Follow up after treatment
Follow up after treatment Hello, I am attending a group session in a couple of days which is looking at how long breast cancer patients may need follow ups ? Do you think three years is long enough or five ? What would your reasons be for however long ?
What are your thoughts ? I would like to collect a few !
Pat
Follow ups. Hi Pat,
I was diagnosed last March and currently at the herceptin stage of my treatment.
Last month I saw my onc who told me that I would be in her care until I turned 50 and was passed over to the breast screening program.
As I had just turned 43 when DX that will make 7 years in total that I will be going for checks. Something to do with me being her2+ I think.
At the moment I’m at the 6 month visit to the breast clinic stage and 3 month visit to the onc.
Hope you enjoy the course and come back and let us know.
Michelle.
I don’t think that 3 years’ follow-up is long enough, but I’m biased as I had a recurrence picked up after 3 1/2 years! I think that as the survival stats (for what they’re worth) are based on 5 years, it makes sense to stay in contact with your onc during that time period at least .
Ideally, though, I think that once you’ve had BC, you should be monitored annually, or in line with the national breast screening programme (sorry, not sure how often women are given a routine mammogram as I’m only 35!). This is because a lot of the women with secondaries that were having chemo at the same time as me seemed to have had their spread diagnosed after 7 / 8 years. Maybe this is purely coincidental, but I’m pretty sure that an annual check would have been helpful in their cases. And as much as we want to get on with our lives and never see the onc again, I feel that for most women, the “what if” element is always lurking somewhere. A regular check-up would help put our minds at ease.
I was also interested to read that the previous poster still has regular contact with her breast surgeon. I only had about 3 appointments with mine post-mastectomy and reconstruction and last saw him at most 6 months after my op. That postcode lottery again!
Hope good things come from your meeting!
Mel
my feeling is l would like annual check up for at least 10yrs just to keep channels open and have any anxieties dealt with quickly.l am an awful coward so am biased and also almost 3yrs post dignosis so worry about being cast out alone!
sharon x
hope this helps
at least 5.
i would be scared to be left for only 3 years. i know it can come back at any time but at least you would know they are watching closley for at least 5 years.
sharon. x
I was diagnosed 4 years ago and have been fine ever since, but was alarmed to be told that my annual check-up, due this month, will not now include a mammogram because I “don’t need one”.
Now I’m wondering what my options are, as I feel worried about not being checked. I kind of thought it would be at least 5 years.
FOR ANGELFALLS. Hi Mel,
Just to clarify a few things about seeing my breast surgeon in the clinic.
The breast surgeon I am under at the clinic did my first two op’s WLE & SNB but it was another surgeon (plastic) that did my mast and recon and I only saw him twice after leaving hospital. He did say he wanted to see me in three months time at my last visit in August but I’ve never heard anything.
I was at the breast clinic for my 3 month check last November but didn’t see my breast surgeon but her SHO. In May it will be my 6 month check and I expect to have a mamogram and maybe see the surgeon this time. Expect after this I will be having yearly appointments.
Just wondered if you also go to your breast clinic like I do.
Sometimes I’ve found out that they don’t bother seeing you if you are already being seen by someone ie an onc as I did have one of my previous appointments cancelled at the breast clinic as I was seeing my onc at the same time.
I know that hospitals do things differently.
Good luck with your treatment.
Michelle.
different I live in France so maybe they do things differently here but was told by my onc that they have around the same amount of ladies diagnosed every year as the Uk but have a better survival rate in France. I dont know why that is, either the treatment at the time or the follow up? who knows.
I have finished my chemo and rads finished last April. I have a check with the head onc every 3 months including a blood test. She said this is for the first 2 years then every 6 months there after and have to see surgeon once a year for the rest of my life ! (does he know something i dont lol) and before i see him i have a mamo, blood test and lymph node & breast scan.
I had a blood test this morning so every 3 months i just get over one visit and test and its that time again. My hair still shows no signs of growning so after 14 months i think i can say thats that. But not complaining , happy to be alive and the sun is out too.
What a good question Hi Moneypenny,
I think that the amount of followup should be more personalized and vary by the traits of the cancer.
I had a very aggressive, fairly advanced ER-,PR- cancer which I was told would come back very soon if it came back at all, yet I am set to have about ten years of followup until I become part of the normal screening programme. I am not sure that this is a good use of my time or my oncologist’s. Now, maybe this is a good idea because I have had some new drugs, including herceptin, but I am not so sure that the followups are that beneficial to me. I have done some research and the type of cancer I have mostly tends to run to the liver and the brain, not involve local recurrence or new bilateral cancers. Furthermore, people with my level of spread and my type of cancer all seem to recur within the first three years. There are new techniques that can be used to spot liver recurrences and brain mets early and greatly extend life, so I think that these would be more beneficial for the first few years for people with my type of cancer rather than the followup provided.
I guess the rationale for having a two to three year followup is that this is the period when local occurrences tend to happen and that is what mammograms tend to pick up, but ER+ cancers in particular can recur later, so the door should remain open for a long time. Also, I think that patients who have a high risk of bilateral reoccurance should get a more intensive followup.
Anyway, my two cents’ worth.
Take care,
Christine
Hi Michelle,
Thanks for your reply to my query. No, I don’t have any contact with a breast clinic. All the follow-up where I live is done purely through the oncology team. It always amazes me that things are done so differently in different parts of what is a pretty small country. And then when you compare how closely people are monitored in France, the USA, etc. you wonder what on earth is going on here!
All the best!
Mel
Follow up Thank sooooo much for replying everyone ! I will take all this with me tomorrow.
Pat (Moneypenny)
follow up I’m going tomorrow too. My view is that follow up is a waste of time so I haven’t gone once to any follow up. NICE guidance stresses the importance of early diagnosis, and says that frequent follow up makes no difference to survival rates.
So I can find better ways to spend my time.
That’s what I will be saying tomorrow. Some women like it for reassurance. I don’t find it reassuring as even if you attend there’s no guarantee your cancer will wait until your appointment day to pop up. In fact 8 out of 10 recurrences are found by women in between appointments.
Mole
But if your cancer marker has gone up ( as mine is checked every 3 months and i know it not a 100% test but it is a good indication or they wouldnt bother doing it!) or the onc can feel something you havent noticed yet surely that has to be better, than leaving it 6 months or a year till you find, and give you a better chance. It can make something operable - inoperable. My mother in law had bc, about 15 years ago, after her treatment went for regular 3 months checks (she lives in Jersey CI) about a year after rads (she didnt have chemo) they thought they could feel something in her thyroid. Turns out it was in there, so another op and some different treatement and that was about 13 years ago. My point being, if she hadnt gone for her 3 monthy check she wouldnt be here (possibly) today as it could have spread before she knew anything about it etc etc. If she had no idea say for another 6 months it could have made it inoperable. So have to disagree mole.