Rad hyst and ovaries

Hi girls, I think I'm right in that they do not have to remove your Ovaries with a rad hyst? In what circumtances would they insist your ovaries are also removed? Does it depend on the type of tumour you have? Thanks, Tess xx 

Hey Tess,

I kept my ovaries and had a rad hyst. They thought they would have to remove them if I had the adeno type cancer but it turned out mine was squamous cell. I don’t know for certain if it’s always the case that one type means ovaries removed though.

I think it can also depend how close you are to the menopause. I’m 30 so that was a factor in leaving them in.

Are you going to have a rad hyst? If so I hope it goes well :slight_smile:

Xx

Hi Jo, thanks for the reply. I'm still not sure what type of surgery I'm having yet but think it's probably going to be the rad hyst. I saw the consultant last week and he talked me through the trach and hyst so I coud think about both. He is awaiting my full results from the other hospital and also sent me for a CT scan and blood test. He did say that if I had a rad hyst then my ovaries would be removed too. I think it's because I have the Andeo tumour and this is more agressive. So if that's the case I'm guessing I actually won't be able to have a trach as that would mean I keep my ovaries?!  I'm seeing him again on Wednesday so will write down all my questions and he said he will have a clearer idea then for my treatment. So maybe I'm getting ahead of myself a bit. Also, I'm 42 so maybe that's why.  But I really don't want to deal with surgery, loss of fertility and menopause! It's one thing after another isn't it....   How are you doing post op Jo.  I read some f your posts. Are feeling any better than you were? Xxx

Hello,

Ah that’s a bit frustrating to not have the full picture just yet. Fingers crossed your next appointment will be a bit more fruitful! In my vague knowledge the adeno type is a bit more unpredictable so they tend to remove ovaries too to prevent anything occurring there. I’m sure someone (Annabel!) will be able to give you the actual medical reasons.

It’s hard not to get ahead of yourself, especially if you’ve been given different surgical options to consider before you know for sure which you can have. A bit of a puzzling time I imagine! I reckon the best thing to do is exactly what you are doing…go prepared with questions and ask for advice on here too. If you have a Macmillan nurse they’re great at answering the things you forget to ask.

I’m doing ok thank you :slight_smile: I’ve had a really slow recovery and got hung up on being expected to do things by a certain date. Once I’d decided to let go of the guidelines and just take things at my own pace I’ve done a lot better. Mentally things are good too :slight_smile: xx

Hi Jo, I'm glad you're feeling better. It's a journey isn't it! I think your right, everybody will recover at their own pace and guidelines are exactly that, just a guide. I will have to try and remember that myself! I hope you are enjoying the weekend. Xx 

Hi Tes, 

Protocol says that ovaries should be left in if the rad. hyst. is being performed on a woman who is not near to normal menopausal age. This is to try and preserve as much normal hormonal activity as possible, for as long as possible going up to 'normal' menopause. Generally they class 45 as the age boundary. So, if you're under 45 they'll leave them in, if you're 45 or over, they'll take them out. Obviously you're under 45, but as you're not that far from the usual boundary, I imagine they think it suitable to remove them. 

Even though we think of our reproductive system working all as one thing, actually the ovaries work pretty separately from the rest. Further to this, cervical cancer is pretty predictable in its behaviour, compared to some other cancers, and tends to spread to the same places in the same order in women. Ovaries are quite far down the list, by which I mean it tends to invade a lot of other places (uterus, vagina, lymphatic system) before it even considers the ovaries, so actually your ovaries are not at as much risk as we can feel they are when we first get diagnosed. 

Having said all this, the type of tumour is a consideration to some extent when deciding whether or not to remove the ovaries with a radical hysterectomy. Adenocarcinoma is a less predictable type of tumour, partly because of the way it grows and partly because of the way in which it forms in the first place, and you really do have to cover *all* of the bases with it clinically. I am surprised they are giving you the option of a trachelectomy when you have 1B1 adenocarcinoma. I'm assuming they've said they will remove lymph nodes as well, regardless of which op you have?

I had adenocarcinoma and I kept my ovaries because I was 38 at the time. However, seven months later and my ovaries have now failed and I am in the menopause anyway. There is a 50% chance of this happening with anyone who has any kind of hysterectomy because the ovaries get half of their blood supply from a major artery that runs through the middle of the uterus. Part of me now wishes they'd removed my ovaries at the time and just got it over and done with.

I know what you mean about having to deal with so much at one time, and that you feel you could probably do without the menopause as well, but on the other hand if you have a radical hysterectomy, lymph node removal and an oophorectomy, then at least you'll be able to feel confident that your future has been protected and that as much as possible has been done to prevent recurrence. It is a lot to deal with, you're right, but cancer and all the surrounding 'stuff' is a massive thing anyway. It's worth bearing in mind as well that not everyone gets horrendous menopausal symptoms. I get some headaches, hot flushes and a strange 'draining' feeling sometimes in my head, which usually results in me completely forgetting whatever it was that I was talking about at the time, but as yet I haven't had the whole waking-up-in-the-middle-of-the-night-drenched-in-sweat thing that some people get. A friend of mine had the menopause after her radical hysterectomy and didn't even realise until six months later when she had to have her ovaries removed and didn't experience the menopause! The few hot flushes after her rad. hyst. that she'd put down to her hormones settling down post-op, had actually been her menopause. So, everyone is different and there is no way of knowing what level of menopausal symptoms you'd have, so it's really best to base the decision on what is clinically best for you, and what is most likely to give you the best outcome on a long-term basis. 

