Mucinous cancer

Hi willow, I hope you are well!

I don’t have mucinous but clear cell which is also rare - after my doctor said it was resistant to chemo I admit I went home and wept as it seemed even more unfair! Then I did an internet search - very bad bad idea!

Anyway, I cannot advise you about the chemo for mucinous as i think for clear cell they do it even though only  a small percent are successful because is aggressive, but it does depend on the stage ( so I am 1c and anticipating having it). 

What I would advise is to go to the ovacome site and ask the exact same question, it is more active than this one and I searched on mucinous there and there are a whole load of ladies there with that type.  To get to the site, http://www.ovacome.org.uk/, the forum is the little HU at the top.

When I found I was a rare type it was hard to find out anything from the internet that was not grim - then I asked a similar question to yours on ovacome and got lots of responses from people who were rare like me at different stages in their treatment, and it was a huge help, so it will hopefully help you too!

The other thing is, remember you can always get a second opinion on any treatment, ovacome or Macmillan support can give you advise on how to do that.

Best of luck with the search xxx

Hi Willow

If you search on this site for mucinous you will come across a few threads. You have to work at it!

I am mucinous stage 1C grade 1

Do you understand what is meant by your staging? I ask as you find in the NICE guidelines that chemo is only needed if you are Stage 1C or above. Stage 1A is considered to be fully contained with no bursting of the cyst. 

You should still be monitored according to the local protocol. Some oncologists suggest a watch and wait most ladies prefer active monitoring. 

I would recommend asking for CA19-9 and a CEA test as well as the CA125 as these are usually more useful for mucinous. This is because it acts differently to other OC. It acts more like bowel cancer which is mucinous in type. 

It is worth asking for your histology report. ( you have to be persistent) as mucinous oc can be mistaken for mets of bowel cancer. For primary mucinous oc you should be looking for

Cyst on one ovary only

Cyst nearly always over 12 cm in size

No hilar involvement 

K7 positivity

Cell type to be expansive tather than infiltrative 

As others have said the Ovacome site is also useful. 

Best wishes 

Fay

Hi Willow

The cell type should read expansile- rotten predictive text!!

Fay

Hi Roobarb, 

Thank you very much for your reply. I have been on the Ovacome site and you are right, it does have more info on my type. 

I did exactly what you did at first, googled it and scared myself silly! It's nice to talk to other ladies like yourself who are also going through these difficult things - it makes me feel much more positive about it all, so thank you.

Best wishes to you, and good luck with your treatment xxx

Hi Fay,

Thank you for all the information, I have found that very useful in understanding my condition, and will certainly be asking a few more questions when I go back to see my oncologist.

I will also be asking for the CA 19-9 test because he said the my CA125 test was not a useful indicator in my case, because it has always shown to be normal. 

Thanks again, and may I wish you well in your treatment too, xxx

Hi Willow

Also the CEA blood test. It is raised in 89% of mucinous cases so a pretty good though not guaranteed indicator. I have all 3 tests every 3 months. Keep us updated. 

Fay

Hi,

I have recently been diagnosed with mucinous ovarian cancer stage 1c and will be starting chemotherapy soon but am concerned about reading that chemo doesn't work for this type of cancer. Any information would be much appreciated 

Thanks 

Jay

Hi Jay

look at the paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4261626/pdf/nihms644029.pdf

Although it is now 5 years old it is still very relevant. It will tell you almost all you need to know. 

Chemo is about 70% ineffective so you can read that as 30% works. Take that how you will. NICE guidelines state chemo for stage 1C and above. However. A lot of oncologists recommend a wait and watch approach as chemo not very effective. As I did not have any symptoms to start with so did not know what to watch for I opted for chemo. Other ladies have done watch and wait. Tough choice. 

I would also suggest you join Ovacome on healthunlocked as there have been a few threads on mucinous OC. You may get more replies there. In USA they do the FOLFOX regime as they do in Ireland. This is because mucinous acts like bowel cancer. There was a study (google cog 241) to compare the 2 regimes but there were not enough participants so it was abandoned. Early results indicated both regimes results were similar but there were not enough for it to be statistically significant. 

There is also a slide presentation on the net of a lecture given by I think it was Timothy Perrin. Also this gives lots of information. 

I would emphasise what I put in an earlier post in this thread that. You make sure you get blood tests for CA19-9 and CEA as these are usually better indicators for mucinous than CA125. You may have to push for these but it woul£ be good to have a baseline reading before you start treatment. 

Good luck

Fay

Hi, Famous 

how are you?

I hope you are well 

wonder if you see my message or not 

found I got the same cancer as you mucinous 1c3 but grade 2 , was raptured few times that’s why C and they told I will have chemo . I wonder if you asked your oncologist to get for you the bowel chemo as this type is more as bowel or you just went for a general gyno ovarian chemo , did you have any choice , did they offer you HIPEC or anything else? 
regards 

Hi Zhazi 

Hope you are ok. 

Even though I went to Royal Marsden in London for a second opinion they would not recommend the bowel regime as they have to follow the UK NICE guidelines. So I ended up with the usual carbo/paclitaxol regime. 
As far as I know they do not offer Hipec in the UK but things have changed since I underwent treatment. Hipec does tend to be offered in the USA quite often. 
A friend of mine had the bowel regime but she had private treatment and not via the NHS. 
best wishes 

Fay