Adjuvant treatment

I was diagnosed with exactly the same, but was told at my follow up appointment, that I had moved to stage 1b because the cancer had very slightly invaded the muscle of the uterus. My oncologist said, that if that hadn't happened, I could have got away with no treatment, so perhaps it's not that unusual not to be offered treatment at stage 1a. However, I would ask more questions, because, having requested another appointment with my oncologist, to clarify a number of things, I was told I had the p 53 mutated oestrogen receptor, which put me at a 30% risk of the cancer recurring! A bit of a different story to the first time! It might be worth asking if your tumour had this P53. I would ask more questions, especially as your cancer was high grade. I was very resistent to treatment, having been told, at the first appointment I was very borderline, but all that changed on Wednesday when I heard the percentage for the first time. I do hope this helps. Good luck and let us know how things pan out for you.x

Oh thank you so much for your prompt response and good advice. I certainly will be asking those questions! Although my surgeon was brilliant she was also very abrupt & when I asked for copies of histology report etc when she said I won’t be seeing an oncologist ( I wanted the reports to show my sister who is a doctor)  literally just told me to “go, be happy & enjoy your life”! So I got no where! She just said she’ll put everything in a letter but of course that letter will not arrive anytime soon! I do hope your treatment goes well for you - it absolutely will & you will get the peace of mind that you deserve. Sending all good wishes your way x

Luckily my surgeon was absolutely lovely and popped in to see me at both my oncology appointments. I think I am lucky being here in Bristol, with a top class oncology department. Get those answers and whatever YOU decide, will be right for you.x

Hello P.Pitstop

Am glad you are recovering well from your operation. 

There does seem to be different approaches with different hospitals regarding follow up treatment. Although in some ways it is reassuring to be told that the cancer was contained in the uterus and no further treatment is needed, as a fellow grade 3 I do understand your concerns. 

If you want an idea of what other people have had you can do a search on the forum. Go to the womb cancer main page and type stage 1a, grade 3 treatment in the search box. You will find that there are several different types of grade 3 cancers.

Due to my own experiences I would be requesting a copy of the histology results (these may possibly be with your GP already- mine were sent direct) and possibly a copy of the pre surgery diagnosis. This would contain things such as p53 type, er/pr positive/negative etc Basically the full diagnosis. I would also be asking which specific type of grade 3 you had.  I would then be wanting to discuss this either with the current oncologist, an alternative oncologist or at the least one of the oncology nurses- just to talk it through and find out specifically why they do not recommend adjuvant treatment as although it is an early stage it is a grade 3. At my hospital all grade 3 would have some form of follow up. I know that hospitals can be different but it is your body and you need to feel informed. 

I would be asking what the criteria are for your hospital to "qualify" for more treatment and why they do not feel it is of benefit. I would possibly also ask for it to be discussed again at the next MDT if you feel you would like your results/treatment to be reviewed again. 

It may well be that there are factors that mean your cancer is very unlikely to return but then these need to be explained with you? When I was told I needed radiotherapy I was told that it would be a one time treatment and it was advised for me to prevent recurrence, if I had a lower risk of recurrence they would have sort of banked it to be able to use it at a later date. I also had chemo. I was surprised not to be offered brachytherapy as a lot of grade 3's on here seem to have it so I asked my oncologist who explained that my cancer cells had not reached my cervix so it was not necessary. That simple explanation made a difference because I understood why.

Are they offering any follow up observations. I am seen every 12 weeks for 2 years for check ups. This is maybe another way they could support you.

I am not saying either way that you need follow up treatment or that you don't need follow up treatment, we are not medically trained on  here but following my own experiences I would think its highly reasonable for you to go back to one of your team and to ask for further clarification on the decision. 

Good luck and please let us know how you get on. 

Jane

Please ask to see an oncologist and go through your pathology report then decide once you have had that meeting. The same thing happened to me I was Stage 1A Grade 3 all contained in a polyp and had the same surgery as you robotically on 28 Feb. I unfortunately had to wait 6 weeks to find out my exact type from the pathology report. I was not serous but Grade 3 poorly differentiated, atypical endometrial adenocarcinoma . My surgeon said "nothing to worry about, go and rest get on with your life and you'll be seen in six months'. I asked to see an oncologist and on 2 May he went through the detail of my report and recommended 3 brachytherapy treatments which I finished last week. I'll now be seen every three months for three years. However, we are not medical people and as others have said once you have all the information, whatever you decide that will be the right decision for you. Hope you can see the oncologist soon and do let us know x

Thank you so much - I have rung the CNS service & my queries have been triaged - a nurse will be ringing me back soon ( hopefully) . I am so glad I posted this on here - you’ve been very helpful. Thank you again xx I hope you’re well x

Thank you Jane I have made a call and awaiting to speak with CNS . Need clarity! You’ve been very helpful - much appreciated I hope you’re feeling well and enjoying the sunshine xx 

Hi, I was diagnosed with stage 1a grade 3 mix endometrial/ serous cancer in late July 2022. Preliminary MRI and CT scans showed no spread. I had a total abdominal hysterectomy in early October - uterus, ovaries, fallopian tubes and cervix removed. Post op histology confirmed the cancer was contained in a fibroid which had not breached the wall of the uterus. The oncologist recommended I had PDR brachytherapy to reduce the chances of the cancer returning to the vaginal vault. He did not think chemotherapy would be be necessary.  In my case the brachytherapy was done at the Weston Park Cancer Hospital in Sheffield. It involved a small amount of radiotherapy delivered every hour over a 21 hour period so had an overnight stay. It was a bit gruelling as I had to lie flat all the time during the treatment. As others have suggested try and get as much information as possible about your particular case. Each stage 1a Grade 3 case has its own characteristics. Good luck!

Thank you so much for your response and good advice. I will definitely ask all these questions and challenge why adjuvant was not offered! I wish I had been more forceful in the appointment with the surgeon but she couldn’t get me out of the door fast enough - I asked for the histology report and she flatly said “no”! All I was offered was the 3 month check up appointment which is on 2nd August. will keep all posted when I hear - thank you again xxx hope you’re doing well x 

That's great. I rang mine several times during diagnosis and treatments and they were really helpful and never minded. Yes enjoying the sunshine, been out in the garden pottering around this am- let us know how you get on or if there is anything else you need