Mucious cancer, Chemo or not? please help?

38yrs old, Diagnosed after Laparoscopic procedure to remove left ovary and mass with mucious ovarian cancer stage 2c due to cyst bursting during op grade 2. I was told by consultant and CIN nurse i would need to have laparotomy de bulking and then chemo.

I am currently 1 week post op and recovering well. My new consultant and CIN nurse have mentioned i will not automatically receive Chemo but it will be a 'discussion'we will have.

Im due back to the hospital in 2 weeks time and don't no what to expect or what the right decision is? do I choose (is that what they mean by discussion) chemo or watch and wait?

Worried as took the more conservative approach by having the laparoscopic.

Dont want to make the wrong decision.

Thank You

Michelle x

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  • Sorry I am not much help but you could give ovacome helpline a ring and ask their advice tel 0845 371 0554 or 0207 299 6650 ( open office hours only)

    Love x G x

    Ps if you don't want your question to be on the open internet you are best pressing members only you can still do this by pressing edit then going to the bottom of your post and press on the " members only" and resending then your post will have a little padlock at the side. ( this one hasn't )

  • Thanks Gwyn,

    . xx

    I am happy for non members to see the post. There is so little information out there so my post may help someone else in the future

  • That's fine michelle,

    Some people don't want their family etc to read it, (in case it worries them) but you do have a good point... xx

  • Hi there Michelle

    I had a borderline mucinous tumour removed 4 years ago now. If this is what you had , and it sounds as if this may be the case, then chemo would be an option because of the spill.

    I very much doubt if you will just be asked to choose one way or another and not given any other information.

    Qustions you may wish to ask are what are the approximate rates of recurrence with surgery and chemo, compared with surgery alone. I had everything out, nothing spilled as far as I know and was very surprised to get this diagnosis. It was a terrible shock, but I did get over it.

    You should be given more information abouth the pathology at your next appointment , the doctors will probably check your healing after the surgery , they may do or order a scan , ask how you are feeling and/or do a blood test. If you have a full debulking i.e. have all your femal organs out then this is a major operation and the usual minimum recovery time is six weeks. However you have had recent surgery and the shock of teh diagnosis , so you will need more time to recover.

    You may want to consider bringing somebody with you to the next appointment. Also write down any questions you have as its really easy to forget what was said. Ask thw doctor how you can get in contact with him or her if you have any questions before the operation.

    Please dont beat yourself up about having opted for a laparoscopy. Hindsight is the only science that is 100% accurate all the time.

    Take care and keep in touch with us.

    Charlie xxx

  • Thanks for your reply Charlie.

    Sorry if my message was not clear, think it sounded right in my head-)

    I am currently a week on after the big op. Had full debulking,and recovering well at the moment (only slight hot flushes but not gone completely nuts... yet-)

    The spillage happened during the the first procedure and that consultant informed me histology showed it was malignant so was diagnosed with stage 2b Mucinous cystadenocarcinoma (she was also surprised with the result) This consultant and CIN nurse informed me i would need debulking and chemo due to spillage was then referred to another hospital who deal with ovarian cancer.

    The consultant who completed my debulking surgery explained i was stage 2c due to the spillage and mentioned that this type of cancer does not respond well to chemo?

    I went to my appointment with new consultant in new hospital.

    The consultant who completed my debulking surgery explained i was stage 2c due to the spillage and mentioned that this type of cancer does not respond well to chemo?

    As you are aware your head is not in the right place and you dont know what questions to ask and if you dont ask questions no one volunteers information so i came anyway quite confused. The new CIN nurse we saw the same day handing over various leaflets then said "oh you dont need chemo leaflets as you more than likely wont be having chemo" we where surprised to be given this information. We did ask what would happen after surgery? She said "well lets just wait and see! lots of ifs and butts!"

    We left the hospital in a daze.

    I have spoken to the CIN nurse and pushed for some answers. She has spoken to the Consultant about the chemo and consultant has said it will be a "discussion" we will have. CIN nurse went on to explain that after my debulking there maybe no evidence of disease and they would rather treat something they can see? Which makes sense but then i think they automatically give chemo at my stage for other ovarian cancer just to mop up any cell that they can not detect.

    Im just trying to get as prepared as possible before I go back for my results. so i know what questions to ask and what to expect....as much as possible.

    sorry for the long message!

    Very grateful to have someone to talk to about this so i am rambling on.

    Thankyou

    Michelle xxx

  • Did you have chemo as well charlie? x

  • Hi Michelle .. If you live in England, the discussion referred to will probably be between members of the team who meet once a week to discuss cases at their Multidisciplinary Team Meeting. One of the reasons given for improved rates of survival by Cancer Research UK, is the fact that doctors work together in this way. They'll weigh up the risks and benefits when deciding whether you're to have chemo or not. Ovarian isn't one disease and even two women who have the same type and are at the same stage can be different. For example, what type of treatment you have may depend on the grade. Even if you have a slow growing cancer, there may be elements which are aggressive somewhere else. Some people are diagnosed with aggressive disease which just happens to be in a less difficult place, so it's all removed. Another person may have a slower growth but it's in a trickier position which makes surgery difficult. My palliative consultant says just because someone has extensive disease doesn't mean they're less at risk than someone who has a very small growth. I could give lots of other examples, but I just want to say that your consultant will have your best interests at heart. As has been said, you could write down your questions and ask for fuller explanations if you don't understand. Love to you. T xx

  • Thanks for your advice Tina, really appreciate the help, roll on 2 weeks! xxx

  • Hi again Michelle

    Good that you have the big operation over with.....no I didn't need chemo....and my friend Tina has explained the rationale far better than I could.

    Do try to take things very easy physically and emotionally....you have had a huge ordeal and your poor little mind and body need to heal.

