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Anyone had cancer of cervix and gone on to concieve? Any advice please...

10 replies

daisycat01 · 12/02/2007 14:56

A close friend of mine has stage 1b cancer of the cervix. She is due to have her cervix removed and probably her lymph glands. As she is only 26, and has 1 child, her fertility is a huge issue. Her consultant, Mr Crawford, is going to offer her a trachelectomy (removal of cervix and lymph glands), she can then hopefully go on to have a baby by c section. She is still wondering about removing her lymph glands, as they may be healthy. She could also just have more knife surgery, however, 75% of the cervix needs to go.
Does anyone have any experience of this, can anyone offer any advice for her? Thanks.

OP posts:
fredip71 · 12/02/2007 15:21

I didn't have quite the same experience as your friend. Hers sounds really nasty. After I had the dodgy cells removed, I had a baby (2 years after), but I still have the cervix (God knows what's going in there at the mo as I said in the other thread).
I really don't know about the lymph glands, has she sought a second opinion on her chances of conceiving?

daisycat01 · 12/02/2007 15:58

Did you have the Leep procedure? She has had pre-cancerous cells removed, and the cone was sent for a biopsy and then discovered to be cancerous. She was told that the knife would leave scars which could lead to the cervix failing in later pregancies. The op she is being offered removes the cervix and then they sew up the bottom of the womb leaving a hole for a period and then she can still, hopefully, concieve. She hasnt had a second opinion, I think that op is basically the only way of treating the cancer and maintaining her fertility.

OP posts:
CocoLoco · 12/02/2007 16:15

Yes - I had a cone biopsy for CIN3 but it turned out there was an hidden cancer - it was just stage 1b (literally by 1mm) so although I was strongly advised to have further surgery (radical hysterectomy, then when I wouldn't agree to that radical trachelectomy was discussed) in the end I had no further treatment (did have MRI scans which showed lymph nodes probably unaffected). I went on to have my DD 2 years later.

I was particularly concerned about lymph node removal as I considered the risk of lymphoedema too great. I could have had just the cervix removed but weighed up the risks of that and decided not to go ahead.

Has she been told that they think they got all the cancer in the cone biopsy - were there clear margins? How large is the cancer? What type? (squamous cell most common) Do they only want to operate 'just in case'? I didn't find a single doctor who would support my decisions at that time, but I followed my instincts that more surgery wasn't essential and would be harmful to my physical and mental health. I'm now 6 years on with no recurrence.

I hope this helps in some way - whatever choces she makes, she needs to feel that they are her decision, not that she's been railroaded into further surgery.

daisycat01 · 12/02/2007 19:12

She has the squamous cells. As she has 75% of the cervix covered by the cells, when she had the LEEP done he could only remove some of it, he did have to leave a few of the cells behind. She is worried about losing her potentially healthly lymph nodes, but the consultant is saying that she should have them removed. The cancer was 7mm wide by 5mm deep I think. She hasnt had a MRI scan yet, she is seeing the consultant on the 21st and they will do that then.
Can I ask who did you see? Why did you decide not to have any treatment? Also, how old are you??!! Did you not worry that knife surgery would leave scars on the cervix which means that it could fail in pregnancy?
She is quite confused at the moment and has a lot of infromation to try and fathom but not many people to talk to who have had the procedure.

OP posts:
CocoLoco · 12/02/2007 20:18

If the cancer was that size it's borderline 1a2/1b1, as mine was. If she had a LEEP, that's less extensive than the cone biopsy I had (did she have it under general anaesthetic?) so she does need some more of the cervix removed, the question is how much. They will ideally want a clear margin of non-cancerous tissue so are likely to take most of her cervix, which will almost certainly impact on future pregnancies. But they don't have to take the entire cervix, and the lymph nodes are optional too. Yes, radical trach. is now proven effective treatment for this size of cancer, so they're going to encourage her to have the standard procedure (at least trach. is more common now, a few years ago I had to push to even discuss it). But it's up to her - if she wants to preserve as much of her cervix as possible that's her choice.

I googled for a Mr Crawford in the gyn-onc field - is he in Cambridge? I was in London and saw doctors at UCH and Barts. I was 30 when I had the cancer, by the way.

I decided not to have further treatment as in my case it was more likely than not that it would be unnecessary as they thought they'd got all the cells, although there was no certainty. It was a very hard, lonely decision making process - just about everyone I knew thought I was being irresponsible but I felt that it was the right decision. If it had turned out not to be, I would have had the full weight of my choice on my shoulders. Fortunately my DH was very supportive.

Yes I was very concerned about the effect on my cervix in my subsequent pregnancy. I started having scans for potential 'incompetent cervix' but discontinued those and spent an anxious few months wondering if my baby was going to be very premature. It turned out fine, I gave birth at term, a 2 hour textbook home water birth. If your friend is less bothered about the mode of birth than I was, she'll presumably be more accepting of the necessary c/s if she does have the trach.

Lymph nodes - there's something called sentinel node biopsy, where they can track which nodes the cancer would go to first and only remove those - I believe this is still in the experimental stages for cervical cancer though. If she has MRI scans they would only show if the nodes were swollen with cancer, not if there were just a few cancerous cells there so a clear MRI is not definitive proof that the nodes are clear. I reasoned on the balance of probabilities that I was ok, and I was, but it's a desperately hard decision to make. There are risks whatever she does, the risk of unnecessary treatment that permanently damages her shouldn't be underestimated, but most people on hearing the C word don't want to take any chances.

Best of luck to her. And well done you for being such a supportive friend. She needs non judgmental support, whatever she decides to do.

daisycat01 · 12/02/2007 21:15

would you mind if my friend contacted you? I have just told her about your posts, if I give you my email address can you email me your address and I can pass this on to my friend, I think she would really appreciate being able to talk to someone who has been in a similar situation to her right now. I can only pass on information.
If you dont mind, my email address is daisyloynes @ hotmaildotcom

Thanks in advance if you do

OP posts:
CocoLoco · 13/02/2007 09:59

emailed you

fredip71 · 13/02/2007 10:15

I am glad you have found Cocoloco. She will be more help than me as the pre-cancerous cells i had disappeared. Best wishes x

daisycat01 · 13/02/2007 14:14

Thanks, hopefully she will be able to make the decision that is right for her if she has all the information. She has kinda been told to do her research and then decide...which is quite overwhelming.

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mlrmummy1 · 19/02/2007 23:29

A huge thanks to my good friend daisycat01 for all the research she has been doing - looking for various options, finding other people who have or are going through what I am!

I have been referred from my original care center to Addenbrooks and have an appointment on Wednesday to discuss my options further. I am eager to hear exactly what my options are, although somewhat anxious, as once I start hearing them all again it becomes very real....up until now I keep forgetting that its me that this is happening to.

For peace of mind I am veering towards the tracelectomy, although I cant say that I am 100% happy about this. The thought of complications with the removal of my lymph nodes concerns me a lot. The rest of the operation isnt as worrying, providing that I am still able to go on and have children, although like everything in life, there are no guarentees and would hate to know later down the line that I am unable to go on and have children as a result of having this op -or have any complications conceiving!

This experince in general is something that I wouldnt wish upon anyone. Whichever decision I make seems to have consequences and at the end of the day, I just have to ensure that the cancer has gone and there is no spread - and I need peace of mind, for me to be able to go on and lead a normal life once this nightmare is over.

I keep going round and round in circles thinking of the pros and cons with all the options and none of them are ideal. Because of the fertility aspect and my anxiousness for closure, I do not feel I am in a position to be able to leave treatment - although at times I am tempted to forget that this is really happening!

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