Hysterectomy and radiotherapy - what to expect? (pregnancy mentioned)

Hi girls

So I am still waiting for my treatment plan to be finalised - I am 29 years old, and stage 2B Squamous Cell Carcinoma with 3.6x3x2cm tumour, with very slight spread to tissue between my uterus and cervix. Unsure of any lymph involvement yet because I have not had Petscan.

This is made all the more complicated by the fact that I am also 17.5 weeks pregnant and wish to continue with the pregnancy until 28 weeks. Doctor said I can do chemo whilst pregnant, but they are pushing me to terminate. I am having the Petscan on Tuesday and meeting with the doctors on Wednesday to discuss results. If there is lymph involvement, they told me that they will not be comfortable letting me continue with the pregnancy. It is all very difficult.

I have been given two options for treatment, as follows. I think that treatment here in Australia is different because I notice that a lot of stage 2’s on this site have just chemo/rad without surgery? Am I right in saying that?

My two options from the oncologists are:

  1. No lymph involvement - continue pregnancy with chemo, then immediate hysterectomy after c-section, followed by more Chemo (so no radiation with this one)
  2. Lymph involvement - strongly encourage to end pregnancy, have hysterectomy and then have chemo and radiation

I am no worried about the chemo at all but I am absolutely terrified of radiation!!! I am also really scared of hysterectomy. I am hoping that if I do need radiation, that it will not be much because I am having a hysterectomy to remove the tumour - again, I am not sure if I have that right? If anyone could shed some light if they have any experience with this?

My questions are:

  1. Will sex be ok after my hysterectomy? I am worried that it will never be the same again, and like most ladies, it is so important to me and my partner.
  2. The doctors said they will leave my ovaries (and transposition them if I need radiation so they do not get damaged) - even with my ovaries left, I know it sounds silly but I am worried about weight gain?
  3. Is there a chance that my ovaries will just shut down because my uterus etc is not there?
  4. Do your ovaries keep producing eggs even though there is no uterus?
  5. Does radiation cause nerve damage, or other long term damage, and what are these damages?

Any information you could share would be great, thanks so much girls.

All my love xx

Hi starlight. 

I'm so sorry that you are in this position. I hope you get good news from your pet scan.  

I think the reason that ladies with stage 2 don't have a hysterectomy is because their tumour is larger than 4cm. I'm not sure but I think I've read that.  

I can't answer re the hysterectomy because I haven't had one. I'm sure you can still have a healthy sex life afterwards though.

I don't know much about ovaries either I'm afraid but I always thought your eggs were already in them and they release them once a month rather than produce them. 

The only thing I can really help you with is the radiotherapy as I have experienced that. I didn't find it too bad at all. The actual treatment you don't feel anything.  You may or may not get side effects,  i got very few and what I did get was pretty mild and soon passed. 

There is a possibility that radiotherapy will cause long term damage but there is a possibility that it won't either.  The main thing, in my opinion,  is that it gets rid of the tumour.  

I hope Wednesday comes quickly for you so you can get some answers x 

Hi starlight :-)

I'm so sorry you find yourself here but I'd like to try to answer some of your questions for you :-)

1 Sex will be different after your hysterectomy, but that does not mean to say that it will definitely be less satisfying for either you or your partner. As far as he is concerned he probably feels your cervix as a ridge that rubs on the sensitive part of his penis. That won't be there any more but it shouldn't stop him from enjoying sex. As far as you are concerned you will probably notice the absence of the weight of your uterus which provides a certain inertia during sex. So it will be different certainly, but it should still be perfectly enjoyable for both of you. I had over half of my vagina surgically removed and then the remainder treated with radiotherapy, which removes its elasticity, so not much fun for us but you two should be just fine :-)

2 Weight-gain really should not be an issue unless you change your habits significantly. If it is something that you are worried about that suggests you are someone who takes care of your physique, possibly with a healthy diet and a decent amount of exercise. If I have assessed you correctly and you continue to take good care of yourself then weight is unlikely to be an issue.

3 There is a chance that your ovaries will shut themselves down in the abscence of your uterus but this is only likely several years down the line. Not something to worry yourself about just now :-)

4 As Philleepa said, your eggs were inside your ovaries when you were born :-)

5 Radiation can cause some long-term problems but not by any means always. I don't think that nerve damage is on the list but some bowel issues perhaps. I have had no noticeable side effects since my treatment over four years ago although I am now discovering that after 8 and more CT scans these now trigger a bit of diarrhoea. Not a serious issue when compared with another 30 or more years of life :-)

Do raise ALL these issues with your team. They should be able to provide you with solid facts :-)

Be lucky :-)
Tivoli

 

Hi girls

 

I feel a bit silly about the eggs - the oncologist said "you already have your eggs, you don't keep producing them" he was so nice about it but I felt a bit silly that I don't even understand my own reproduction system. 

 

Phileepa - I think I just qualify for the hysterectomy because the tumour is 3.6cm so just under 4cm. Also, some of my paperwork says stage 2B and other paperwork says Stage 1B1 - I asked yesterday and the oncologist told me that another oncologist on the team thinks it is 1B1 because the very small spread in to the tissue is questionable as it could just be inflammation from my wedge biopsy a couple of weeks ago. 

Phileepa and Tivoli - thank you so much for all the honest info. It is so beneficial hearing it from women who have actually been through it and not just the oncology team. 

I am really worried about the sex side of things but me and my partner are talking about changes etc and I am sure it will take a bit of time for us to get used to.

As I am pregnant at the moment and delaying treatment (just having chemo and then surgery once baby is born) - the doctor said no more sex anyway for the rest of the pregnancy so we can't enjoy the last "normal" sex before the hysto. I know I shouldn't say "normal" because what is that, but I am a little depressed about sex. This is really personal but I am worried that I won't orgasm properly because I understand orgasms to be your uterus vibrating. 

I am hoping that they don't have to remove too much of the vagina, because the tumour is growing upwards.

I know it seems silly to just be so consumed by the sex, and not just worry about getting rid of cancer, but sex is going to be different, so I just want to be prepared for that. My partner and I are both young (only 29) so I don't want us to "miss out". He is so supportive and tells me not to even worry about the sex right now, and that it will be fine and we will make it work etc. 

Sorry I am just ranting now. 

 

I should be just extremely grateful because I received my results on Wednesday and I have no lymph node involvement - so I am able to continue with my pregnancy (18 weeks atm) til 33 weeks while receiving chemo the whole time. It is completely safe for the baby. I am so grateful that I have the opportunity to have the baby because obviously after this I will never be able to have one again, naturally. 

 

Thanks girls. I have been waiting to get the energy to write on here all day. I started chemo yesterday and it has wiped me out.

 

All my love to all

 x

 

No, it's not silly to be 'consumed by the sex' But try not to worry, you can still easily reach orgasm without a uterus :-)

Be lucky :-)
Tivoli