Stage 1B2 - Chemoradiation or hysterectomy

Hi Eire and welcome to our group.

I can understand you’re feeling a bit lost having had 2 different recommended treatment pathways. I’m not sure which country you’re  in now, but are being told there is an option to have the radical hysterectomy OR chemoradiation at this point?

Usually in the UK we don’t have a choice to make in treatment like this as the team will make the decision based on factors like tumour size and staging, following internationally recognised guidelines. 

I have gone through chemoradiation as my stage of 2b made a hysterectomy impossible but there are ladies in the group who had a radical hysterectomy and then had chemoradiation, so I hope they'll come along to share their stories. I can’t recall if we’ve had anyone having a successful radical hysterectomy after chemoradiation in this group. 

I had surgery after chemoradiation, when my team attempted a radical hysterectomy but unfortunately it failed due to the damage caused by the radiation-it had stuck the organs in my pelvis together and so it wasn’t possible to separate my womb from my bladder, and this was only discovered when I was on the operating table.  The surgery had to be abandoned. This resulted in much more extensive and life changing surgery, so there are risks in attempting a hysterectomy after chemoradiation which you would need to be aware of. Chemoradiation is easier after surgery than surgery is after chemoradiation from my experience.

Personally, I’ve always followed and trusted the recommendations from my team, and haven’t been faced with different options. Do you have an option which you might prefer?

Sarah xx

Hi SarahH21 , thank you for sharing your experience. It sounds like a tough experience. I wasn't aware it would fuse the organs together. May I ask what made you/the team attempt radical hysterectomy post-chemoradiation?

I was first diagnosed privately but am looking at treatment in Ireland, where I live and work. This means chemoradiation is the path. And having thought about it more in these past days, I understand surgery (in my case) would come with a lot of space of complications. So now I'm getting my head around what chemoradiation is and how to best prep my body and mind for the journey I'm on.

E xx

Hi Eire 

My cancer recurred and was discovered 9 months after chemoradiation, to which I did have a complete response.  As it was small at 11mm my surgeon thought a radical hysterectomy could be successful in removing it. 

Unfortunately my scans did not pick up on the radiation damage(I had 32 sessions). There’s always a chance that radiotherapy can damage the organs in the area treated, and it would have been dangerous to try and separate in particular my womb from my bladder. My colon also showed signs of radiation damage, although I had no bowel issues after my treatment had finished.

So now I’ve had more extensive surgery to remove everything in my pelvis. 

It wouldn’t be usual practice in the UK to attempt a radical hysterectomy after chemoradiation other than in the case of a local recurrence to my knowledge. It’s not something you hear about unless someone has had it for recurrence. 

There’s  lots of experience in the group of the chemoradiation regime, so please feel free to ask us anything about it and we’ll do our best to help based on our experiences.

Sarah xx

Hi Eire,

I am just butting in here because I have had unusual treatment here in Italy where I live (I'm a British citizen living in Italy). 

Long story short,  I was diagnosed with cervical cancer and although I was told it was small and had not spread (according to CT and MRI) I wasn't given a stage until after my radical hysterectomy. I was then staged at 3C1 as it had spread into a lymph node which was removed along with many others during the surgery. My tumour had been tiny, it was 1.5 cm but the lymph node involvement meant I needed chemoradiation afterwards. 

I have finished all the treatment now, and I have my next check ups in September. 

While I was doing my treatment I met a lot of women who were having chemoradiotherapy before surgery to shrink the tumour which were all larger than mine. It seems to be fairly common practice here, although another woman I met  had had first chemoradiation and then surgery and was back in hospital with a fistula, so like Sarah said I think there can be a lot more complications doing the chemorad first and then the surgery.

Like Sarah, I was given no choice really, they only strongly recommended everything they did and I'm glad for it now as (hopefully) I am sitting here with no remaining disease.

All treatment plans will be developed to give you the absolute best chance of being cancer free in the future.

I hope this helps,

Let us know how you're getting on,

Ciao from sunny Italy!

Lulabell

Ciao Lulabell,

I spent a year in Italy in my early 20s, I hope it is as lovely as I remember it to be!

Thank you for sharing your story. I was diagnosed in Portugal (privately). My tumour is 3.5cm with no sign of spreading (yet!), which brings it to the grey area of surgery/no-surgery. The main reason for my team here in Ireland recommending chemoradiation is that they don't believe they'll have enough clear margin due the placement of the tumour and that I'd need radiation post surgery. That's their "if this, then that" approach.

I'll likely go with the chemoradiation route as I don't particularly like the idea of close margins and potential post-surgery issues that could bring. 

Currently waiting to get my PET-CT scan date and then will meet with the specialists to discuss the chemoratiation. The waiting time is so incredibly difficult.

E xx

Hi Eire 

Your tumour size is only marginally smaller than mine which was 3.8cm at initial diagnosis and I was stage 2b, so I can understand why the recommendation is chemoradiation.

I have a support group for ladies who have had the total pelvic exenteration surgery I had, and there are 3 of us who had attempted hysterectomies after chemorads who went on to require the exenteration because it wasn’t successful. This is obviously much bigger surgery with life changing outcomes.

If they are not sure of being able to get good margins, that’s another reason to favour chemorads. Clear margins are really important and as they have said you would likely need radiation after a hysterectomy anyway, it would seem to be prudent to go straight to chemorads.

This could very successfully treat the tumour and leave you with no evidence of disease without the need to have any surgery. My doctors don’t use the words “cancer free” as they cannot be certain there are no residual cancer cells(which wouldn’t show up on scans). The most they will commit to is no evidence of disease, which I have now had twice. 

The waiting is incredibly difficult so I hope you’ll have your petscan and results soon.

Sarah xx

Hi  

Just wanted to make a small point that brachytherapy is not always once a week for four weeks although I appreciate this might have been your experience.

Brachytherapy depends on the type of equipment at your particular hospital amongst other things. For example, if I had been able to have brachytherapy it would have been as an in patient admission, after chemoradiation was completed, and would have involved being in the brachytherapy suite continually (on my back in bed) for 21 hours with the internal radiotherapy being delivered in intervals during that time. A general anaesthetic would have only been administered for the rod insertion.

Just making the point that not all brachytherapy is the same so that Eire is aware that there are different ways of delivering the treatment and she would be advised of her particular hospital’s procedures should she be having this. 

Sarah xx

Thank you for sharing.

Hi BabyDragon, hope you had a great time in Ireland

The wait is definitely the hardest right now. And it's starting to hit me mentally again. Good thing I'm speaking to a councellor today! Good to know that the chemo is low dose and will (hopefully) not cause hairloss. I have natural curls so wonder what chemo might to do them...

I'm seeking out a third opinion to ensure I've done my checks, as I didn't when I first was told I had HPV (last June). And I do regret that now as this intruder has probably been around for a good few years and could have been discovered earlier.

E x

That's a great addition, SarahH21. I understand brachytherapy will be tailored to the individual case. I spoke with my oncologist and she said it was likely that I'd have it but that would be discussed in more detail once I meet with the radiotherapist.

E xx