    Take care xxxx

  • Thanks Charlie

    Taking each good day as it comes as i am expecting to fall (emotionally/mentally) at some point, Things have been far better than what I thought.

    Not knowing what to expect, I had visions of a massive wound down my stomach and feeling like a complete mess after being put in early menopause! haha I like to prepare for the worse then everything is a bonus!

    Im walking around, still uncomfortable but nothing terrible and I have not had emotional breakdown yet. Thankfully my body and mind are managing and the cut was nothing like I expected!

    Thankyou all again for you support and advice. xxx

  • You are most welcome Michelle....the first week after the operation is the worst in terms of discomfort ..things start to get better quickly and after week three you really see a big improvement. Most people find the surgery far easier than they feared.

    Charlie xxx

  • Hi,

    Although many ladies seem to have chemo after surgery, it doesn't always happen. When my ov ca was diagnosed, I was told I would have chemo after surgery. But then they found I had a granulosa cell tumour, which doesn't respond well to it, so I was told I wouldn't be having it.

    Di

  • Hi,

    I was diagnosed with OC Stage 1C, this is because the cyst containing the cells was attached to the outside of the ovary, if it had been inside it would have been 1A. I was offered mop up chemo of which I had one dose of single agent Carboplatin. Having chatted to my specialist nurse recently she said that they are opting more for wait and see rather than routine chemo.

    LA

  • Hi, I had surgery may 2012 for a huge mucinous tumour,had everything out including appendix,my tumour burst during op I was given a chemo wash in op.Since then I have had no chemo & been fine.It hasn't really bothered me not having chemo but everyone is different & many of my friends & family think I should have had chemo as the tumour I had was huge & covered the entire front of me,I looked 3 times the size I did when pregnant.I have been assured it was the best treatment for me as surgeon was confident & the op went much better than expected.I have c125 blood tests & regular checks & am sure if I do have any problems they will be picked up quickly.

  • I am stage 2c clear cellhad my surgery 9 weeks ago and up currently undergoing chemo as the cyst burst as they removed it. My 3rd cycle is this Friday

  • I had a mucinous adenocarcinoma of my right ovary diagnosed at stage 1a in October 2011. I did not have chemo and have not suffered any recurrence so far. (Needless to say I'm hoping I never do!)

    It's true that mucinous tumours tend not to respond particularly well to the chemo normally used for ovarian cancer - or to any other chemo, for that matter. It is worth asking your gynae oncologist what percentage of people with your sort of tumour respond to chemo, and what they would be looking for to judge response in your case. Presumably this will just be no sign of recurrence, but as CA125 isn't a particularly good indicator for mucinous tumours, it would probably reassure you to know how they would be likely to detect a recurrence.

    It might be worth asking about radiotherapy - I know there has been some research coming from British Columbia which suggested that radiotherapy was beneficial in cases with mucinous tumours at stage 1c or 2.

    Do not in any case beat yourself up about decisions past and future - all that would do would be to make you feel miserable! Listen to what your doctors say, think about how the different routes they suggest would affect you personally, and make the decision that feels right for you. If your doctors have a strong preference for one route over another, they will tell you, and you can take that into account when making your decision.

    All the best for your appointment and after,

    Barbara

  • Thank you all for sharing your experiences and advice.

    I have a list of questions on the go of what to ask the consultant next week.

    Michelle

    xxx

  • Hi Michelle38, your story sounds similar to mine but I'm a bit behind you as my bigger surgery isn't until 21 May so I read your post with interest. Have you had your appointment yet? If so, what was the outcome? I've been told to expect chemo after the surgery and wondered if that was suggested for you. Glad to hear you are managing after the surgery x

  • Hi Mimi, Had my appointment last Wednesday, thankfully no evidence of disease was found:) After being in a room with a lovely doctor who could not answer any of my questions!

    As you all know I tried to go to this meeting very prepared so I did not come out confused! Im not sure if they thought they could just tell me the results of the histology and give me appointment for chemo and off id go! Quite shocking really. She seemed uncomfortable after a few times of saying to me "I will have to ask the consultant" she eventually asked if we would like to see the consultant!

    They have recommended I have chemo ( Carboplatin) I am not sure why it is not the combination, will ask the medical oncologist when I see him in two weeks.. The consultant we got to see explained everything really well. I have lots of positives as the cancer had only gone to the wall of the peritoneum and was not on the bowel. But as I had grade 2 cells and they could not be sure that there was no microscopic cells left on the wall or from the spillage that chemo would be needed.

    She did say that until something else is proven to work they have to continue to use the procedures they would normally follow and for some people they may not be resistant to chemo. The consultant said they only had 6 people nation wide went on the last trial.

    Hope this is helpful.

    Good luck with your surgery, for me it was not as bad as I thought it was going to be.

    Michelle xx

  • Hi Michelle, I had my results from the hysterectomy yesterday and I was told that there is no evidence of disease and that it hadn't spread to the lymph nodes or anywhere else. I was also told that they did not recommend chemo for me, as latest research had showed that although mucinous cancers were more resistant to chemo, they were also least likely to "seed" and microscopically spread elsewhere, even though I had a grade 3.

    I am happy with that result and will have a follow up appointment in 3 months. I was so shocked, I didn't ask many questions, but did say that I didn't have symptoms until my emergency surgery, so what should I look out for. I was told that any persistent pain in lower abdomen, change in bladder and bowel habits or bleeding would indicate that they would see me sooner. I am thrilled, but also weirdly confused about my happy outcome. I feel like I've had the worlds shortest cancer diagnosis if that makes sense!

    Another plus is that I've finally got my prescription for HRT and not a moment too soon. I've turned into a monster with the mood swings and "tropical moments"!!!

    Please let me know how you get on, and I hope it all goes smoothly for you.

    Mimi x

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