One-Year Check-Up

Cervical cancer post treatment and side effects
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Hi Ladies,

I had my one-year check-up last week. Quite a milestone! Results in a couple of weeks to confirm but my consultant was happy with how everything looked and felt, so fingers crossed that's a significant clinical (and emotional!) milestone crossed. 

Having said that there is now the possibility that I will need a bit more surgery, in the form of an oophorectomy (ovaries out). I have been getting symptoms of ovarian failure and I also have a constant pain in one particular area of my pelvis which sometimes is worse than at other times, and he thinks that this might also be caused by struggling ovaries. Further, I discovered a few years ago that I am in the highest risk group for breast cancer, and he said last week that with that in mind, he would have been a bit happier removing my ovaries when they did my original surgery last year, because it would lower my breast cancer risk. To be honest, with the type of cervical tumour I had, it's also not a bad idea for them to be removed, just to protect me a little bit more. Having said that, there is no rush and it is entirely my choice. He has sent a referral to the Breast Unit to get their opinion on it as well and I don't have to make up my mind for six months  (although obviously I can decide before that), so there's no sense of urgency to things. It's a very different feeling from the 'emergency' feeling that surrounds the rush of cancer surgery. I don't know how I feel about it at the moment. I think I'm slightly nervous about what the Breast Unit might say because eight years ago they offered me a double mastectomy as a preventative measure, which I turned down but then went on a health drive and up until a few months before I was diagnosed with cc, I was running 20-25 miles a week, as well as doing swimming, and I haven't had dairy for years. On the one hand I am worried about the loss and how that will impact on me, but on the other hand I have got time to think about it, so there is more of a feeling of choice about it, and the benefits (lower risk of cc recurrence, relief of ovarian failure symptoms, lower risk of breast cancer, impossible to get ovarian cancer) might outweigh the loss when it comes down to it - it might actually give me peace of mind. I don't know. We'll see. 

In a way, I can't believe it's now just over a year since I was diagnosed with cervical cancer. In one way it's gone really fast, but in another way when I think about how I was and how different I am now, it seems ages ago, and it is almost as if I can't really remember what I was like before I was diagnosed. So much is different in my life: I have ditched any aspects of my work that I didn't like and I am pursuing research that I have wanted to do for years (and loving it); my husband and I are closer than we were before I was diagnosed and we make sure that we always talk about things and not leave things unsaid; anything and anyone that wasn't ultimately a positive force in my life has gone because when I was faced with my own mortality, I got pretty ruthless about and possessive of my life! It is no exaggeration to say that everything is different, and although I am in no way 'over' having had cancer, I am getting on with my life and I deal with the distress and chaos of it in a much calmer and more considered way than I was able to a few months ago. I've stopped crying every time I see a new born baby and I am now physically able to be more active again. Like I said I guess, just getting on with life and wanting to make the most of it. Cancer or no cancer, none of us really know when the curtain will fall, so I just want to get as much as I can out of my life now, spend time with the people who matter and not worry about the things or people that don't. 

So, even though I am not on this forum as much as I was, I just wanted to pop in and give a little update. 

Annabel. x

 

 

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Hi Annabel,

 

It's so good to read your post and to hear that you are doing so well. What a difference a year makes hey! I'm 3 months down the road and already feel so much better than the 'diagnosis / treatment days'. So, it's good to let everyone know that things can improve with time.

 

With regards to removing your ovaries. You might remember that this was something I was really pissed off / worried about when my consultant told me to do at the same time as my hysterectomy. 3 months later I'm so glad he did. I now do not have to worry about ovarian cancer and like you, I had the adenocarcinoma type tumour, so having my ovaries removed lowers my risk of recurrence. Though I think because the time from diagnosis to treatment is quick and all a bit of a whirlwind I was just annoyed they were taking 'everything' and was so worried about early menopause. I was being a bit of a diva, ha ha.  I can say that I do not notice any difference with having my ovaries removed and did not have any menopausal symptoms. But that will be because I started HRT a week after surgery. Due to your breast cancer risk, should you have your ovaries out will you be able to take HRT?

 

Thanks again for posting, it's great to hear your positivity. You gave me so much advice and information through my journey which would have been difficult to find anywhere else! To that end, how is that book coming along? I'm sure everyone on Jo's will be putting their orders in. .

