Womb cancer diagnosis age 39

Hi Amy

Welcome to the Womb group.

I am sorry to hear that you have had a diagnosis of womb cancer and understand what a worrying time it is.

The MRI is basically to stage the cancer and see exactly where it is and then this helps decide on the best possible treatment plan. I would expect the MRI results to go along with your other results to a multidisciplinary team meeting within the next couple of weeks- maybe sooner. After that it is likely that they will be able to advise on a treatment plan. 

For most ladies, where it is medically possible a hysterectomy is the first line treatment. However there can occasionally be other treatment offered where preserving fertility is important to the woman. This would depend on different factors- but the stage and grade are important. It is normally only a possibility for a grade 1 cancer that is stage 1a. (where the cancer is confined to the womb and has not grown more than 50% into the muscle. 

If the treatment is possible it is normally a mirena coil and would involve active monitoring, including repeat biopsies to make sure it is working. I do not want to give you false hope but make you aware that sometimes it can be an option. This would be something to discuss with your consultant. 

If the hormonal treatment is not an option then most ladies are offered a hysterectomy and mine was done via keyhole in 2022. It was straightforward, I had little pain, went home the next day and recovered well. After the surgery everything that is removed is sent to pathology. This will give a final stage and grade and it is this that they use to determine whether further treatment is needed. For some ladies a hysterectomy is enough. Others may be offered chemotherapy or radiotherapy. I had both. 

I was older than you when I had my diagnosis and already a Mum and I know that the diagnosis must be particularly hard when you had hoped to have a family. The link below takes you to some info that may help. I found it useful to have all the information before meeting with the consultant so I knew what was possible and what to ask about- that was important to me. We do have the Support Line available from 8am-8pm daily and it can sometimes help to talk things through with someone who is neutral.

Fertility and cancer | Macmillan Cancer Support

This link takes you to the Womb cancer booklet that many ladies- including myself have found helpful. 

Womb cancer booklet | Macmillan Cancer Support

I hope this helps a bit. I wish you well for your MRI tomorrow and we are here when you need us. If there is anything you want to ask about, there are many lovely ladies on here who will want to offer you support.

Jane

Sorry to hear about your diagnosis, especially as you're so young.  I can imagine how upset you are at the possibility of a hysterectomy. Best wishes for your ongoing treatment.

H 

Hi Jane, I  read that there is also something called: 'hysteroscopic resection' too that may be offered to women who want to preserve their fertility (for early stage cancer only) which is a surgical procedure which removes any lesions/margins of the womb lining by hysteroscopy before fitting the mirena coil. Apparently, if it's offered it can be more successful than just the mirena alone.

Yes I have heard of it and it has been around for quite a few years now. I don't have personal experience of it and not come across anyone on here who has had it as a treatment for endometrial cancer. 

I wonder why it is not offered more routinely. I suppose for those who can not have the hysterectomy for medical reasons- it would still involve potentially the issues with anaesthetic. 

I suppose its more invasive as involves surgery and healing, and that perhaps the mirena is tolerated better/ less risks. I am not sure on the general guidelines but no harm in anyone asking whether it is an option for them. I wonder also how having surgery on the endometrium might affect a pregnancy. But as I say- its not something I know about, but thanks for mentioning. 

Thank you 

Hi Jane, with regard to the anaesthetic, women can have either regional or local. There are two different types apparently and it's not as invasive as say having the entire lining removed like ablation - and can leave the endometrium more or less intact, as some women have gone on to have babies this way. It is odd that it's not offered that much for younger women though. 

Hi Amy, I am sad to hear that you have this hidden Womb Cancer why I say hidden is that I feel that Womb Cancer does not have as much media exposure as Ovarian Cancer, Breast Cancer, Bowel Cancer,  Prostate Cancer and sometimes Skin Cancer even though Womb Cancer is just as important if not more so due to the hidden symptoms as well as women generally being unable to look out for any symptoms as Womb Cancer is not as publicly advertised as the other women's Cancer's end of my rant and into a bit of advice I was giving my 28 year old daughter. 

When Alysha was 23/ 24 years old Alysha started to become unwell with heavy bleeding sever cramps and prolonged periods with massive clots she was told not to worry as it was due to her Polycystic Ovaries and her Endometriosis plus IBS fortunately I kept going with her to our GP and by nearly a year I wasn't convinced and told Alysha to demand to go for a Scan and X-ray, when having the scan the radiologist said she had to speak with another colleague she then came back in and informed Alysha she was putting her scan through as urgent as she had a massive abscess on her left Ovaries and Tube to cut a long story short good new her histology report came back negative to Cancer but at 24 years old she had lost a Tube and Ovary she had Polycystic Ovaries now down to one Ovary and having Endometriosis both leaving the added difficulty in getting pregnant which has been worrying her so I had said to contact the MP for an appointment to find out about her eggs to be harvest and stored for the future so perhaps being in the position you you could talk to your Gynaecologist - Oncologist or you GP Doctor about you having the right or eligibility in maintaining your fertility in this way through eggs  harvesting and storing in regards to future pregnancies.

My moto is if you don't ask you either don't know or don't get so if you decide on that type of maintaining your fertility it might be available.