Oncology appointment

Hi Robin

I have had 4 cycles of Paclitaxel and Carboplatin, followed by 3 brachytherapy sessions and I had exactly the same concerns as you have, both about only 4 cycles and the lack of future scans for check ups.   I was told the same about blood markers - but surely if we are unlucky enough for a recurrence to happen elsewhere in our body then that might show in a blood test?  

My concern is that I had no symptoms other than bleeding and was feeling fit and healthy  - so it might be ages before I notice something not right, by which time it might be quite advanced.  At my age (69) I have loads of random twinges and aches - I fear that I will turn into more of a hypochondriac than ever!  A friend has told me that she felt the same when her treatment ended, but gradually she learned to relax a bit about it.  I am seriously considering paying privately for a regular scan - perhaps once a year, but would like to do this with guidance from my oncologist, as I don’t even know which scan would be best.  I want to discuss it more when I have my next appointment in June.

As for the 4 cycles of chemo - I was stage 1a, grade 3 carcisarcoma and was told it was a very aggressive type.  My oncologist always said 4 cycles, followed by brachytherapy and I queried why not 6 cycles, which seemed more usual.  She really did not feel it was necessary for me and that 4 would be plenty - however she did agree to review it after my 4 th cycle and that if I really wanted to have 6, she would arrange it for me.  I was happy with that and I did a lot of research - a lot of it was contradictory and quite out of date and I couldn’t find the answer to the dilemma.  However, I struggled with chemo towards the end and felt quite as though I had been hit by a truck!  The first 2 cycles were ok, I had pains and peripheral neuropathy, but only felt rotten for a couple of days - however cycles 3 and 4 were different and I was very dizzy, breathless, palpitations  - they found I was anaemic and other levels had dropped.  My oncologist just told me that I was in more danger of causing damage to my organs by having cycles 5 and 6, than of getting any possible added benefit.  I think at that stage I was relieved to stop, I know my hubby was!  However I still have mixed feelings and worry that I should have persevered to give myself the best chance - it is so difficult isn’t it.  
I do find it concerning how different consultants and hospitals do things slightly differently - I know that we need to have faith in their advice, but ….

Good luck with your treatment- I had not heard of a paxman machine x

Hi GwenDot

We sound so similar in our journey,  like you I was fit and healthy minding my own business when I noticed some spotting at the end of January this year. Our concerns are the same, I am so sorry to hear that the chemo knocked you about abit but at least that helped you make your mind up. I hadn't even considered a private scan, what a great idea. Even once a year it would be worth it for my peace of mind. Like you I don't want to have every little ache and pain  worrying me. Please let me know what your Oncologist says about this when you ask the question.

Stay safe Robin xx

Hi Robin27. I think the reason I had 6 cycles of chemo as it'd been some months (10) since my Brachytherapy treatment so my tumours had time to grow, whereas your chemo is swiftly after your hysterectomy and it seems like 4 cycles is the norm.

I noticed GwenDot mentioned feeling more poorly towards the end of her treatment due to anaemia. My blood cells went down from 130 to 120, then 110. When they got to 84 I had a blood transfusion and after I felt so much better. Previously I had felt dizzy and out of breath so you will be monitored.

After you won't have CT scans as a matter of course, they tend to avoid due to the dangers of radiation therefore it's up to patients to notice anything out of the ordinary which I agree is hard to take on board.  I definitely knew something was going wrong with my body and my Oncologist was swift to act.

I now have blood tests every 3 months, this will check my CA125 which are tumour markers. My level prior to chemo was 100, relatively high and currently stands at 19 (good). I'm about to have a scan to check how the last chemo cycles worked.

Hope I've stitched up a few holes in the safety net - if you've more questions come back and ask.

Big hugs, Barb xx

Thank you so much Barb for taking the time to write. Oh so the CA125 is a marker if you have a tumor. I was told by the consultant that it's relevant to ovarian cancer not womb cancer or have I miss understood him? Would that mean that they have my marker results for prior to my operation?

Hugs Robin xx

Interesting how different NHSTrusts deliver plans to treat womb cancer. For example I had a baseline CT scan just after my first Chemo and will have another after treatment ends. I know many ladies on this group having had only 4 cycles of chemo and I know other ladies that have decided Not to have Chemo when given the choice, mostly all are doing well. I remember my Consultant Oncologist said they'll aim for six cycles if my body can take it but stop at four which will be sufficient to  halt any cells lurking.

Hope this helps x

I know Mad. There doesn't seem to be a standard as such but maybe that's because they try to take the individual needs of the patient too.

I will just have to chill a bit and trust that they are doing what's right for me. 

Robin xxx

Yes we must have trust in them as they must have our best interests. Chill and relax now. Hope you sleep well tonight knowing there's a plan made just for you.

X

Hi Robin27. I was also under the impression the CA125 only related to Ovarian Cancer but my Oncologist said my future quarterly blood tests would include CA125. As I mentioned he told me my levels had gone from 100 to 19 which was all good.

I had previously asked if I'd have a quarterly scan (I'd be happy to put up with the dangers of X-ray radiation) and he said the blood tests would be sufficient so I guess I must put my faith in him. 

Hugs, Barb xx

Hi Barb

Yes we must trust them, I would be happy if they could use a blood test as markers for me if they aren't going to be scanning. Your CA125 has come down beautifully you must be really pleased.

I have had a text today saying that the Oncology nurse will be calling me Friday so I expect that's when I will get my 1st appointment date. 

Best regards Robin x

I completely agree with you - I would be happy with either blood test or scan, but just being asked how I am feeling, or having an internal examination, just seems scarily inadequate!  I am not worried about radiation dangers either - I would welcome a regular scan to be able to have some peace of mind x