Chemo finished: Is believing it has worked an act of faith?

I had what I sincerely hope was my last ever chemo 10days ago now. I should be happy, or at least relieved, but I feel so upset and mixed up about it all now.
At my last appointment with the Onc, she said she would ever be able to give me the all clear and just to be vigilant for any pain…
I have to have a mx after christmas and possible rads, and one more appouintment with her, but no final scan…no closure.
I’m screaming inside…Is it gone???
Do I just have to believe that it has worked? Believe that the cancer is gone?
If so, how do I convince myself?

Hi Tree,

It’s know it’s no comfort at all but we all feel like that. Like you, I had my chemo before my mastectomy. It does give us a slight advantage in that the surgeon will be able to see what effect the chemo has had on your tumour. Mine reduced from 12cm to 1.5cm so it was fairly obvious the chemo had the desired effect. All the same, I will never have the “all clear”. It’s taken me more than a year to just accept it and get on with living. My last herceptin is due on 28th December and I am now beginning to believe I have a future. You won’t believe it now but I’m sure you’ll get there too.

I’ve just signed up to trek South Africa next November with BCC. If you told me this time last year I’d be doing that I’d just have laughed.

You still have a way to go honey but hang in there. Jan xx

Hi Tree I too had chemoo first and scans after 1st 3 showed no change in tumour then a change of chemo for next 3 and MRI still showed no change. Surgery followed WLE and ANC then re-excision for better margins.Advised to have surgery after duff scans and still the possibility that more chemo would be required. BUT the pathology did show response to chemo so you might like to ask to see your report. My surgeon did come to see me when I was still in recovery unit after surgery to tell me that he thought the tissue he had removed showed a response to chemo.I was still very upset and mixed up at that point and had to see it in writing 2 weeks later.Had rads and next mammo due Jan.I don’t think we ever get the all clear( My Onc says there are no guarantees) but no evidence of disease will do for me. Love JAckie

The only way I cope with it is to recognise that I have done all that is medically possible right now. I have had all the treatment there is available and there isn’t much else I can do. There is no guarantee of anything with this disease unfortunately.
You will probably feel better after your mx - I know I did.

Hi Tree,

It’s all a matter of time. You will find as time goes on that you think of it less, worry less. It’s natural to worry a lot to begin with - there is no test or scan that can tell us we are clear of cancer. Just try not to let the worry take over your life. Take each day as it comes, and try to find something good in it.

I finished herceptin two years ago. Mostly I don’t worry now, but I still have my dark moments occasionally. I have a friend who is ten years on who barely gives it a thought anymore.

Jan, you give me hope! Before my diagnosis I was planning to go off to Africa/India to do voluntary work. I assumed I wouldn’t be able to do that now.

Back on the agenda!

Glad to hear it Jo90. I just needed something to remind me I still had a life and this seemed like a good start.

Tree, I’ll be thinking about you. Christmas might not be a very happy time for you and your family this year, I know you’ll be anxious about your op. Last Christmas I had just finished my rads and it was S**t. I was so tired and sore I could barely move and I couldn’t understand why I wasn’t happy the treatment was over. I honestly can’t believe how far I’ve come. I’m not special or different from anyone else so there’s no reason to believe you won’t be the same by next year.

Jan xx

Thanks Jan, and others for posting.
Guess its just time. Walked to the shops for the first time in weeks yesterday, and sobbed all the way there. There was no trigger. Just carry such a dark sadness around with me.
Even if I find myself feeling happy, (with 3 children all at home for christmas, I have much to be happy about) I find moments/periods of intense sadness follow. I try to keep ‘positive’ but I find cancer comes to find me, where ever I try to hide.
Im trying to block out thoughts of the operation.
Had a bad time post lumpectomy, ending up in that night A&E with a massive hemotoma, where I was left for 3 hours unseen by a doctor…
Guess things will be different this time.

I’m not sure you want to know this after all the positive messages but here goes. I had mx first with no nodes affected and have had first chemo out of 6, with RADS, herceptin and Tamoxifen to follow. I saw the oncologist yesterday and told her I had a bit of money from a critical illness policy and was thinking about putting it into a pension (tax advantages) but if I did, I wouldn’t be able to get at the money until I’m 55. I’m 42 now. She said there are no guarantees, the size of the tumour (52mm), the fact is was grade 3, and that it was HER+ are all extra risk factors. She said ‘you might want to keep your money somewhere more liquid’. I was devastated as I thought the mx had taken the tumour away and that the other treatments were precautionary as it hadn’t spread to the lymph nodes. I’m trying not to think about it and can’t possibly tell my husband whose mum died 5 days after my dx. That’s sort-of why I’ve posted on here. I can’t even post it on the thread I normally use as I feel I know those ladies too well (wierd since I’ve never met any of them). Anyway, I think we have to believe we will get better, otherwise it will spoil what remains of our lives. But as soon as treatment has finished, I’m going to blow some of that money on a fantastic holiday :0)

Nottsgirl, thats a shocking thing to be told. Not sure you should keep it to yourself either…especially from the people on here…
The fact is, it’s cancer we are dealing with. There is a reason why it’s everyones worst nightmare. Why it is universally feared…

DEfinately book that fantastic holiday.

