Treatment after a hysterectomy

Hello Ange19

Welcome to the Online Community and the Womb group.

I am sorry to hear of your diagnosis of womb cancer and hope that you are recovering well from the hysterectomy.

I had adjuvant treatment due to my post op pathology. I had 4 cycles of carboplatin and paclitaxel chemotherapy- which seems the usual chemo offered and that took place in 21 day cycles. So day 1 I was at the hospital having the chemo and that was followed by 20 days at home to recover. It then repeated 4 times. After chemo finished I had 25 sessions of external beam radiotherapy. If you click on my name, my profile will come up to show you my journey. 

I can understand your shock and confusion at being told that you need further treatment. I was not expecting to have anything further after the op as the cancer appeared contained. However due to the grade of cancer they could not be 100% sure that no stray cells had been left behind that could in time set up somewhere else and become cancerous. If there were any cells left after the surgery they would have been too small to see on a scan. It sounds like you are in a similar situation- they are pretty sure they removed it but because it had started to spread to a fallopian tube they want to give you the adjuvant treatment to give you the best chance to avoid the cancer returning.

I won't say that it was easy to go through chemo and then radiotherapy- but with support from family, friends and Macmillan it was doable. Once you get started the time does seem to go quicker than you expect. I did have side effects from the treatments but these were largely managed by medication and adjustments in doses. 

Looking back I am glad that I had the further treatment and it is easier to deal with any tiny cells that may have been left behind now- rather than cross your fingers and hope they don't set up elsewhere and then are harder to treat.

If there is anything else you want to ask about the treatments, then please do so. There are a lot of us on here who have had chemo and radiotherapy and will be happy to offer support. 

In the meantime if you feel talking things through would help, then please do give the Support Line a call. The details are at the end of this and they are lovely on there.

Jane

Hi Ange19, I had a hysterectomy in Jan 2022 and my histology revealed grade 1 stage 2. I was predicted grade 1 stage 1a but a few cells were found on top of my cervix and also extremely rare pre-cancerous “stics” found in both my Fallopian tubes. If undetected they would have led to cancer in my Fallopian tubes and ovaries which would have been likely to be high grade and may not have been treatable. As such, the cancer was gone, I was cancer free, but because the cancer had spread even just a little bit, and because I had the stics, radiotherapy and brachytherapy was advised as a precaution in case there was anything untoward lurking in my lymph system. It was described as precaution/belt and braces/an insurance policy. I was very upset about the thought of treatment and the time it would take, but I took the pragmatic approach and decided to do what was needed to give me the best chance. And I’ve not regretted it. I finished mid May 2022. 

Hello Ange19

If you click on my username, you can read my journey. I was in exactly this position a couple of years ago, may I ask what Grade of cancer and stage you have? 

I also echo what Jane2511 has wrote, my adjuvant therapy of chemo and Brachytherapy was to try prevent recurrence as they could not be 100% certain that any cells hadn't escaped through the bloodstream/ lymph, and as Jane2511 said these cells are too tiny to be picked up by any scan.

I was given a choice by my oncologist who asked me to think carefully as if there were NO cells left behind then they could potentially be 'over treating,' but if I didn't go through then one cell left behind could multiply and start several tumours elsewhere and then I would be incurable. This group helped me so much to enable myself make the right decision and I decided to give it everything and glad I did.

I was lucky enough that after six weeks of sick leave I decided to work my part time admin job from home, with much support from my employer. I worked around my chemo and appointments etc, was under no pressure but it also helped me ' escape' from the cancer journey for few hours each day when I did work and was good for my mental health. I am so grateful for this.

I had my last check up 2 weeks ago and all is normal. I can't thank the NHS enough, they have done me proud, I'm still here and I'm well and fit because of them all. 

I wish you well on your journey, please do keep us posted. Take care x

Hi Jane 

Thank you very much for your reply and insight to your treatment plan.  It does sound very much what they are offering me.

I did find out that because it has spread to my Fallopian tube, that it is stage 3 and grade 2, before my op it was classed as stage 1b and grade 2.  I am worried about the affect and damage the treatment does, especially the chemotherapy and because it is over a few months.  I know everyone is different and treatment will affect people differently, but what sort of side effects did you have and during the 21 days were you able to do anything normal?

I hope you are well now and send you best wishes.

