I had my last radiotherapy session just before christmas last year following mastectomy (and node clearance from both under arm and chest) and chemotherapy.
I have had a yearly mammogram on remaining breast which was normal and was supposed to see consultant in april but due to corona it was just a telephone call.
I was expecting to have more tests etc but the consultant just basically said that’s it , we will see you in a years time. I asked about tests, scans etc but they wont do anymore. The consultant said they were “working on the assumption that they got it all”! He seemed surprised that I fealt no reassurance to that comment.
So I feal totally in limbo. I guess I was hoping to get a scan and hopefully an all clear but instead have just been abandoned. Not sure what to do now or how to move on, my anxiety levels are as high as they were last year and I don’t feel reassured at all.
Was wondering if anyone else had scans or tests when active treatment finished or if that’s just it?
It’s a horrid feeling being cut loose but, so long as they have instructed you clearly on how to remain vigilant, they have done their bit and you are now regarded as healthy. You were cancer-free as soon as you had your surgery. However it’s hard to accept that, with the idea of a recurrence lurking in our heads, we are medically free of cancer and therefore don’t require treatment.
There is an excellent article that was posted in a reply by one of the nurses. I wish they’d set up a library and put it there but, meantime, I keep passing it on. I’ve rad it regularly and I really do suggest you give it a good read. This bloke knows what he’s talking about and how we feel: workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
Do you live near a Breast Cancer Haven? They provide all manner of support for people with or who have had breast cancer. You might also ask about the Macmillan support services in your area (often attached to the hospital) and find out if there’s a Maggie’s. I was told about a local FaceBook group for people with breast cancer and it’s been helpful to know there are like-minded people nearby. You might find your breast-care nurse is the person who will be able to signpost you locally. A lot of women are glad to see the back of it all but I think just as many still feel the need for emotional support. I know I do, even though I’m still having treatment twice a year.
As regards tests, your only option would be to have them done privately. They are expensive but you may consider the peace of mind you get worth the cost. As for anxiety, your GP can help you with that. I make use of the YouTube videos I used during treatment and they have been a boon, particularly Progressive Hypnosis and Michael Sealey videos. Maybe you’d find something that soothes away that anxiety a bit.
I wish you all the best in looking forward now. You’re healthy Take care,
I am five years from treatment end but have just had another scan as I had to contact Dr because of discomfort under arm and in area alongside the surgery. He quickly arranged for me to go to Breast Clinic where I was examined by a breast nurse who did not think there was a problem but arranged a scan which I was told showed no problems only healthy tissue. I am still having discomfort but as I am on an aspirin trial I am still under oncologist and was due a telephone consult next week but this is being upgraded to a face to face. I think it is important to keep asking for help because a mole hill soon becomes a mountain in ones mind.
Hi - I totally understand what you are saying. I was told by the Breast Care Nurse that they wanted to ensure that patients didn’t feel as though they were on a conveyor belt then, after treatment, just “dropped off the end” and were forgotten - but that is precisely how I feel.
I was diagnosed in January this year and had a lumpectomy. I had radiotherapy at the beginning of lockdown, (5 “mega” doses instead of the planned 25) and have received only one telephone conversation with the consultant who then discharged me. My GP hasn’t done anything. The Breast Care Nurses have told me I can ring with any issues I have and I have had some complementary therapy treatments.
However I still feel anxious that I don’t see anyone until I have a mammogram next April.
Maybe I can help. I was diagnosed end of Sept 21, ER/PR pos, HER neg. I chose mastectomy (although they offered lumpectomy/radio as similar efficacy). I had to go through radio as well after finding 1 out of 3 pos lymph nodes. No chemo. I am now on exemestane for 10 years.
As you, without feeling lost, I thought having a scan would help with my peace of mind. My consultant said no, and explained that for stage 1&2 scans are not recommended; the chance of being false pos is far greater than picking up a tiny metastasis. A false pos scan will lead to unnecessary investigations, worries and even unnecessary treatments. I have checked UK/France/US/Canada/Australia guidelines-all recommend the same, no scaning at this stage. I went even further, checking all available trials on difference in survival between secondary spred when clinically obvious and picking up a met by a screening CT in someone otherwise asymptomatic. Well…the good news is there isn’t any. So if I discover a lump or whatever else a few months or years down the line, my survival would not be better or worse than picking it up a little earlier by a scan. This reassured me enough and I decided to live my life and will see what happens.
There are no guarantees I’ll be clear forever. If I’ll get secondary spread, it is more likely to happen after 5 years rather than in the first 5. My risk of dying will be the same as general population only after 20 years. I have accepted there is no scan, tumour marker or blood test to tell me it’s all gone. So I won’t fret about it and just live my life.
Take care,