Newly diagnosed and feeling out of my depth

Hello

Welcome to the Womb group.

I am sorry to hear of your diagnosis of endometrial cancer and understand that it can feel a very overwhelming time. 

I already had a child when I was diagnosed in 2022 and I can understand that it must be difficult to be told that you need a hysterectomy. I remember that when I had my diagnosis that you can feel helpless and it can feel out of control. For the doctors it is routine but for us it is massive. 

No one can make you have any treatment that you are not happy about, they can only advise you of their recommendations and make sure that you have all the information to make an informed choice. It is your body and your choice. I have put a link to the Macmillan Womb booklet at the end of this and I would recommend, in your own time to have a look at it to see whether having the information helps. I know for me it helped to make a list of my worries and questions, each time I was having to make treatment decisions, and to ask the doctor 1 by 1 all of them. Sometimes in the appointments it could feel like the doctors are talking about what they feel is important to you rather than listening to what you are actually asking and worrying about. I was lucky with mine that they were supportive but I did have to sometimes take back the control in the appointments. 

I was fine with having the surgery- I just wanted the cancer out , however I asked lots of questions before my chemo and also radiotherapy. Things like what would happen if I did or did not have the treatment, What were the side effects etc. For me having the information made it feel more under control. 

Sometimes hormonal treatment may be offered where a cancer is a grade 1 and a stage 1a but this is not suitable for everyone. It can sometimes be offered to ladies who can not yet have a hysterectomy for medical reasons. However hormonal treatment may bring side effects for some ladies. 

Sometimes the hormones can buy some time to get the cancer under some sort of control where there is a need to preserve fertility. 

A hysterectomy is the normal first line treatment. My hysterectomy was in April 2022 and it was more straightforward than I expected. I was in hospital for 1 night and I had little pain. It was done via keyhole and I recovered quickly. 

You should not feel any guilt and you are not being selfish. You have had a diagnosis of cancer and the treatment they are suggesting is not what you really want. You are facing the loss of fertility which is a big thing for us ladies. This is all bound to make you feel that everything is out of control and that is going to affect your mental health. 

Well done for arranging some therapy to talk this through however I would agree that 1 session may just be the beginning of seeking help. 

Can I suggest that you give the Support Line a call and talk to one of the nurses. They are there from 8am-8pm daily. They can also have a look to see if there is any support available in your local area with regard to the cancer. 

I am sorry that you have been through DV and SA and I understand why the diagnosis has brought up feeling of things being out of control. There have been other ladies on here who found it the same. 

I will also pop a few links here in case you need them.

0808 808 00 00 Macmillan Support Line

Urgent support - Every Mind Matters - NHS

Call for support and information | Helplines | Mind

Shout: The UK's free, confidential, 24/7 mental health text service | Shout 85258

Samaritans | Every life lost to suicide is a tragedy | Here to listen

Womb cancer booklet | Macmillan Cancer Support

Fertility and cancer | Macmillan Cancer Support

I know that this is a lot of information and do not feel you need to look at it all- its just here if you feel you need to and in one place. 

I hope this helps a bit. If there is anything you want to ask about or need, then please do ask.

Jane

You have stated that you don't want a mirena coil as you had issues with it in the past. What were those issues? Some women do have hormone therapy and it works and they can have a child after the treatment if it's successful.

Maybe the last fitting you had wasn't up to scratch - as sometimes it's not fitted well and has to be redone. Apart from that, you don't say what stage/grade of cancer you have but I assume it must be early stage for them to offer you hormone therapy, which is good. As Jane says, no one can make you have any treatment you don't want - it's your body, so talk it all through with Mc Millan Nurses perhaps to clarify your thoughts. As it would appear to be early stage, you do have a window of opportunity to get things straight in your mind before moving forward. Best wishes.

Hi Jane, Just to say that my worst fear of hysterectomy for me personally isn't even the pain - it's the other more subtle things that can be insidious, like infection, blood clots - or even later effects such as prolapse of organs. I have asthma and a bad bout of coughing once caused a prolapse/cystocele, so I would be wary of having surgery due to issues like that. Even constipation can cause worries over the wound not healing properly, so do have any advice about these issues?

Hi I had experienced severe cramping and echo heavier bleeding and lower back pain with it. 

It appears to be an early stage at 1b but the offering of hormones didn't really feel like an option as whilst mentioning it they were like you're delaying the inevitable and it most likely won't work which makes me feel my only options are do nothing or have the radical hysterectomy. 

I have tried talking to my CNS about it all but don't feel heard or understood 

Thank you so much for your reassurance and understanding. I really appreciate it!

I feel like I have no options as the day that they broke the news, they wanted to book it in and I'm like hold up my world has crashed down i need time and even then it was we will ring you end of the week which a 3 days later! 

I had another appointment a week later with a different consultant and the CNS Sat in and it felt like a tag team tbh and the Fertility dr was dismissive too and was like I can adopt or foster which i know but there wasn't any real attempt to try and use hormones as an option. I also have no further appointments as they have provisionally booked a date but have said to let them know if i change my mind via the secretary.

