Just diagnosed

Hi Victoria.   So sorry to hear about your aunt, it must be very worrying for you.  Don’t give up hope there is always something that can be done.   You’ve come to the right place for help and advice.  There’s bound to be one of the lovely ladies on here that has gone through the same thing and they will be more than happy to talk to you about their experience.  

Im sending all three of you a massive hug.   Look after yourself and your mum and aunt and always think positive.  

Best wishes.    Maureen xxx

Hi Victoria

So sorry to hear about your aunt.  I am grade 3 stage 4b, endometrioid carcinoma with squamous cell element. It is not clear cell but thought I'd reply as I am the same stage. Please see my profile for full history.

I was only offered palliative chemotherapy by the surgical oncology team.  However, since I have been referred on to medical oncology, I mentioned that I am in a lot of pain and have trouble walking, caused by the tumour and he referred me for radiotherapy. So, I am having 5 sessions of radiotherapy for symptom control in June alongside the chemo, which starts next week.

It takes a while for things to come together in the NHS and we all agree on here that the waiting is the worst thing. But don't give up hope. I wish the 3 of you the very best,

Amanda x

I agree the waiting has been the worst part, my aunt had almost prepared herself for the worst news as she said she knew her own body and something was badly wrong.   We’ve had a terrible time with gps and from the hospital when she was admitted for a week with abdominal pain. No one listened to anything that she was saying right from the beginning and we’re so angry that things have now progressed to this stage. All of the symptoms have basically been going on 6 months.  She is the one trying to be strong at the minute and me and my mum are falling to pieces. I think the waiting again for a plan of what they will do and the unknown because of this being a more rare type of cancer is so frightening. 

thank you for your reply I wish you all the best too

victoria x 

Thank you so much for taking the time to reply, I appreciate it x

I was also expecting the news but I'm sure you'll agree it doesn't prepare you for hearing someone actually saying it out loud.

I'm sorry you've all had a terrible time, I hope things get better now and that your aunt gets the care and treatment she needs. Keep talking to each other and gain strength from it, keep each other going. There are lovely ladies on here to talk to and the Macmillan telephone support lines are excellent.

Amanda x

Hello Rainbow1986 and a warm welcome to you and your aunt to our spot in the Online Community. It's a huge shock when you get a diagnosis of cancer, especially when you've been fobbed off so many times.

Please don't despair, there is light at the end of the tunnel.

I have my hysterectomy and adjuvant Brachytherapy late in 2020. Ten months later after a series of tests which came about as I was sure something was not right, shortness of breath, pain in my tummy, I was told my cancer had metastasised with lesions on my liver and spleen, masses in my Pelvis, Peritoneum, Omentum and the top of my vaginal cuff. I was inoperable, stage 4 and I too was heartbroken.

I had 6 cycles of chemotherapy, just finished on 25th March, each cycle 21 days. I had a CT scan after cycle 3 which showed a 40% reduction in the masses. I'm just about to have a CT next Tuesday and see my Oncologist a week later.

I'm feeling really well apart from peripheral neuropathy (tingling and numbness in hand and feet - may be permanent, may just stop). I look like Sonic the Hedgehog as my hair is just coming back nicely.

I have no pain in my tummy and have been off morphine for about 10 weeks.

I've been told my cancer(s) will come back and expect to start all over again about Xmas (another lovely pressie)

What I'm saying is don't despair, it's all do-able. I was (a young) 69 the day before yesterday and like most people never expected to get cancer but the treatments are far better than those of yesteryear and there's always new trials coming up.

Sending hugs to you, your aunt and family, Barb xx

PS any more questions, come back and fire away!

Hello MrsBJH, thank you so much for taking the time to reply to me. It sounds like you have also had an extremely difficult time but your optimism and progress so far is inspiring. My aunt has just turned 66 there last week so this was an unwelcome belated birthday present. 

This stage in between diagnosis and a plan is so worrying as well, every day when there is a new little thing wrong it leads to an irrational fear that the cancer is spreading quicker than ever as I know clear cell is aggressive. She seems to feel nauseous a lot and eats only little bits, she’s lost over 2 stone and is tired all the time. I must say our gps have been completely useless and that leads to even more feelings of helplessness. Chasing people up seems to have become a past time of mine. 

I guess it’s just so much of an unknown, I’m currently not much help as have been struck down with the dreaded covid. I’m also a nurse and my mind works at a mile a minute, anyway thank you again for listening to my rambling. I really appreciate it and I hope that your scan and appt with oncologist goes well

Victoria x 

Rainbow1986

Hi Victoria, hope you're recovering well from Covid, touch wood I've managed to avoid it - probably because lived like a hermit for the past 2 years.

I did lose about 10 kgs without actually trying. As all my tests and scans etc. were smack bang in the middle of the pandemic my time from speaking to my GP on 3rd June to having my op on 17th September seemed to take an age but in reality it shot by. Once the GP's made the referral the hospital teams take over and things move pretty swiftly.

I must say I've full support for people who work in Doctor's surgeries. My bestie is a receptionist in one and what they're expected to do with insufficient staff, both Doctors and admin staff, for the money she works for beggars belief. I retired 20 years ago and she's still still nowhere near what I earned. The abuse they get on a daily basis would do my head in. I can understand it, as a patient you hang on for 20 minutes or more to speak to someone and then to be told there's no appointments would make you explode. Staff leave and don't get replaced. New members end up answering phones in the early morning rush and can't handle the stress - they forget they've been doling it out for years LOL

Once your Aunt's been given a CNS to contact they, in my opinion, are always there to help and get back to you when you leave a message. Only problem they're off weekends. Otherwise for reassurance about anything call the Macmillan Support Helpline, freephone number shown below.

Thanks for the good wishes - I'll post the results when I get them on the forum.

Barb, xx

• Hi Victoria I have stage 4 b cancer of the womb diagnosed by CT scan in December I have just finished my 6 th chemo 3rd May and a CT scan last Sunday to see how I’m doing hoping for results from CNS tomorrow if they are back but have been told there is other treatments if it hasn’t one was a test for Lynch Syndrome it’s a genetic test of my biopsy and if it’s compatible I can have immuno therapy if the chemo wasn’t successful  my consultant will let me know on my next appt 6th June but I can’t have the same chemo again so there are other treatments they can give, mine had spread to pelvis under breast bone and multiple nodules in my lungs I felt really well before it all started just saw pink discharge in October I was working 2 days as well so was a big shock for me and the family you can read my profile if you click on my name the chemo wasn’t easy for me but I’m still here and hoping it’s worked I’ll update everyone when I find out but they did tell me after my 3rd chemo that the cancer markers had gone down to normal range think it was 34 goes up to 35 for normal range so I’m hoping that it has worked. There is always hope so tell your Aunt this and thinking positive will help.

Kind regards 

Mo xx