Ask The Expert: Cervical Cancer and Survivorship Web Chat - Now Closed

ASK THE EXPERT: CERVICAL CANCER AND SURVIVORSHIP WEB CHAT 

**TO TAKE PART IN OUR DISCUSSION AND POST YOUR COMMENTS YOU WILL NEED TO REGISTER**

Hello Everyone

Good afternoon

Thank you to all those who posted questions for our first web chat. Our panel of experts have now viewed your questions and come back with their responses.

The topic for this web chat is Cervical Cancer and Survivorship.

As a reminder, we were very kindly joined by our panel;

Lynn Holmes, Cancer Nurse Specialist
Dr Amanda Tristram, Gynae-oncologist
Susan Quilliam, Relationship Expert

To find out more about them, please visit http://www.jostrust.org.uk/support/ask-the-expert-web-chats.

The answers to your questions have been added after each individual post, so please do scroll through to see our panel's responses. I've also now unlocked the thread and I'll be around throughout the evening to discuss what it's like going through cervical cancer, the key issues faced during and after treatment and where to get help should you need it. So please do feel free to post about any of your concerns as I'm here to help!

Just as a reminder, for those of you who have been affected by cervical abnormalities rather than cervical cancer, we'll be holding a session soon to address your questions. In the meantime though, if you do have questions about screening or colposcopy, please do feel free to use our Ask The Expert Service here

I do hope you'll join me this evening to talk about the difficulties you have faced and also share anything that's helped you so that others may benefit.

Best wishes
Rebecca 

***Our panel's responses are without the benefit of medical notes or examination and so therefore Jo's Cervical Cancer Trust would always encourages you to seek appropriate professional medical advice or care for any situation or problem that you may have**

I had a lletz treatment done back in July. Doctor has confirmed that I'm going to have problems carrying when help is out there if we want another baby??

I had a radical hysterectomy 2 years ago. Early menopause means I have HRT patches which relieve any menopausal symptoms. However I have no sex drive at all, I dread my partner initiating sex as I get no pleasure. I have been to a sex therapist to be told i've lost my appetite for sex &  have been recommended a book to read! My partner feels rejected, I feel guilty. I also have a lot of anger about what has happened to me & how I was told nothing of these things I would have to deal with.  When I voice this I'm reminded of how lucky I am to be here which I know but then feel even more guilty for having feelings I can't help. 

Good afternoon,

I am 18 months post diagnosis for stage 2b cc. I have been in remission for a year, I thought I was over the worst, however lately I feel like I'm not coping very well I was 24 when I was diagnosed luckily I have 2 children, however I'm struggling to deal with never having a child again and my hormones are all over the place. I am not on hrt as I didn't think I needed it I will be going to see my gp and discussing options. What I need to know is, is it normal to feel like this 18 months on? I thought being in remission would make it all go away but it's just so difficult, I live in fear it will return and I'm still dealing with horrible side effects from chemo/radiation and brachytherapy. I know my question is hard to answer but any tips or advice would be gratefully received.

thanks,

Laura

Hi, I was diagnosed cc 1b2 in January I had a radical hysterectomy, lymph node dissection and my ovaries were preserved due to my age (29) in march. Since then I’ve had problems with pain on urination. However the symptoms which prompted me to go get a smear in the first place are back. Severe pain during sex, I’m constantly bloated and can barely eat more then a few mouthfuls and my back is in constant agony to the point I now take 30mg codeine every 4 hours during the day and 30mg amitryptiline at night, and the pain on urination is getting worse not better. My consultant and gp keep putting all this down to post operative pain. Should I be pushing for further tests or accepting that they are the experts and know what they are doing or do I go private for another opinion? I’m really starting to get scared the cancer is back.

I would like to know how  having LVSI 

affects the chance of reoccurance??

Doc at time ( dec 2012) said don't worry bout it but i have seen posts thst some ladies have had ' mop up  ' radio/ chemo.

I wS confident at the time MDT made the correct decision for no further treatment for me but i have a nag in my head as other ladies seem to have had to have more treatment??

