involvement there was nothing else they could do for me. I don’t miss the 12 weekly appointments, by the end I thought my life was being ruled by them.

Hi all,
Ali my veins were rubbish from the start and as epi narrows them I got sent for a port before I started chemo. So veins not a problem just got 2 extra scars instead as payback :frowning: The herbal things sound interesting, hope they are not too nasty to take though. Sorry you have not heard more about scans from your post.
Hi Cherub wishing you good luck at your next appointment
Lily x

I’m 2 1/2 years on from chemo, 1 1/2 on from the end of Herceptin. I had the veins from hell when I started this and now having to give a blood sample for testing is a nightmare. I had a gynae appointment recently and they needed to check my post menopausal status again. It finished up with the Registrar taking the sample as the nurses had a try and decided they didn’t want to go there!

There is another tumour marker which is CA 125 - this was high when my cancer was diagnosed but has gone right down with treatment. The problem with markers is that they can fluctuate due to things other than cancer so it’s not very accurate. My Onc tested that every 3 weeks through my chemo and each time said don’t worry if it goes up and down a bit.
I know from other threads that there was at least one lady who had nothing show in her cancer markers but she had cancer.

An MRI is much more accurate. I had one prior to my surgery as I had lobular cancer which is very difficult to detect on a mammogram. I was told then that the problem is it can show up things too small to even biopsy - don’t know how accurate than info is.

I think I’d be asking my consultant more questions about his rationale for every 18 months and for a mammogram as opposed to an MRI. Once you know the thinking behind his decisions it may put your mind at rest. You could also say your thinking about a private MRI instead as you’d be willing to pay. You’d need to have a consultant to authorise it anyway as I was told you can’t just go for a private MRI. If you have a good relationship with your consultant I’m guessing you’d like that to be him.

take care
Elinda x