Hi i am so sorry for your news.I cant really help i have different kind of cancer but did they explain to you why you cant have chemo or another tratment?Can you get a second opinion?

Denise

Hiya, sorry to hear of your situation.  I have Undifferentiated Uterine Sarcoma, Stage 4 metastasised to my peritoneum, and was being seen in a London Hospital rather than my local hospital in Plymouth.  When I asked what my prognosis was I was told quite bluntly, 12-18 months from diagnosis of secondaries - I have had 13 months.  My chemo, Doxorubicin, finished in December and at that time, my cancer was stable.  I was supposed to be having a CT Scan in May and to see if I needed second line chemo or if the cancer is still stable.  I have now been told that the CT Scan is delayed because of the COVID-19 and they would not give me chemo anyway as it would reduce my immunity too much.  I have now discovered they are categorising patients into 6 levels (NHS) and I am in Priority Level 6 as even with treatment, my prognosis is less than a year.  This means that if the NHS gets overwhelmed with COVID-19 Patients, they will treat patients according to their Priority Level.  Tomorrow I am going to phone my GP and see if he will take over my care.  It seems that there is nothing more that the hospitals can do and what I now need is end of life care to keep me comfortable rather than palliative care to try and extend my life.  I would like a CT Scan just to know the state a play and to know if my abdominal pain is to do with the cancer or just general digestive issues - it would make a difference as it would be managed differently.  I think that this is the least the NHS could do considering all other treatment has effectively been withdrawn.  The other issue is shielding - I was on shielding but as soon as general lockdown is relaxed, I'm off to see my family.  What's the point in shielding for the rest of my life? BIG RANT, sorry, just frustrated as I am sure that you are.

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Yes, I feel calmer now that I have sorted things out in my mind,  my husband did not want me to have more treatment as the Doxorubicin caused so much permanent damage and put me in hospital 4 times - twice life threatening.  It did stabilise the tumours though so bought me more time, but at what cost?  Now the choice to continue with treatment has been taken out of my hands.  I spoke to my GP on the phone - he was wonderful.  I said that I wanted the CT Scan just to know where I stood - he has arranged for one on May 6th.  It will go to my London hospital for interpretation and they are going to advise on how to support me,  sometimes you just have to go for quality of life over quantity.  This is possibly why they are not talking about chemo for you.  Any treatment that cannot actually cure your cancer is palliative - that is, it is designed to prolong life and relieve symptoms.  Sometimes however the treatment causes more problems than good, chemo is very harsh on your body and you need to weigh the benefits over what harm it can do.  It is very difficult.  I would ask your oncologist about chemo and why they are not considering it.  It could be the COVID-19,  chemo damages your immune system and you would have to go into shielding.  This is partly why they are mostly only giving chemo to people with a chance of a cure.  Message me if you would like to talk more.  Keep smiling - I am trying to make the most of the extra time Doxorubicin bought me.  I fought very hard to stay with it.

I have received a letter today from oncologist for a full body ct scan on 11th may and to discuss chemo it took a phonecall for them to actually listen to me I know there's no chance of a cute but I have been reading one website's and now reading people's cancer journeys on here am not so sure I want chemo I think I have come to the conclusion I want quality of life not quantity aparently this ct scan will tell them if it's spread or stayed in the 2 places it is so fingers crossed for just a little glimmer of hope thankyou for your reply xx

I am glad that you have been given a date for a scan, it will be much easier to make a decision once you have had that plus a discussion with the oncologist.  Keep an open mind until then.  Will be thinking of you.  I have a CT Scan on 6th May, ordered by my GP.  Will see what is going on with that and then manage the symptoms.  All the best.  Sue