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Feeling lost

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Re: Feeling lost

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.

Totally understand how you feel.

 

 

Member

Re: Feeling lost

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. 

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Re: Feeling lost

Hi Jan

Thank you for your reassuring reply.

I read through the article and your right it is an interesting and useful read and confirmed many of the things iam feeling are not unusual. I thought it was just me who couldn't get excited about the end of current treatment!

I think once some of my local support groups are open again I will try and join a support group.

Thank you for taking the time to reply.

I hope your treatment is going well, xx

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Re: Feeling lost

Hi Kaytee

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: https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-wha...

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,

Jan x

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Feeling lost

Hi ladies

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?

Thank you for reading my long post

Xx