Advice about follow-up - scans etc?

Hi

Having had a mastectomy with reconstruction last June, chemo, rads and now on Herceptin I believe the only follow-up we get is a yearly mammogram. On asking the oncologist what if it returns and what do I look for - I was told anything unusual, pain that lasts more than a couple of weeks.

Just wondering if this is the same all over the country and if anybody from abroad reads this - what follow-up do you get?

I find it very worrying that there are no scans, blood tests etc. I did find a blood test on the internet for breast cancer CA15.3 which hopefully my GP can organise in the future. I have even thought about paying for a MRI scan in due course, even though I would be scared in going into the machine but it would put my mind at rest. I don’t want to be going to the docs at every little pain and I know I won’t but do worry that things might be missed.

Liz xx

I finish my Herceptin next week and have the last appointment with the oncologist at the end of April (last MUGA scan the week before). I will be back to yearly mammograms and have pretty much been told the same as you. I asked about recurrence and was told by 2 different oncologists a low to moderate chance within the 5 year remission period, but both said they would be surprised if that happened in my case. However, I’ve also been told that if I have any symptoms I don’t like after the oncology appointments finish to contact my breast care nurse as I would be seen within a week.

Hi Liz,

My situation is slightly different, and the treatment we BC folks have differs according to what part of the country we live in.

I’ll try to keep this short. When first Dx’d and treated I was given a date for a yearly check up but could self refer if worried, which I did over and achy arm, I was scanned, everything OK so went on my way. Just before the yearly check up I felt another lump in my armpit this was dealt with and as it was a second recurrence they increased my visits to six monthly. Again just before this date I felt another lump, self referred and was treated quickly. I am still seen every six months but can self refer at any time so I am not worried.

I asked a BC advisor when first sent off for a year why I had to wait such a long time.

She told me that the majority of women who if seen every 3 months would say they were fit and well. This would take up a lot of ‘fit and well’ appointment times thus blocking the appointment times available to newly referred women. In addition she said most women who have recurrences find the problem themselves rather than through a check up appointment. This is why we can self refer (Which what I hope has been offered to you). I have been happy with this system as I have seen a doctor within a week of finding the new lumps or had constant pain.

I tell you this not to frighten you about possible recurrences, I just want to reassure you if you are worried contact the hospital again they will take you seriously if they are up to the grade.

Take care

Carol

Thanks Cherub and Carol for you replies.

I can really understand the thinking about the “fit and well” appointments. My worry is that if it comes back in the bones or liver and that if we had scans we could deal with it before it got too big.

Nothing has been offered to me as yet. I haven’t spoken to the Breast Care Nurse since last July when I was sent off for my chemo. I haven’t seen the surgeon since 2 weeks after op but I know they are there if I need them. I will ring the BCN soon and have a good chat to her I think. Just want her to check my reconstruction etc. I rang the physio a few weeks ago because I had limited movement with my back and she has been a help.

I am off to the GP in half an hour as had some routine bloods taken and he wants to see me - I suspect that it will be either cholesterol, thyroid or iron.

Thanks again

Liz xx

Hi Liz

As Carol has said, you would know long before any scan would show up anything if you had secondaries, Blood tests and scans won’t always show it up in its early stages and I think it’s quite stressful going through the process of having a scan and then waiting for the results so many times a year.

I speak from experience sadly as I have 3 monthly scans because it did come back for me (in my spine and liver) and I knew long before it was confirmed that something wasn’t right. Trust your instincts and that’s the time to seek help.

Also, if you want to know more about the signs and symptoms of secondaries (which are slightly different from local or regional recurrences) have you thought about asking your breast care nurse for more information?

Pinkdove

Just wanted to say, if you check the website for Cancer Research UK it gives a list of symptoms you should look out for following different types of cancer. I found it quite reassuring to read, so hope this helps.

Thanks everybody. I just worry I will miss something and it be too late to do anything about it. I am sure we all feel the same. It’s interesting what you say Pinkdove to trust your instincts and I think I’ll know when something not right. I’m sorry that yours did come back xx

I’ll check out the Cancer Research and also will make that appointment with the Breast Nurse. I don’t sit here worrying about it coming back but its always in the back of your mind isn’t it.I coped well with the first diagnosis and not sure I would if it came back but I suppose at the end of the day you have to and fight it.

Liz xx