Ange 

Hi Ange

You will likely have a chemotherapy consents appointment before the chemo starts. The oncologist will call you in and discuss your chemo regime with you and tell you in detail about any possible side effects. I found the appointment quite daunting as they have to tell you about every possible side effect so you can consent to the appointment- however if you take a look at the leaflets inside even a packet of paracetamol- there are many side effects listed but most people would not experience most of them. It's the same for chemo- yes there are some side effects and yes you are likely to get some but most can be managed with medication. 

The thought of chemo was really scary for me but in reality it was nothing as bad as I feared. Day1 I would go to the hospital around 8 and I would leave around 530. I didn't feel too bad on the hospital days and was well looked after. I used to find them tiring. The next few days would be the worst for me and I would usually spend a few days at home, relaxing on the sofa, sleeping on and off, watching tv etc. Wasn't up to a lot and tended to just go with the flow.

After the first week I would feel a lot better and could go for short walks, pop to the shops 5 minutes away and could potter around at home and in the garden. I would feel brighter and more like doing things.

For the next week I would be ok to have people visit, go out more but would be mindful of still getting plenty of rest as I would need treatment again the following week.

I found that the effects accumulated with each cycle and by the last cycle I was really tired.

Side effects for me hair loss (I did scalp cooling and kept some) nausea, upset stomach, fatigue, back pain. 

I was given medication that helped and they will give you a 24hour phone number to call and a booklet to write any symptoms etc in. They will also write your medication in here. 

One thing to be aware of is the risk of picking up any infections and that if you do, then you do need to contact them asap. There is a risk that an infection could become serious very quickly. For that reason alone I did not go out a lot during treatment and when I did I tended to do things locally with close friends and family and tried to avoid big groups of people. A bit like covid times really- reducing the risks of picking anything up. 

My advice would be to just go with the flow and pace yourself. Listen to what your body is telling you and rest when you can. The more you do that, I found that after the first few days I was able to do more in the next 2 weeks. If you do too much your body will tell you. 

Good Luck

Jane

Hi Jane

thanks a lot, that’s really useful and very helpful to me.  I am worried about the side effects, but am also worried about the effects the chemo will have on your body after the treatment is finished and of any permanent damage that may occur.  I don’t know if you have any insight to this.

Are you feeling well now and clear of everything?

Again, thank you very much for your prompt reply and information you have provided.

Take care

Ange

Hi Mad

Thank you very much for your reply, it is very helpful.

I was told it was stage 1b and grade 2, but now I believe it is stage 3 grade 2, stage 3 because it was found in my Fallopian tube!

What is Brachytherapy?  I have never heard that mentioned.  

I will have the treatment offered as it is too much of a risk not to have it.  I find it quite daunting, as I feel alright in myself and am going to put myself through something that will make me feel ill.  I am also worried about the side effects of the treatment and of any lasting effects to your body.  How were you during your treatment and afterwards?

I am pleased that you are fine now and clear of everything, it must have been so good to find that out.

Thank you again for replying to me.

Take care

Ange

Hi

Thanks for replying, and I am so pleased that you are now clear and feel fine.

I do find the idea of chemotherapy very daunting as it makes you feel Ill and possibly loose your hair, I am also worried of any effects that may last once it is finished.

Yes they said the same to me, about the belt and braces approach and that the treatment is to prevent any further C.

Can I ask, what is brachytherapy?

Thanks again and take care

Hello Ange

Brachytherapy is a type of internal radiotherapy. A small radioactive material similar to a tampon  is put into your body, vaginal canal Or into the area where the cancer used to be before having surgery. It doesn't hurt, you lie still for about 6 minutes and kills any cancer cells that may be present but too small to see on scans. Not every hospital offer this . I had high dose Brachytherapy, one visit per week over 3 weeks, so three sessions in all, I had no side effects, some patients have low dose over longer periods. Your consultant will discuss if any of this treatment is what is offered and explain why they think you will benefit.

As for chemotherapy, it's different for each and every one of us, it didn't make me ill and I was lucky I didn't end up in hospital with infections etc, I did feel nauseous and tired a lot, I also had to give one type a skip after 3 allergic reactions , the common chemo I know mostly  which is used for endometrial cancer is Paclitaxel and Carboplatin. I managed to continue working part time from home at my request to keep me occupied during my treatments. I also opted to use the Cold Cap Therapy and lost some hair but not all of it so it grew back quicker. Please do ask if you need a link to any of the above subjects.

Take care x

Hi

Thank you very much for the info.  It’s really useful to learn about the different treatments.  I am not sure what type of radiotherapy I will have.  Is the cold cap alright to use, did you have any problems with it?

thanks again

Ange