Breast Cancer - followup checks

Phoenix1969

Hi all

Hope this is in the right part of the forum.

Early last year my partner had a mastectomy at her local hospital, followed by chemotherapy at the Royal Marsden, which ended roughly in July. I was under the impression - backed up by talking to 2 other people I know who have had cancer, albeit not breast - that there was supposed to be a 5 year programme of automatic 2-monthly / 6-monthly / annual tests to ensure the cancer hasn’t recurred.

I thought this was happening with my partner, but recently found out by chance that she hasn't been getting any such tests. Indeed she had an appointment recently at the mastectomy hospital where they were going to discharge her but, as a result of her answers giving cause for concern, she IS now being referred to a consultant.

Is this normal? If anyone has any experience of this, please share! And if the tests should have been taking place, is this at the mastectomy hospital or the Royal Marsden?

Thanks in advance

M

markdebby

This is what happened to me.
After the follow up after operation I got yearly mammogram along with 5 yrs of tamoxifen.

candlelight_2013

Yes, I had 3 monthly checks for the first year and then 6 monthly for the next 4 years, and I also took tamoxifen for the 5 years.

I also had a mammogram every year.

It is important to have these because my Oncologist said that if the cancer was going to recur, it very often is in the 2 years after the op.

Candlelightx

vulpix

Exactly the same as above replies for me too.

juliethemuse

candlelight_2013 wrote: »

Yes, I had 3 monthly checks for the first year and then 6 monthly for the next 4 years, and I also took tamoxifen for the 5 years.

I also had a mammogram every year.

It is important to have these because my Oncologist said that if the cancer was going to recur, it very often is in the 2 years after the op.

Candlelightx

oh god I didn't know that.

bouicca21

5 years of annual mammograms and medication.

But given this was a mastectomy rather than a lumpectomy, it was presumably more advanced.

I did find that I needed to take a notebook with me during treatment discussions because there was a lot of information to take in and I was still in too much shock to take it all in unless I wrote it down.

Miró

I had 6 monthly checks for the first year then have been having annual mammograms for the last 10 years. I have one booked for next week and if that is still 'no evidence of disease' I expect to be discharged. Has anyone else had them for 10 years?

sheramber

Phoenix1969 wrote: »

Hi all

Hope this is in the right part of the forum.

Early last year my partner had a mastectomy at her local hospital, followed by chemotherapy at the Royal Marsden, which ended roughly in July. I was under the impression - backed up by talking to 2 other people I know who have had cancer, albeit not breast - that there was supposed to be a 5 year programme of automatic 2-monthly / 6-monthly / annual tests to ensure the cancer hasn’t recurred.

I thought this was happening with my partner, but recently found out by chance that she hasn't been getting any such tests. Indeed she had an appointment recently at the mastectomy hospital where they were going to discharge her but, as a result of her answers giving cause for concern, she IS now being referred to a consultant.

Is this normal? If anyone has any experience of this, please share! And if the tests should have been taking place, is this at the mastectomy hospital or the Royal Marsden?

Thanks in advance

M

Follow up at Royal Marsden Hospital

https://www.royalmarsden.nhs.uk/sites/default/files/files_trust/open-access-follow-up-after-treatment.pdf

DUKE

I had a lumpectomy, chemo, radio, Herceptin, & 5 years on Tamoxifen. Can't be sure but I think I used to go every 3 weeks with treatment, then 3 months, then 6 months, then yearly. But everyone's different due to the many different types of breast cancer. A woman who was there the same time as me didn't have any further treatment after the op & was discharged.

vintagebrighton

It really depends on what type of breast cancer and the treatment. For example, some breast cancer's are hormone receptive so you're prescribed medication for a number of years following treatment. Other breast cancers don't have any receptors ie triple negative so there's no ongoing treatment after chemo etc. I think generally though, the minimum is yearly mammogram for 5 years following treatment and the option to contact the breast care nurses if there are any concerns. Maybe contact the BCN as a first option to discuss your concerns.

VB x

bright_side

If in doubt please ASK, ASK, ASK!!

My dear big sister was under a consultant following removal of a cancerous brain tumour. She had annual checks for 15 years and as far as we knew all was well.

When she began having symptoms (which she hadn't had originally) her consultant asked HER why she hadn't had a scan for 6 years!! WHY? because she hadn't been asked to go for one, therefore assuming she didn't need to

Eventually we discovered that the two hospitals she was under hadn't been communicating as well as they thought! My faith in health care professionals isn't what it once was

Wishing your partner all the very best xx