Late start if treatment

Hi Mopit

I was also a stage 1b and grade 3. 

I am sorry that you had a delay before your radiotherapy and I can understand your concern. 

At stage 1b the cancer was contained within your womb and should have been removed by the surgery. The radiotherapy was therefore likely to be adjuvant and to mop up any stray cells that may have been left behind. 

Are you supposed to be having check ups now? At the end of my treatment I was referred back to the oncology nurse team for check ups every 3 months for 2 years. If this is the case for you I would expect that you would be offered a check up in the next few weeks. 

Perhaps the best thing to do is to contact your CNS (phone or email) and to ask when your check up is due and say that you are worried as treatment finished 3 months ago and you thought you would have had an appointment by now. From memory I think my first check up was at around 4 months. 

Jane

Thank you for your kind words.  My problem is that on top of the grade 3 I also have mmrd, msh6, p53mtp and lynch syndrome making it the most aggressive endometrial cancer there is.  My oncologist had absolutely no idea how to treat, hence the long delay, as this combination of nasties is very rare. I know the delay in starting treatment will cause me major problems I was seeing if there was anyone out there who may be able to give me any further info. Hopefully when I eventually get to see an oncologist they may be able to elaborate.

You could give the Support Line a call and talk to one of the nurses. They may ne able to help.

Thanks but no thanks!

Platitudes are the only thing they come out with!!!!!

Perhaps try to contact your team again and if they are not able to answer your questions/ arrange for you to see your oncologist- then perhaps ask who you can go to for help. I can understand your concerns and you are entitled to be seen and have your concerns addressed. 

Why I suggested the nurses on the Support Line ( they have their own dedicated menu on the Support Line) is that they can help with the medical questions rather than giving emotional support if that is what is needed. 

Although the nurses will not be able to give specific diagnostic advice they may know who in the wider care team structure should be able to help and will be able to suggest next steps if you do not get the needed support from your immediate team. 

I hope that you can get the answers you need soon. 

Thank you so much for all your input.

I did try talk a few weeks back. I went round in circles for ages just to end up being told to "join the online community"  so I'm not doing that again.

You would think that as the only treatment I could have was radiotherapy (my cancer is resistant to chemo) they would make more of an effort to have sorted out timely treatment or at the very least arrange proper follow up.

I am now looking at the very high probability of distant spread due to the aggressiveness of my cancer and not beibg able to have Chemo as a back up.

Sorry ranting but life sucks at the moment!!!

Mopit, are you in England?

Yes

Have you tried contacting PALS?

Yes twice - absolutely useless.

They took all the info both times and did nothing.

My whole experience has been a nightmare. At my first 2ww scan I was told to use HRT. It took another 7 months with me complaining to my GP and being made to feel as though i was a hypochondriac before I was referred back to the hospital and diagnosed - so much for early diagnosis being key.

I then end up with an oncologist with no idea how to treat me, who then goes on holiday without signing the all important second opinion letter resulting in a 4 week delay. (Even then I still never found out what happened). Luckily the Royal Marsden gave me their opinion which I insisted that the radiotherapy department acted on as it was now 12 weeks without any communication from my oncologist.  I think that i would still be awaiting treatment if I hadn't. My macmillan nurse was great and managed to sort out a start date.

Ranting again, so sorry!