 

My question is the same as callyswican - and I would like to say you are not alone, I am 9 years after a Radical Hysterectomy (at the time I was 33).  I had 3cm at the top of my vagina removed too, so I feel this has shortened alot, which makes intimacy uncomfortable.  There is nothing wrong internally they say I healed very well.  

I am exactly the same 9 years on!   I feel that I was fobbed off by the so called counsellors at the hospital I attended.  In the end I have just given up and have become celibate.  I am married and have been for 9 years (yes I underwent surgery a week after our wedding).  All I can say is I have a very understanding husband, but our relationship could obviously be better. 

I really don't know what to do.  I am no longer on HRT as I didn't want the side effects, unfortunately now I have Osteoporosis and Arthriris.

They say if you don't use it, you lose it, and I fear that is what has happened to me.  Any advice would be appreciated.  

Thanks

My question is about side effects of chemoradiation and brachy. I finished my treatment last October and was just starting to feel better when in the January I started with dreadful pains in my groin hip and down the leg[the left one only]. I feel as if I am being fobbed off sometimes so asked for a bone scan,the results were Osteoporosis in my lower spine[no suprise there] but hips and wrists were fine. Ive now waiting for an Mri which was ordered by my surgeon a few weeks ago as he could see that I was in terrible pain and discomfort. I would be grateful for any advice,Thank you Diagnosed with stage 2 b cc in July last year chemo 5 x5,radio x28 and brackyx 3

Hi Everyone

We've had a lady on Facebook ask a question that I thought I would add to the chat.

"My daughter had 2b and after treatment 3 month scan showed a little bit still there but they say this type of cancer can take longer to heal so another scan in 3 months. Is this quite common?"

 

Do any of you on the forum have these sorts of questions after your treatment?

Best wishes
Rebecca

 

 

Hi

I had treatment seven years ago and I used the dilators religiously for a long time. I was told that I would only need them for a certain amount of time and so I had got to a point where I was only using them every few weeks and this seemed to be fine. Well, I say fine, as fine as you can be when you've had this sort of treatment. Sex since finishing treatment has been a challenge to say the least with bleeding and lots of pain but I had hope that things would improve. I had a death in the family at the start of last year and it knocked me for 6 so I didn't use the dilators or try and feel like sex for a few months. Then when I went to my checkup, I thought everything was fine and the doc never mentioned anything being different. I then found out afterwards that I'd lost almost half of my vagina through sticking together after radio. Now sex is even more difficult and more painful. No one ever told me that I had to keep using them for the rest of my life. I feel really upset about it. Is there anything I can have done to open things up again (sorry, bit embarrassing!!). Also, I've never been offered help with these problems, my docs just seem to care that the cancer's gone and nothing else. They don't seem to want to know. I also struggle with my bowels and bladder. My boyfriend has been really patient and kind but it just feels like this is going to get worse as time goes on and it's hard to even feel like trying. I'd appreciate any help you could give me on what to do to make things better.

Thanks for your help
Honey xxxx

Diagnosed with 2b adeno 2007. 2 weeks Chemoradiation and 2 brachy.

I had a radical hysterectomy 9 months ago, I still have my ovaries and a lymph node dissection was also done.   I have luckily not had to have any other treatment.   I get very down and paranoid from time to time but because I didn't have to have chemo ect I also feel like I don't have the right to feel this way and a bit of a cancer fraud....I don't like to bother anyone but feel very isolated sometimes....what help is there out there as no emotional support was ever offered or discussed after my operation?   Also every so often my armpits and groin really ache as if I've over done it exercising but I know I haven't...is this normal? My other problem since the operation is terrible and painful wind....is this normal?? Thanks

 

Hi Lisa

Thank you for your question. Unfortunately, this particular discussion is centred around cervical cancer diagnosis, treatment and survivorship but please do submit your question to our Ask The Expert Service or give our helpline a call, they'll be happy to help you.