 

Take care, Tess xx

 

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Hi Annabel

thanks for posting a down the road update :-)

I found your update on ovaries or no ovaries interesting, i went with having mine removed and have been debating whether it was the right decision or not.  i didn't start my HRT until six weeks post surgery and so i suffered terribly with menopausal symptoms.  i have been on my hormones for a month now and things are settling down - my hair looks great i just have niggly hip joint pain.  Anyway reading your update has confirmed that i am glad that i went ahead and had them removed, like yourself and Tes said it is a bit of a whirlwind when you need to decide and almost no real time to contemplate it all. 

And it was comforting to read someone else crying at seeing a newborn, i have been doing that and being envious of pregnant women - which is ridculous as i was done with having my babies.

All the best

Pat

x

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Hi annabel

its so goood to hear how well you are doing.

I am approaching my year diagnosis too and can completely agree with what you say. I have most definitely changed (for the better) and nothing really stresses me now. I just think back to that awful waiting and diagnosis and think NOTHING can ever be that bad aagain .

I still have niggles from surgery and early menopause ( had my ovaries removed at the same time - my choice as i just wanted anything providing a risk OUT) but I am grateful to be here to smell that coffee and roses so try not to dwell on it too much.

Life does slowly return to a realistic pace and like you my marriage is solid as ever despite some difficult times over the last year - bless him he has been fab most of the time.

Jos has been a great source of information for us and we recently attended  'Lets meet'  - hubby was a bit reluctant but wanted to support me.

I am pleased to say he really enjoyed the day and found he got a deeper understanding of my feelings and issues as well as support for himself.

Often when i was looking on this forum as I was going through diagnosis surgery etc i did maybe leave him in the dark to my fears..... I plan to suggest a husband/ partner section .... I am sure others would feel the benefit too.

Thanks again annabel - many of your posts and pm's kept me sane at an insane time!!

All you lovely ladies out there deserve good health and happiness

Incidently today as i fell i am moving onward and upward i attended a look good feel better afternoon at local hospital. I had heard of it earlier in my diagnosis but was not really read to admit i needed a feel good day :(

Well worth it as was fun and infoermative, bonus that  i also came home with a bagful of quality goodies from big brands in beauty products

CHECK IT OUT LADIES X

Kath x

 

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Hi Annabel,

Thank you for posting this message. It's always useful to see things like this from someone who is a bit ahead of you in the timeline - an idea of what's to come I guess! I'm 3 months post diagnosis now (adenocarcinoma too but 1a1) and am struggling to get to grips with the new me. I was lucky as nothing has changed significantly for me physically (as it was such an early stage, a cone was thought to be sufficient - we'll see if that was the right choice at my next check up!) but mentally I just don't feel like 'me' anymore and its hard to put your finger on what exactly is different...but something is! 

Good luck with your results, and your surgery if you decide to go through with it :)

Soph x

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Hi Ladies, 

Thank you for all this. Yes, I think I am erring on the side of having the oophorectomy, but we'll see. At the moment the menopausal symptoms are not great and seem to be getting worse. I'm going to see how they are for a couple of months because frankly, that on its own might be enough to help me with my decision. If my ovaries are failing, there is a greater chance of complications from that than there would be if I'd had a natural (rather than surgically triggered) menopause, so for that reason alone I'd be better off without them if that is what's happening. And as a few of you have pointed out, the lowered risk of recurrence and of breast cancer is a huge aspect when it comes to peace of mind, with the ability to tick off ovarian cancer as a possibility a bit of an added reassurance really. It's good to hear from people who have had the oophorectomy and are pleased that they did. Thank you. 

I should be able to take oestrogen-only HRT even with my risk of breast cancer because I wouldn't be increasing my 'normal' amount of oestrogen, I'd just be replacing what would normally be there if I had healthy functioning ovaries. This should be ok, but we'll see what the Breast Unit say. 

I was sorry not to be able to make it to Let's Meet this year, Kath. I'm so glad that you enjoyed it (and your hubby!) and got lots from it. I hope to be able to make next year's one - it would be great to put faces to some of the names on here. 

