Mucinous cancer for beginners

[Helenafrost53]

Hi all. I am nearly at the end of chemo for grade 1a mucinous ovarian cancer. Initially I remember hearing somewhere by the medics that this type of cancer doesn’t respond to chemo. I have had to have two ops including full hysterectomy and removal of my spleen plus other what i call ‘cancer searching’ parts of the ops. My question is, is there anyone who has had this apparently rare form, had chemo and in remission?. I fear that once the ‘comfort blanket of chemo’ has gone this horrible thing will come back, especially as I had no initial symptoms to alert me to the fact of anything being wrong.

[lynn6156]

Hi and welcome!

There are a few of us around with the mucinous thing...some have had it longer than others. I'm afraid we're all in the same boat wondering whether it will come back etc. Stage 1a is said to have a very good success rate just with surgery. I'm surprised you got chemo as well as it's usually the 1c and upwards folks who get that.

Bear in mind that lots of people in remission wander off and live their lives - they don't hang around in forums like this so much. Anyway - someone will pop along shortly.

Whereabouts in the world are you?

Lynn

x

[Helenafrost53 in reply to lynn6156]

Hi lynn6156, Im in London. I think my stuff is all very preventative. It all started in 2017 with a huge ovarian cyst that was quick growing. This resulted in a full hysterectomy in April 2017. I thought that was it but by November 2017 doctors were saying my tumor markers were going up rather than down. So I guess this was the cancer bit. Second op saw me having to have my spleen removed. Think it was cancerous. Its heartening to hear that there might be quite a good success rate with surgery because I don't think I have much else internally that I can afford to have taken out.

[Caroles1]

Hi,

I was Mucinous 1c had the op and 6 months Chemo and am still here nearly 4 years later. I too am surprised you had chemo, but glad for you since it gives you the best chance, they usually give it to 1c and above, I presume you had carbo/taxol. I found for me the ca125 blood test was a good indicator and have that now every 6 months and a gynaecologist examination.

There must be a good indicator for you and I suggest you have that check on a regular basis.Or think about the symptoms that had yourself checked out in the first place. Know your body and get an exam if you are at all worried.

I have to say it seems like you are having the best care anyway, speak to your team about your options,

Carole xxx

[Helenafrost53 in reply to Caroles1]

Thanks Carole its heartening to hear that 4 years later the horrible C hasn't returned. I think I had to have Chemo because it seems to be a stubborn thing that want to go away after the first op. I have since had another one so hopefully this is it now and the surgeons have got it all now.

[Maus123]

Hi. I might have misread it but think you did not actually have chemo, right? It's about the scary situation of having to rely on a slightly reduced toolbox in case it returns.

Hopefully it won't return, as stage 1a. But if it does, surgery might be the preferred option wherever feasible. That should hopefully do the trick. It worked for me, for example (although that was borderline/low grade OC not mucinous, and stage 3 to boot). My post-surgery chemo happened mostly to please the German guideline authorities and insurance, not because it actually does anything for me (aside from a new hair do and wobbly feet, yay).

Still, you can always try chemo. It might have a lower chance of tackling the tumour, but it might still succeed anyway.

For now, I wish you a neverending remission. Xx. Maus

[Helenafrost53 in reply to Maus123]

Hi Maus123. Yes I am still having Chemo and I have had 5 of 6 treatments. I am concerned about it returning as initially I was told this type does not respond to Chemo. In fact the doctor wasn't really able to tell me about success rates but more about it being a long term preventative measure. I have had two operations now, I think in the medics attempt to get the cancer cells everywhere they found them. They did a full hysterectomy first and then in the second op I had my spleen removed. Although stage 1a, for me, it has quite serious consequences and I dont feel like I have much more that can be removed in order to completely get rid of it.

[Caroles1]

Hi Helena,

I am surprised if you are diagnosed at1a that you have all these problems, but hope that now you have had your ops and chemo is coming up to the finish you will be good,finish, done and dusted,

Wish you all the best,

Xxx

[Helenafrost53 in reply to Caroles1]

Thanks Caroles1. Me too. Having read a bit more on the site, I now have a few more questions for the Oncologist when I see her on Wednesday. I have had a combination of Paclitaxel and Carboplatin drugs which seems excessive since others seem to suggest the Carbopatin would have done. But, I have a long list of treatment that has been done so far so there must be a reason for their course of action. I'm just glad its soon coming to an end. A little scared about the long term post-Chemo effects. I guess another mountain to climb and conquer.

[lynn6156 in reply to Helenafrost53]

I'd ask them if their staging might have been a little wobbly, but on the other hand they've given you all the best treatment so that's the main thing.

I don't know anything about long term side effects but I'll be grateful if I'm around to get a few

Lynn

x

[Caroles1]

Sounds like they are taking good care of you, personally, I would rather have the 2 chemos to ensure the best outcome. We are both still here and I am sure the long term effects won’t be so bad,

Love Carole xx

[Mrs_Atko]

Hi Helena,

Another mucinous lady here 👋🏻 stage 1a. Treatment was 2 ops only, no chemo (still have remaining ovary rather than hysterectomy as only 33 at dx). Am wondering if your staging was correct as it seems you may have been offered chemo because spleen showed signs of cancer? (in which case would it not be staged differently?) Mine was 1a as was confined to my affected ovary, which was removed along with appendix. Biopsies elsewhere and nothing else found. Anyways, I’m just over 2 years clear from last op and so far so good. Moved onto annual scans now (no ca-125 as was never a good indicator for me and generally not for mucinous). I wish you well in your journey. Jemima xx

[Helenafrost53 in reply to Mrs_Atko]

Thank you Mrs Atko. Many questions to ask. I have an appointment with the Oncologist this afternoon so will try to understand why chemo at grading 1a. Not too late. Thank you.

[BJ_UK]

I was diagnosed with stage 1a mucinous adenocarcinoma of my right ovary 7 years ago. The tumour was removed successfully and I did not have to have chemo. I have been in remission ever since my TAH, BSO and omentectomy.

Best wishes,

Barbara