Given the all clear/in remission. How do you know?

Hi Forrest1865

I too am coming towards the end of my treatment. I’m in the middle of radiotherapy at the moment and I’m not having any problems with it as yet apart from some fatigue. I would rig your BCN if I were you she might have a better answer for you than your oncologist.

Wishing you the best of luck with the rest of your treatment.

Best wishes

Daisy53 xx

Hi Forrest1865

It is just as your oncologist says - once you have had your treatment there are no scans or follow ups , just the annual mammogram and there maybe other appointments for tweaking medication etc , but the assumption is that the surgery removed your cancer and any chemo/radiotherapy you have will mop up any rogue remaining cells. For the vast majority we know that is the case, what is more difficult is the feeling that you could be the exception, and that is just what we have to learn to live with. 

The end of treatment can be the hardest part to deal with , we are so busy going through the treatment then all of a sudden it ends and we have to go back to normal , although we know that normal won’t exist anymore. There is a really good article by a Dr. Peter Harvey , you can find a copy here https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf. 

I was completely positive throughout my treatment , and still am, but really struggled mentally when I had finished , everyone else wants you to just pick up where you left off , but I found this lack of acknowledgment by everyone I love and care about really hard , but it’s not their fault either , they were all fab during the treatment, just they will  never understand what I went through, and so hope they don’t 

Sorry if that is a bit of a ramble but do read the article.

jo x

It is the ongoing medication, letrozole /exemestane that prevents me from moving on. I had no problem with the Herceptin follow up injections but when they added the letrozole I felt awful and still do, despite the change to exemestane. The doctors forgot to prescribe the letrozole initially and between my stopping chemo and starting the letrozole my fitness levels improved, I even lost 14 kilos. With the letrozole, all my osteoarthritis kicked in not just where I had had it before I am creaking all over and my feet and ankles can really hurt. Also, 10 kilos of weight returned despite my upping the exercise and eating less. Reading the online chats I see I am not alone - horrendous drugs.

1. Thank you for replying and good luck x

Thank you Jo. I thought it would just be piece of mind if you were told or given a scan at the end, especially as I had a lot of lymph node involvement.  Like you said I guess we just have to move on in the end as best we can. I will certainly take a look at the article. Take care x

Would love to have one of the dogs that can sniff out cancer, then we would know! 

Very best of luck. We are all lucky to be herex

Me too. I've been on Letrozole for 5 weeks now-early days I know, but so far no side effects but fatigue which my oncologist assures me gets better. I've decided I'm bored with fatigue  and try to ignore. Returning to work in September,  on reduced hours, and I am worried about the fatigue. 

Good Luck with your return to work Hepi, I note the September start date and wonder if you are a teacher? I am retiring and feeling depressed I didn't get to return before the end of the year. OH doctor felt covid risk was still present and wouldn't recommend a return at the moment! Glad you are doing well on the letrozole, which brand do you have?

• I'm on sun pharma brand of Letrozole  and waiting for the side effects. My oncologist said breeziily, 'maybe you won't get any'- I doubt it  somehow. I used to be an English teacher but now I'm a carer and need my strength! So I'm joining a Macmillan gym in Bristol in the hope of beating the letrazole fatigue. Thank you for your kind words, wow this horrible journey has taken 10 months of my life.

Please keep us posted as to how you do with the Sun Pharma brand of Letrozole. My surgery has said I can try Aromasin (exemestane, original product) for 2 months to see if my side effects improve. I will post here. 

I know what you mean about the loss of time. I got my cancer diagnosis 2 years ago next month. The covid lockdown seemed to extend it and even now preventing me from getting my last half term pre-retirement. But reading the side effects of exemestane I see one is lower immunity so I can see the OH doctor has a point, especially with the new Delta variant. 

Take care x