Hi Callyswican

Thanks for your question. Here is the response from our panel, I do hope that you find their comments helpful;

Lynn Holmes (CNS)
Hormones do play a role in sex drive so it is worthwhile asking your doctor to check if the HRT you are taking is the most appropriate to help or if another preparation is known to be better.  That said the psychological impact of having and being treated for cancer can be massive and play a major role in loss of desire. Sometimes when you have lost your sex drive you withdraw other forms of intimacy in the fear of it leading to sex, speak to your partner openly. Sex maybe off the menu at the moment but being close and intimate with your partner may reduce their feelings of rejection and improve how you feel.
I'm sorry your experience of seeing a sex therapist resulted in being recommended a book, ideally you (and your partner) should have been supported through a treatment program of several weeks.  This would have included individual/couple tasks to be completed at home and sessions with the therapist, this would also give you the opportunity to explore your feelings and find ways of managing them. If this is something you would consider revisiting ask your team if there is a specific PST service available locally or www.cosrt.org.uk have a list of therapist check before you see someone ring them and ask them what service they offer.

Susan Quilliam (Relationship Expert)
I am so sorry that sex therapy hasn't worked for you so far. But note that I say 'so far', because I would advise you to try counselling again. It's clear - and totally understandable - that you feel angry and guilty, and my bet is you also feel sad about the loss of your sex drive - so you need to find a counsellor who will take you seriously and give you time and space to let those emotions out.

My bet is that you, and your partner if he (or she, you don't make it clear) is willing, also need to explore together your feelings about your suffering over the last two years before the two of you can return to a good sex life. Finally, it'd be useful to see a specialist counsellor who also has the knowledge advise you on managing your menopausel symptoms and making sex more pleasurable for you.

Bottom line, please please do give therapy another try - there are good people out there; the College of Sexual and Relationship Therapists (www.cosrt.org.uk) will have a list of people in your local area. Don't be satisfied with simply being given a book - you deserve high level and useful support!

Hi Laura

Lynn Holmes (CNS)

Yes Laura, it is normal to feel like this 18 months on.  Lots of my patients feel exactly the same and often find the time period after treatment more distressing than during it.  At least then you had the safety net of your hospital team, it may feel as if you no longer have that but your Cancer Nurse Specialist should still be available for ongoing support. Jo’s Cervical Cancer Trust have support groups and Let’s Meet days where you can meet other women who understand how you feel.  There may be a survivorship/living with and after cancer services within your local area that you could access; there are courses on living well after cancer that you can access run by Penny Brohn - http://www.pennybrohncancercare.org/

Keep a record of your side effects, if you’ve not already been given one ask for the booklet produced from Macmillan ‘Managing the late effects of pelvic radiotherapy in women’ this gives information and advice. If the tips in this booklet don’t help then discuss your symptoms with your health care team they should be able to offer advice or refer you to other services that can help.  Also see the Pelvic Radiation Disease Association website http://www.prda.org.uk/ .

Hi MrsD1625

Dr Amanda Tristram (Gynae-Oncologist)
Without seeing you it is difficult to say what might be causing the symptoms.  It is natural to worry about the pain being due to the cancer coming back, but as your doctors have said, there are lots of other things it could be due to.  Options for investigation would include an MRI scan, examination under anaesthetic and cystoscopy (bladder examination).  If all these were negative, then it might be worth seeing a pain specialist.  In terms of a second opinion, often your consultant can refer you for this, without you having to pay privately.  I think it would be worth going back to see them and asking about these possibilities.  If you have a specialist nurse, it might be worth contacting them as well to explain your concerns and perhaps they could see the consultant with you.

Hi KAR47

Dr Amanda Tristram (Gynae-Oncologist)
LVSI does increase the chances of recurrence and it is one of the factors used to decide whether to give people radiotherapy after a radical hysterectomy for cervical cancer.  Other factors are the size of the tumour, how far through the cervix the tumour goes, whether the edges are free of disease and whether the lymph nodes are involved.  Usually when the edges or the lymph nodes are involved radiotherapy would be given.  It is more difficult to decide to give radiotherapy when this is not the case, but LVSI is present.  The limited evidence seems to be that radiotherapy reduces the number of cases where the cancer comes back, but does not improve overall survival.  This might be either due to the side effects of radiotherapy given to all the women, not just those where it will come back.  Or it may be because it is just as effective to give the radiotherapy just to the women when it comes back.  Decisions are therefore often made on an individual basis, taking all the factors into account, by the multidisciplinary team.  This would involve both the surgeons and the oncologists.  If you are still concerned you should speak to one of the team looking after you and ask them to explain the decision to you again.