Keep us posted. 

Love, Annabel. x

Hi Annabel,

Ok, that makes more sense now (you are soooo helpful and brilliant at explaining things) Smile.  I guess because of my age he is thinking he may as well remove my ovaries. It would have been nice to keep something!  I don't think that the trach will be an option when I go back on Wednesday.  So I've kind of prepared myself for that Cry.  Yes my lymph nodes will also be removed. 

So, the things that Im really worried about now are:

  • spread to the lymph nodes
  • the possibility of also having to go through radio and chemo (my worse fear)
  • possible lymphedema.... for life!
  • menopause (get old, sweaty and fat, etc)

My list is bigger than the above so really could be here all day, lol.  Do you know whether you can take HRT when the tumour is adenocarcinoma?  And should you take it for osteoporosis prevention? I have also read you could be more at risk of breast cancer if you take it? I guess that HRT will be my next reaserch item!

I think it has just dawned on me that this is just the start of my journey.  Originally my thinking was, whip the cancer out with surgery, recover for 6 weeks, go on holiday somewhere lovely, back to work, done!  But it's not going to be like that is it......

Tess xx

 

 

Hi Tess

I thought you might be interested to hear the perspective of someone who had their ovaries removed. I was 48 at time of diagnosis, but still offered the choice of whether or not I wished to keep them. Even though I knew there was no higher likelyhood of developing ovarian cancer because I'd had cc, I just thought it was one less thing to worry about!

I was told by my consultant that I would start HRT immediately after surgery, and at the time it was recommended that you're offered HRT up until the age of natural menopause, which is 51 -my current age!

Three years on from my surgery I am lighter, fitter and healthier that pre-surgery. This is down to a concerted effort on my part to make sure i remain as healthy as I possibly can for the future, but being on HRT doesn't mean you WILL gain weight. healthy eating and exercise still have an effect!

Over the years I have been a member of Jo's I have seen many women suffer with menopausal symptoms as they were reluctant to take HRT due to the slightly raised chance of developing breast cancer and there is a lot of ongoing debate about the safety of HRT. Current advice seems to suggest that for women who are under 51 - there is more to be gained by being on it than not. The original study which led to the increased concerns re: breast cancer included a lot of women who were well over the age of natural menopause.

All that said, HRT clearly does not suit everyone and sometimes you have to experiement with different brands, doses and types. Speaking personally it has been marvellous for me and I dread the day I'm told i'll have to stop taking it. I also had my first mammogram last year and everything was fine!

I wish you all the best with your journey, I just wanted to let you know there is light at the end of the tunnel!

Take care, lots of love

Louise xx

Hi Louise,

Thanks for your message. I hope my post didn't offend anyone by mentioning the weight gain. I think my point is that having actual cancer and going through the treatment to get the all clear it is not the end. There are going to be so many other things to consider along the way to initial treatment and afterwards.

I think I will take HRT if I can, as you said, it has other benefits which need to be considered. I guess I will need to ask the doctor lots of questions. My sister got breast cancer a couple of years ago. She was only 44 at the time. So obviously the breast cancer link is a worry, so it's understanding how much of a risk it would be.

Thanks for your reply. It made me feel better. xx

 

Hi Tess, 

Ok, so let's take each of your points in turn:

