im exactly the same. I'm a researcher as well and looked everything up! It helped me to ask the right questions. So when I was told I had cancer, my appoibtment was with the doctor who performed the hysteroscopy. Then when the scan results were ready I met with the Gynae Consultant who was going to do the hysterectomy. I then met with him again after the op for the histology results. Then met with Oncologist a few times to discuss chemo, radio etc. It was at this stage thst Covid hit so literally my 3 monthly checks were always telephone appointments. I had 3 of those and then finally had a face to face in August this year. He said my checks are niw 6 mo they but there are no scans provided as he doesn't deem them necessary! Hope this helps a bit. Please keep us posted. I found talking on here was a grrear help. x
Hi barney bear...unfortunately I had the lymphedema before my radiation treatment, I've had it about 18 years which ws a result of an operation...trauma to my leg.
I can only really comment om my case personally but it did make mine worse...I have no idea at all why or how it happens but must all be connected with lymph glands...
Ii was staged at stage 2 as cancer had invaded 50% so was given 25 external pelvic targeted radiation and 2 internal (brachytherapy)
I'm actually sitting waiting to see my consultant at moment so I'll ak her if she can explain it to me ...if she had time its busy here
On Monday In the post I received a letter from Cervical Smear Dept. Stating that the result had come back and there was no cancer detected-I was really happy but also annoyed as I knew I had had a number of different elements to my testing and this impersonal test like letter did not even mention them... I got on the phone to advise that they were giving false hopes to people as I was awaiting results for endometrial and ovarian cancer (and based on the fact that the nurse has told me I had cancerous cells I was not expecting good news) and someone who is less aware may have been overjoyed and then a few days later was told a few days later that they had cancer. Anyway it was lost on deaf ears.
That same Monday in the afternoonI received a call from the hospital booking me in to see a Gynaecologist Oncologist Professor next Tuesday she would not give me any details of my results-I knew it was serious as it was the top man in our main hospital... my mind went into overdrive and I imagined all sorts!
The next day I received a call from another hospital to sybthat they had discussed me in their MDT that morning and to schedule me an appointment to discuss surgery with their Consultant Gynaecologist-I asked for more information and she said that my results had shown PRE-Cancerous cells (Atypia Hyperplasia) and that the treatment recommended was a full hysterectomy. I went from fear to joy in that call. Having said that if my cells were cancerous and had not spread outside my uterus then I would still be facing the same treatment!
I am worried about the op for different reasons as I have read about the effects on your body and health after the removal of your ovaries (despite me being post menopausal).
I am also diagnosed with Stage 2 Grade 2 endometrial cancer with extension to cervix. I will have external n internal radiotherapy after the new year.
Before the hysterectomy, I was not given MRI and no lymph node sampling was performed during the hysterectomy. While waiting to meet the radiooncologist, I am getting more scared now that the staging is incorrect. How could they know it was not Stage 3C if the lymph nodes were not checked?
My gynaecologist ordered a full abdomen to thorax ct scan before my surgery as she said that would show them if the cancer had spread to any other parts of my body apart from the obvious cervix/ovaries/womb etc
I actually did ask my gynaecology/oncologist when i saw her at my last appointment in november as she was actually the surgeon who did my hysterectomy so thought she'd be the best person to ask...i asked if she had removed any lymph nodes as i have read a lot of ladies have had them removed during their surgery but she said no she didnt need to...i have to be totally honest i didnt really follow or fully understand all the medical terms etc plus she does have an accent and talks very quickly so i have to try and listen very hard... she basically told me as the cancer had only invaded 50% it wasnt necessary to remove any ? i dont know if that sounds right to you or not ?
She also gives me a full internal exam each follow up visit to so she has also moved my 3 monthly follow ups to every 4 months now as it was a year since my op in august this year and she was quite happy with everything looking healthy for now
I assumed i would have another ct scan or mri after all my treatment was finished to make sure it had been sucessful but she said they dont like to subject a patient to unecessary scans as obviously thats unecesseary exposure to more radation unless i was experiencing severe pain or other symptoms so i was perfectly ok with that reason.as i think ive had enough radiation to last me a lifetime (i hope)
I will ask her to explain it to me again in detail so that i can understand properly and include the details in my copy of the letter she sends to my gp and myself
I really to feel for you i totally understand how worrying and extremely stressful this thing is to deal with and its the not knowing and uncertainty thats possibly the worst part
Truly hope you get the answers your looking for to put your mind at ease a little xxx
Very happy for you that you had your treatments completed and your doctor is happy with your progress.
I will ask my doctor or the specialist nurse on Thursday when I have my post op check up. I guess if the invasion is not deep, the lymph nodes are less likely to be affected.
Really sorry im just replying now but had a full on few weeks looking for a house as weve sold ours and the housing market in this country is just crazy at the moment
Only downside I've had is a slight prolapse bladder which isn't painful or anything but is a damn nuisance but oncologist has referred me to a clinic to see if itll help which will most likely be exercised or the like, plus I still suffer from shocking windy pains and disturbed bowels since my OP...its very annoying and uncomfortable some days but if that's the worst things I will suffer then I can sure deal with that.
Just pray for all of us that there's no reoccurrances xxx
Thank you Lesleya. I know how crazy the housing market is. I tried to find a house for my father in law near us but no luck.
May I ask once again that when you said you were diagnosed stage 2, was it only after the hysterectomy or was it found after the pre op CT scan? And what was the grade? Mine is grade 2, which was upgraded from 1 only after the hysterectomy. I was very disappointed when the doctor told me the news.
I hope you do not mind me asking you so many questions. I have been reading lots of posts on this chatgroup. You are the only person who has very similar conditions to mine.
Lets hope we all stay strong and well in the coming months and years.