I think my trauma is making it difficult to accept especially as I clung onto the dream and hope of having my own family. I still remember how I would look at the nursery furniture in the argos catalogue as a kid and making lists of names etc.

Thank you for the links I will take time to look and speak to the nurses xx

Hi LolaBear

I understand that it is a big operation and there are lots of different aspects. 

I have been on here for around 3 years now and infection is something that does not seem to come up very often around the surgery- particularly the key hole surgery. Where people have discussed infections it tends to be more around their chemotherapy treatment which can make them more prone to having infections. 

After my surgery I was given clear guidelines on what to look out for around infections- redness, soreness, warmth around the incision sites and to monitor temperature and I was given a 24 hour number to call if I had anything concerning. On my first day at home I was phoned by my CNS to check on me. 

At my hospital I was encouraged to get up and move around within a couple of hours of surgery to be mobile at home. I had 30 days worth of anticoagulant injections to self administer into my tummy and also given advice about the signs of blood clots to look out for. 

I have asthma too and it did not cause any issues. I also caught covid during my treatment and the coughing did not cause any issues. 

With prolapse my understanding is that this is something that can happen to ladies whether or not they have had a hysterectomy. My surgeon explained that where supportive ligaments are cut during the surgery, they do in someway secure everything in place again. I can't remember exactly what was said as I was coming around from the surgery still. 

I was concerned about constipation being an issue - due to the anaesthetic and any pain relief- I was advised to use stool softeners and I did for about a week and had no issues. Worry about bowels does seem to come up on here a fair bit- but it does normally seem to resolve fairly quickly. 

For me my prime concern was to get rid of the cancer and although hormone treatments can for some ladies work for a while in keeping the cancer at bay- I just wanted to be sure it was gone. I understand it can be different for people who have not yet had children. 

From my understanding ladies who have higher BMI or coexisting medical issues would be more likely to have the complications. For most ladies it does seem the safest option. 

With hormone treatment there can be risks and side effects. And I don't think that anything they can offer in terms of treatment is without risk and its about finding the safest and most appropriate treatment that ladies need and are happy with. 

My choice was surgery first and I found the surgery was the easiest part of my treatment. I was not offered hormone treatment and if I had I would still have gone with the surgery. My post surgical pathology came back showing my cancer was a high grade one and I did not know that before it was done. Before surgery it was just provisional stage and grade so for that reason I feel I made the right decision for me. My post surgery results also showed evidence of lymphatic and vascular invasion (LVSI). None of this was picked up before surgery and would not have been if I had hormonal treatment- until the cancer had spread further. 

It has to always be a personal choice for the woman involved and my only advice would to make sure that they have all the information available so it is an informed choice. 

Jane

I have had conversations with many women who say that the hormone treatment did work but it's in the hands of fate really as we're all individuals.

There are studies which suggest many women do go on to have children this way but often have hysterectomy after they've had kids. It obviously varies.

From my personal experience, it has worked well. I am post-menopausal so fertility issues don't apply to me now (already had kids) but I was deemed high-risk for surgery, so I was happy to give it a go. I only had minimal pain and discomfort for a short time after insertion - and at the last check-up was told that my womb lining had dropped from 14mm - to just 4mm. Also, that on biopsy, it showed dramatic 'treatment effects' so my team were pleased with the progress and confident that the disease is actually reversing....

I am also trying to lose weight, so that my options might be wider later, but we'll see.

Perhaps you might have a chat with a Mc Millan Nurse or your GP? Good  wishes.

Hi Jane, thank you for your thorough response, it's really helpful.

In my case though I have another issue - I had a cardiac arrest aged 18 (when I was a lot fitter!) under general anaesthetic, so my team are reluctant for me to go head with surgery at this time. In my medical records it states it as a kind of allergic reaction but no one really knows for sure what happened back then. It was a long time ago and I know things have improved a lot since but I am still scared of GA.

This is mainly why (apart from my weight) that I have been offered the hormone treatment, which is going quite well. I know I probably can't stay on it forever and wouldn't want to frankly but it's bought me some time to consider things.

My team have also discussed the possibiliy of brachytherapy as a 'primary treatment' - which can only be offered if you have early stage disease in this way apparently. It would involve 3-4 sessions of HD brachytherapy over several weeks - and the HD would remove the risk of blood clots because they are shorter sessions. I visited the new RT unit at the hospital and was told that for early-stage disease where the patient can't have surgery it can offer a viable alternative to surgery - but I will consider that further down the line.

Meanwhile, the disease seems to be regressing well but losing weight is hard!

Thanks once again - your commitment on here to help others is a great comfort. 

I'm aware it's different for each individual as we're so different so our experiences etc won't be the same.

Unfortunately despite being on hormones, my hyperplasia which was without atypia  became cancerous which is why they are pushing more for surgery and not hormonal therapy as not good chances of regression to have a baby as the womb needs to be in a good state and stopping the progesterone can cause the cancer to grow again

Hi, I understand what you say but how long were you on the hormone therapy? Some people need to be on it for 9-12 months to make any real difference. I hope you find the right solution for your particular situation and good wishes.