Hi,
I have been diagnosed with womb cancer, apparently it is rare and they can't at tell me anymore than that. I had a total hysterectomy at the beginning of July but still waiting for the pathology results that have now been sent to another lab, this is the third one. The hysterectomy was fine and despite having an infection in the vaginal stitches and having two weeks of antibiotics I am doing ok physically. My mental health however is not. I first reported issues to the GP at the end of April so I am now 15 weeks on with no prognosis, no plan. I have phoned the hospital today in a state because the constant waiting is becoming unbearable. The only information that they seem to be able to give to me but this is only provisional is the it is 1b, doesn't appear to have gone outside the womb but is higher grade. They have an MDT meeting tomorrow but have told me this afternoon that they haven't received any pathology so far, so it looks like I have another week of this hell at least.
Hello Izzymum
I am sorry to hear of your diagnosis of womb cancer. Am glad that you are recovering ok now from your hysterectomy last month. Am sorry that you have had an infection needing antibiotics.
I was also stage 1b ( it just means that the cancer has invaded more than 50% into the muscle of the womb but not gone outside- was how it was explained to me) and I also had a grade 3 rare type- mine was carcinoma sarcoma. I also had to wait for my pathology and it is hard when they do the MDT once a week but it is important for them to look at the pathology results and this will help them to decide which further treatment is best for your type of cancer. It is normal for them to give a provisional stage before the results come back as it's only those results that can actually confirm it for them. I was told stage 1-2 before surgery. I wasn't told a grade until after surgery.
It is always a good idea to contact the hospital if you are worrying or have questions. I contacted mine several times while waiting for my post op pathology and was also getting in a bit of a state. It's totally natural and I get that you just want to know what you are dealing with and what you need to do next.
Most high grade womb cancers in my own experience, and from being on here do tend to need some sort of follow up treatment but this does tend to vary between different hospital criteria and the exact pathology that comes back and also your own health and wishes. I had chemotherapy and external beam radiotherapy and while it was hard at times it was doable with the support of family and friends. Being told you need some further treatment is scary but in all honesty it was not as bad as I thought it would be and once you get started it's just another part of the journey. The waiting to hear whether you need it and what you need is tough and hopefully, if your experience is similar to mine, once you have a plan you will feel it's a bit more in your control.
I hope that you don't have to wait too much longer and that they get those pathology results to the MDT.
In the meantime, if there is anything that you need, please just ask.
Jane
Hello Izzymum
5 weeks is a long time to wait. Mine came back about 3 1/2- 4 weeks post surgery from what I remember. I was also really anxious on Thursday lunchtimes as I knew that the MDT met every Thursday am and that if they were to call it would be likely at the end of the MDT about 12 ish.
My cancer was carcinoma sarcoma which is also rare and aggressive. From what they explained to me it was a mixture of cells- some were the usual carcinoma cells that started in the womb lining but there were also sarcoma cells as well. It was this that meant I would need follow up treatment- it was the mixture in my case that made it a Grade 3. With grade 3 they try to reduce the chances of recurrence and to mop up any cells that may have been to small to be seen on the scans etc so I was offered chemo and radiotherapy. There seems to be a few different Grade 3 types of endometrial cancer and they seem to be treated in similar ways from what I have been told by my team and by what I have seen on here.
I opted to have my initial diagnosis by phone as I preferred it to going in- but I was already prepared for what it was due to the nurses who did my biopsy. Because I had been waiting and getting more and more anxious about the post op pathology in the end I kept emailing the consultants secretary and on the last time the consultant phoned me within 10 minutes and gave me the results. This was followed up by a phone call from the CNS team the following day- a mutual arrangement- as I needed time for it to sink in.
I am glad that you have been able to arrange some counselling through Macmillan and I hope this is helpful for you. In the meantime, don't forget that the Support Line is there if needed.
I understand that you have felt the need to keep it fairly quiet so far. It is hard to know what to do. I told work, family and close friends to begin with and then when I knew more I was more open. I felt the thing was that people would naturally have questions and until I had time to find out the answers and time to process it all I would wait. I can understand your husband feeling the way he does. It is hard on families to. If you feel he would benefit from some support then he is also welcome to use the Support Line or perhaps look at the family and friends forum. I will pop a link below in case it would help.
(+) Family and friends forum - Macmillan Online Community
I was diagnosed April 2022 after experiencing bleeding in the March. I had surgery 4 weeks after the bleed. That was followed by chemotherapy May-Aug and then 5 weeks of radiotherapy August and September. I now have clinic check ups every 12 weeks. If you click on my name it will take you to my profile and you can see the timings etc from there. You can do this on any user's name and it will show you their journey.
I hope this helps a bit. And fingers crossed that you get some answers soon. In the meantime we are here if we can be of any support to either of you.
Jane