Hi gcwestie

Lynn Holmes (CNS)
There are alternatives to taking HRT.  You could explore this with your team alternatively there is a lot of advice and help on the website http://www.menopausematters.co.uk/ .

It is said “use it or lose”, it but this can be reversed in a lot of cases.  As suggested in response to Callyswican’s post accessing psychosexual therapy and working through a treatment plan specific to your and your partner’s needs could help. It’s not an overnight fix, sometimes it’s very distressing and difficult but you could also have lots of fun moving forward sexually.

Susan Quilliam (Relationship Expert)
It's often very difficult to reclaim intimacy after having heavy-duty surgery, but it can be done with the right emotional support and therapeutic advice - I'm only sorry that it seems you didn't get this nine years ago.

But I don't think it's now too late and it should be possible to reclaim your desire and your capacity - though there are no quick fixes and frankly this isn't something you can do on your own. (Which is why, despite your previous bad experiences, I would advise you to find a good, specialist counsellor who won't simply give you bottom-line advice but will work with you actively to get your sex life back.)

Over time you can discover ways of getting pleasure that don't depend on your vagina and - given that you clearly have a loving marriage - to receive as well as give pleasure to your husband. Once you can do that, and have started to remember how good sex can be, then slowly you'll feel more motivated.

I also strongly suspect that you've never had a chance to express and work through the natural emotions of fury and grief that often come with the sort of medical history you've had - so a good therapist will be able to help you do that too; often when emotions are released, desire returns. The College of Sexual and Relationship Therapists (www.cosrt.org.uk) lists counsellors; keep going until you find one who can actively help you.

Hi laney6

Lynn Holmes (CNS)
Sometimes radiotherapy can cause problems with the bony pelvis, the MRI should be able to pick up if there are changes due to radiotherapy or other causes of your pain. If there is an obvious cause for you pain this will be managed by your medical team.

Other things that can be done to help with bone pain include appropriate pain killers, diet rich in calcium and vitamin D, referral to physiotherapy. A bone density scan is sometimes offered sometime after treatment if you have had an early menopause and medication to strengthen bones is often prescribed if necessary. Macmillan’s booklet on Bone Health may offer further help and suggestions.

Hi Sandra

Dr Amanda Tristram (Gynae-Oncologist)
It does happen that when a scan at three months shows some disease present that it is not on the scan another three months later.  Sometimes there is still disease there and so it is really important to have the scan.  If there is still cancer on the second scan, then a decision will need to be made about surgery.  Usually this will involve doing an examination under anaesthetic and biopsies.  This might be arranged at the same time as the repeat scan.  Your daughter should have contact details for a specialist nurse, so if she is still worried, she could contact her to check on what is planned.

Hi Honey1972

Lynn Holmes (CNS)
The evidence for dilator use (how often and for how long) varies, if you were having regular penetrative sex then you may not have needed your dilators.  That said let’s look at where you are today. I’m not sure if you are still on follow up or have been discharged so either speak to your surgeon or ask your GP to refer you back to see one.  Sometimes adhesions can be divided surgically but they would make that call.
Restarting dilator therapy may also help but be sure to use plenty of lubrication, if it is painful you could as for some local anaesthetic gel to reduce the pain.  Sometimes using localised oestrogen can be beneficial but you would need to discuss this with your doctors. Remember to take it slowly and start with the smallest cone.
Using lubrication and altering the position you have sex are a couple of things that may help but as I’ve said in previous posts seeking input from your CNS or a referral to psychosexual therapy could be the way forward for you and your partner.
Keep a record of your bowel and bladder symptoms, obtain a copy of Macmillan’s booklet on managing late effects of radiotherapy lots of tips in there and have a look at PRDA’s website (see Laura1989 response). If things don’t improve ask for a referral to appropriate services.