Hello everyone.
Just joined after being diagnosed last week.
I'd had abdominal bloating and pain and after scans, a 15cm mass was found on my right ovary. It looked suspicious so it was surgically removed 6 weeks ago (they also removed the FT, omentum and pelvic wall lining). Surgeon was confident it was a Borderline Ovarian Tumour. During the operation a scraping of my womb was taken, just in case.
Walked into the hospital to get my results confident it was just a BOT and I could move forward with my life, but they found grade 1 endometrioid adenocarcinoma cells in the ovarian mass, plus in my womb. The doctor called this stage 3 and said it likely spread from my womb to my ovary, or (less likely) may be synchronous primary cancers of the womb + ovary (which would make it 2 x stage 1s).
Now I am scheduled to have a hysterectomy next week (laparotomy again) followed by chemotherapy because the ovarian mass ruptured before they removed it.
Having a *really* hard time coming to terms with all of this. Nobody was expecting it, including the doctors. I thought I was getting my life back and now I am losing my fertility, my hormones and facing another major op + chemo all at once. It's suffocating, especially if it transpires to be 2 x stage 1 grade 1s. Scared of the operation, the surgical menopause, the lack of HRT and the chemo.
I don't have any children.
Any advice or hope gratefully received.
Hi
Welcome to the womb group.
I am sorry to hear of your diagnosis of cancer and I remember what a worrying time it was when I had my own diagnosis back in 2022.
I remember it still feeling a bit of a shock to hear the word cancer- even though I was expecting it. it is natural that you are feeling like it is hard to come to terms with after expecting a different diagnosis. It is good that you do not have to wait too long for your surgery.
When a cancer spreads the cancer cells from the original site end up going to the new site. So a cancer starting in the womb and moving to the ovary would be classified as womb cancer and that seems to be what they are suggesting may have happened. That is why the cells in the ovary were endometroid rather than ovarian. It would then as they have said be a stage 3. There can sometimes be 2 cancers in different places but as they have said this is less likely.
Whether it is a stage 3 endometrial or whether you have had 2 cancers in separate places- the surgery would still be the same- a hysterectomy- a hysterectomy is the normal first line treatment for endometrial cancer (where it is medically possible) In a hysterectomy for endometrial cancer the ovaries are normally removed at the same time.
My surgery was keyhole and for me it was straightforward. I had little pain and was in hospital for 1 night. Although it is a big thing for us to have the surgery- and for yourself after only recently having surgery- it can help to remember that for the surgeons it is normally a very routine and safe surgery that they perform several times a week.
My cancer was a stage 1, grade 3 and I did have to go through chemo. I can understand your fears. For me once I started it, it was better than I thought it would be- yes it was challenging at times but it was doable. When I did have side effects, on the whole they could be managed with medication. I had carboplatin and paclitaxel and that seems to be the most common first line chemo for gynae cancers. Mine was done in a 21 day cycle- 1 day in hospital and then 20 days at home to recover. I kept most of my hair as I did scalp cooling.
I can understand that it may feel hard to come to terms with the loss of fertility and if it would help to talk to someone please do give the Support Line a call. Although endometrial cancer is more common in ladies post menopause, there have still been several ladies on here who are of a younger age.
Many ladies - do worry about HRT and menopausal symptoms. Although it is not routinely recommended, it can in some cases be an option in some forms.
My advice would be to focus on the hysterectomy first and give yourself time to recover. Post op results came back for me at around 3 1/2 weeks and it is these results that will confirm a stage and grade.
I hope this helps a bit, if there is anything you want to ask about or need, then please do ask.
Jane
Final stage and grade are normally confirmed post op. Before surgery it is a provisional stage and grade.
With endometrial cancer stage 1 means contained in the womb. Stage 2 is where there are some cancer cells in the cervix. Stage 3 would include any cancer cells reaching the ovaries- but also anywhere within the pelvis. Stage 4 is where there is disease outside the pelvis.
Grade is also important as it can indicate how the cancer may behave. There are also other genetic/molecular information that is important. (eg; hormone positive) So for me I was stage 1 but had an aggressive grade 3 type.
So a provisional stage 3 - whilst important- on its own is not the whole picture. Stage 3 is still very treatable. There have been many ladies on here during my time that have had successful treatment at stage 3.
Although for most ladies the first signs of something wrong is post menopausal bleeding- for some ladies there are little or no symptoms.
It is worth asking about keyhole surgery, although there may be some reasons why they would prefer to do open surgery and I wonder if it is connected to your previous surgery.
For me chemo was at 6 weeks post op but I did have to be checked over to make sure I was fully healed and well enough to go ahead.
I do understand about the HRT. It is something to talk about in the future perhaps once the whole picture is clearer.
Jane
I used to make a list of questions to take in with me and go through them one by one.
Grade 1 is the lowest grade so that is positive.
The biopsy shows a lot of information but it is more detailed and confirmed post op. Things like MMR status etc can be important. Also the type of endometrial cancer can be important also things like LVSI. Basically the full picture should be known post op.
If the cancer has started in the womb and spread to the ovary then it will be the same endometrial cancer details. If it is a separate cancer then things could be different.
Your ovarian tissue would have been sent off to histology post op along with anything else removed during that surgery.
Although there are unknowns still in your case- if they were separate cancers then the chemo would likely be recommended due to the ovarian mass rupturing. If the cancer is a stage 3 endometrial cancer- then chemo would likely be recommended.
So from what you have posted- the treatment will still be the surgery with follow up chemo and the post op results will give further clarification.
Good luck tomorrow and don't be afraid to ask lots of questions.