Oh yes, I cried loads at the sight of newborn babies - I started to become quite a liability in the supermarket to be honest; I resorted to online shopping in the end. I had finished having my family as well, and I think there is a perception with some people that if you weren't intending to have any more children, then what's the problem. But that rather misses the point I think, and devalues the uterus as something which only matters when it is impregnated. The loss of fertility is a huge thing, whether you were intending to have more children or not, and it seems perfectly understandable to me that the grief associated with that would be triggered at the sight of babies and/or pregnant women. So Pat, you are not silly!! :-) 

Soph, it will have changed you. I'm really glad that you didn't have to have extreme surgery, but you've still been through a cancer diagnosis and having to have treatment for cancer, and that is life-changing stuff. It's bound to change you. It might be too soon for you to be able to quantify those changes at this stage - like you say, you can't put your finger on it just yet - but in time you'll be able to look back and see the ways in which you've changed. We change all the time, of course, with different things that happen in life, but I think that a cancer diagnosis gives the impression of massive change because the enormity of the event accelerates the change (if that makes sense). Good luck with your next check-up. xx

And Tes, if ever there's a time when it's ok to be a diva, I reckon a cancer diagnosis is it!! ;-) I'm so glad you feel it was the right decieion for you and that you're doing well three months later - you have done amazingly well. Yep, book on its way in due course. I'll let you know!

Much love to you all, 

Annabel. xxx

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Hi Annabel,

 

It's great to hear from you and see how you're doing. You were always such an informative and inspiring forum buddy through my cancer diagnosis and surgery, so thank you for that. it looks like your further surgery may solve a few things should you decide on it, so good luck with that.

 

I've never wanted children, but with Christmas coming up I can't help getting really upset that I will never be able to make a special Christmas for anyone, and the future seems quite long without that. I don't know where this has come from, given my child free aspirations! I guess it's part and parcel of having the choice removed from me now. My partner doesn't have any family at all, so we're only left with my side which aren't much fun, or the two of us. At 30 this seems very sad to me and I'm really suprised by how strongly I feel about it.

 

xx

 

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Hi Jo, 

I think you've hit the nail on the head - it's that the choice has been taken away from you. As you may remember, I have a daughter and had no intentions of having any more children, but as soon as I got diagnosed what I suddenly wanted more than anything in the world was a baby. A few months ago I went through a protracted phase of regretting only having had one. I think it's all part of the grief of the loss, and I don't really feel like that anymore. It's interesting what you say about the size of the rest of your family - I've got no one on my side and my husband's parents live 250 miles away and he has one brother - that's it! Pretty small. That worries me sometimes, and that did get tangled up in the grief a few months ago, but the fact of the matter is that's the size of the family whether I'd had cancer or not. Your feelings may change as you move through your grief, which of course does not take anything away from the strength of your feelings now, but I guess I'm trying to reassure you that what you're feeling now may not be the 'end result', if you see what I mean. 

Further to this though, what I would say is make a special Christmas for YOU!! :-) Pull out all the stops, make it spectacular - why not?! You deserve it! Christmas is one of those things that society gives us unrealistic ideals about. This used to really stress me out and I worried a lot that unless we were having a big family Christmas then there was something wrong with us. But actually, an awful lot of people with big families are really tolerating Christmas - at best! I don't worry any more - I banned turkey from the house, I make a chocolate cake instead of a Christmas cake and we basically do what we want. I used to find Christmas stressful and really hard, but now I'm more relaxed than I am at a lot of other points in the year. Make it special for YOU, Jo - either that or come to my house, but don't expect turkey. ;-) 

xxx

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Hi,

my friend had to have a hysterectomy and is childless. Her and her hubbie go away to spas from christmas eve for 3 nights and get spoilt rotten!! So spoil yourselves rotten. Make it a really romantic, happy time. We have a big Christmas with hubbies side of family when a few of them I can hardly bear to be in the same room as.... Then I'm envious of my friend lol! Xxx

This disease takes away many of our choices, it is cruel. So choose to make Christmas special for you. Enjoy!

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Ah thank you Annabel and Dons! It's so good to know I'm not alone in these feelings and it is part of the process of coming to terms with what's happened to us.

I very much like the idea of spoling ourselves for a few days every year!! Before cancer I was actually quite happy in the thought that I didn't have to split time between families etc and that we could be quite selfish with our plans. So deep down I know that's fine by me, it's just the cancer monkey rearing it's head and lurking in strange places!

And you're right, I always get an idea of Christmas in my head as this lovely family time when in reality it's all a bit of a nightmare trying to please everyone.

xx

 

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Hi ladies,

 
I just wanted to add to the baby conversation. Before I was diagnosed I wasn't really sure if I'd have children because at 42 there was a good chance I'd left it too late anyway. But there was still a chance! Cancer takes this chance / choice away from us. So I think we are all really normal in our feelings about this whether we have children already, wanted them, didn't want them or just not sure.  I have 3 nephews and 4 nieces so am going to concentrate on being the 'cool' auntie, ha ha. But it does make me sad too, so Jo I know where you are coming from. Big hugs to you all.  Xxx