  • spread to the lymph nodes: This is extremely unlikely to have happened. Even though they are removing your groinal lymph nodes, they are not expecting them to test positive for cancer; they will be expecting them to test negative, but they have to remove them just to be extra extra safe. The protocol has been developed from decades of charting which treatments produce the most successful outcomes and longest life expectancy, so this is why they remove your lymph nodes. It also effectively blocks off the path from your cervical area to your lymphatic system, keeping you extra safe for the future. If they were expecting your lymph nodes to test positive, they wouldn't be considering gynae surgery. 
  • the possibility of also having to go through radio and chemo (my worse fear): I totally 'get' you being frightened of this; I am too. However, they would not be doing the surgery if they were expecting you to be needing chemoradiation. Unlike with some other types of cancer (such as breast cancer), they tend to do either surgery or chemoradiationwith cervical cancer, depending on your stage. Anything up to 2a, it tends to be a radical hysterectomy (obviously a trachalectomy and cone biopsy in some cases of v. early stage, but generally speaking...) and then anything more advanced than 2a tends to be chemoradiation. They do this because over many years they discovered that the survival rates for women who'd had one or the other, rather than both, were much higher. So, whilst I completely understand the fear, which is in part I think because of the uncertainty until you get the histology results and know for sure, hold on very strongly to the fact that if they expected you to need chemoradiation, they simply wouldn't be bothering doing the surgery - simple as that. 
  • possible lymphedema.... for life! Again, completely understandable fear, and unfortunately there simply is no way of knowing because some people get it, some people don't. However, keeping within your BMI weight, eating healthily and taking exercise are all things that are known to reduce the risk of lymphedema developing, so those are things that you can do to help you feel a bit more in control of it. I know several people who have had lymph nodes removed because of various cancers and only one of these has any resulting effects of this, which is  a small numb patch on her left leg; she doesn't have any swelling or anything like that. 
  • menopause (get old, sweaty and fat, etc): As I said earlier, people experience different levels of menopausal symptoms, so there's no way of knowing if you'll hardly notice, be constantly dripping with sweat or be somewhere in between! I think Louise's message above demonstrates very well that the menopause doesn't mean you have to go out and buy a quilted jacket and start making doilies for the church fete - unless you want to of course ;-) I caught myself singing along to Enrique Iglesius on the radio the other day - a *sure* sign of menopause in my opinion! ;-)  
  • HRT: You will need to speak to your gynaecologist about this. You're right that you are less likely to be able to take HRT with the tumour being adenocarcinoma, but as far as I understand it there are certain features of the tumour that they have to take into account, so it's not as simple as a blanket 'ban' on it. Like you say, you have a family history of breast cancer as well, so that's something they'll need to take into consideration (you could get the test done to see if you carry the gene - that could help you decide), but having said that there are lots of different types of HRT these days and there could be ways around these things. As you say, there are lots of benefits of HRT beyond symptom-relief, as well.

Yes, you're right, this is just the start of your journey. The nature of treatment for cervical cancer (esp. radical hysterectomy) means that you can go from beginning to end in a very short space of time, and I think the temptation can be to think that once it's over, it's over. It's not like that for most people though. In the space of 6 weeks, I'd had an abnormal smear, a colposcopy, a biopsy, a cancer diagnosis, a radical hysterecomy and the all clear!! Whoa! I felt like I'd been picked up by a whirlwind, thrown in every direction in the air and then thrown back to the ground. Exactly what had gone on didn't really begin to hit me until a couple of months after it was all over. At the moment, I wouldn't try and look too far ahead - you've got a lot to deal with, so it can be helpful to just focus on one day at a time, and just accept however you're feeling. It's often said on here that emotionally cc is a roller coaster, and it absolutely is. Not only can you go from one extreme to the other from one day to the next, you can go through several extremes in one day, so just try and take things as manageable as you can and ditch any extra stress that isn't absolutely necessary. It's a massive thing to go through and it will change you in ways that you can't envisage at the moment - that's neither a positive nor a negative thing, it's just part of going through any big event in life - and it might take you a while to catch up with yourself! As I say though, for the moment, it's a good idea just to concentrate on one day at a time. 

Anyway, good luck with your meeting tomorrow. Let us know how it goes. 

Much love, Annabel. x

Annabel
I just read your last post. And thankyou! The first 3 points are what are driving me crazy… It’s nice to have some positivity about them!!

Em xx

Hi Annabel,

Thanks again for your reply and support. I wish the doctors could explain things as clearly as you do. Though it's probably my fault as my mind went blank at the last meeting.

So, my date is finally booked for 11th July. Rad Hyst including ovaries and lymph nodes. I did ask the doctor about HRT. He said they would give me tablets when I'm in the hospital and for when I get home.  He will  then make me a follow up appointment with a specialist to see how I'm getting on with them and whether I need to change the type etc. But he said I could definitely have HRT.

With regards to the ovaries, he said if I had the other tumour type he would leave them in.  As it's andenocarcinoma he wants to take them out so that there is no reoccurrence.

I'm glad I have the date now. But feeling a bit nervous and teary. 

Em - I will be in the day after you. I will be thinking of you so let me know how you get on.  Goood luck lovely!

Tess xx

 

PS, Annabel, if you were singing to Enrique Iglesius I think that might be ok.  You are still 'down with the kids'.  If it was Julio Iglesius then errr, you might be in trouble  Wink

Good luck to you too Tes!
it’s all getting abit scary now isn’t it! but hopefully we’ll be looking back at it all in a couple of months and coming on here relaying all the advice Annabel has given us to other ladies!!

All the best and let me know how you get on!! I’ll be thinking of you too xx

I’m 25 and I love a good sing a long to Enrique!! Much better since he got rid of that mole too :slight_smile: xxx

Ok, as I am on the right side of the Julio/Enrique boundary, and Enrique is ok with the 20-somethings, it seems safe to say that actually I am exceptionally cool Wink

I think it helps to have the date set in your mind, as you feel a bit less 'in the middle of nowhere', then. It's an odd feeling though and I remember feeling both impatient and wanting it to be over with, and feeling like everything was happening too fast and I needed it all to slow down so that I could think! 

Your emotions will be all over the place, so just take things one day at a time and if you don't get everything done in a day that you expect to, just let yourself off the hook - it's fine. I found it helped to focus on getting things ready for my bag and making all the practical arrangements. I also made a visitors timetable to both make sure I had visitors at every visiting time, and to ensure that I didn't have everyone descending on me at the same time! It worked really well. 

Lots of love, Annabel. x