Nottsgal - I know when I talked to my onc about long term prospects he said - yeah we are treating this which could be over treatment but you just don’t know and he couldn’t guarantee anything including reoccurrance which can be high with BC. He described the end of treatment as going into remission - it might be 6, 10, 15, 20 years or a life time you just never know and I think they are very cautious about the so called ‘all clear’ syndrome. Money advice I can’t give, you just have to do what you think is best as they say live for the moment but don’t go spending all your money. I’m gald your claim went through not even sure my critical illness claim is going to be accepted which I’m going to be mighty pissed off about if it isn’t.

take care

Reeb x

Thanks Tree and Reeb,

I know I shouldn’t have asked the question if I didn’t like the answer and you are right Tree, I was considering BC as a nuisance that was going to muck up my life for a year or so and rob me of a boob, rather than thinking it could threaten my life.

Reeb, good luck with your critical illness insurance - mine wasn’t a fortune as I took it out to be enough to cover the mortgage on my first flat 20 years ago. I thought they might not pay out but they said they don’t pay out on ‘non-invasive ductal cancer in-situ’. Mine apparently wasn’t this - I thought it couldn’t be as it was no longer in-situ after the mx. I’m not planning on spending all the money but I think stuff the tax advantages of pensions and I’ll stick some in a ISA.

Pam
xx

Thanks for this Nottsgal, we are about to tie up most of my pay outs in investments. (57mm grd 3 IDC ER+ 5/29 nodes).
Mx done 2 weeks ago.

I shall now be asking the same question of my Onc in Jan when I start my Chemo, how much he squirms might change our intentions!
Px

…just a thought while in the shower… lets not forget all the research going on in our favour here. Maybe in just a few years something even now in the pipeline, may be able to give us much more certainty of long term survival.

For today we have to get on with the here and now, but who knows what tomorrow will bring?

Px

Nottsgal - just had a letter and the claim has been accepted. My sister had BC many years ago and they were questioning the date of when I knew but the under the medical terms there was no question I qualified, I felt they were going to try an wriggle out of it on a technicality.

Reeb x

Reeb,
Glad to hear your claim is going to be paid. Bad enough to put up with the BC but having your claim rejected would have been adding insult to injury. That’s awful that your sister had it too. I actually took out my policy because my grandad had multiple sclerosis and that was my fear.

Take care
xx

Hi,

Sorry, I hope you don’t mind me buttin’ in.

I just read your post and the same thing has been going through my head for a week. I’ve just finished 16 months of treatment - MX/ Chemo / Rads / Herceptin - I foolishly asked if I’d get a scan to see if the treatment had done its job - but got told, ‘Oh no, we don’t do that’. Ok, so how do we know if we’re clear ? ‘You don’t - we don’t give BC patients the ‘all clear’ because we can’t guarantee it won’t come back’. Blimey…I was so happy to have finished my treatment only to have the wind taken right out of my sails, by this.

Yearly mammograms, don’t cut it for me - they didn’t show-up the
6.7cm tumour I had !!

Sorry, to rant…I feel better for getting it off my half-baked chest. :slight_smile:

Scoobyred.

Think thats the same thing doing my head in, Scooby.
After the lumpectomy they found another tumour UNDETECTED by all the scans and mamograms I’d had since finding original lump. I keep saying to them , ‘well what about the other breast? How do I know it’s ok?’
But I manage to leave without any answers…

Hi again,

My 12cm tumour didn’t show up on a mammo either. It was Inflammatory Breast Cancer which is rare, aggressive and doesn’t generally show up so I won’t be relying on them in the future. I also stupidly asked the question of my Onc at the end of my treatment which is why it’s taken me a year to get to the point where I can believe I have a future. I certainly don’t take survival for granted and definitely agree that you should live every day to the full. (Book the holiday!) But, I am now beginning to look forward and feel much better for it. Yes, it could still come back and bite me on the bum, but until then I intend to make the best of it.

Best wishes everyone for at least some peace of mind during Christmas time.

Jan xx