Pseudomyxoma mucinous adenocarcinoma

Hi Jag1 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I can totally relate to your feelings of disbelief as, after being diagnosed with melanoma 5 years ago and being on the cusp of being discharged, I have now discovered that I have breast cancer and, having had surgery, I'm about to embark on chemotherapy. I know they are totally different cancers to your wife's but any type of cancer hits you for six.

As I've noticed that no one has replied to your post yet I've done a search in the group to see if there are any previous posts which mention pseudomyxoma mucinous adenocarcinoma and found these for you to have a look through. You could respond to any where you think the poster might be able to help you further by clicking on 'reply'.

I hope you don't mind me suggesting that you also join the carers only group as this will give you a chance to talk to others who are looking after someone with cancer. If this is something that you feel might help you clicking on the link I've created will take you to the group where you can then join and post in the same way as you did here. You can also join in with existing conversations by clicking on 'reply'.

When you have a minute it would be good if you could pop something about your wife's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

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Hello Jag1 and welcome to the community. You are not alone on your journey. I was diagnosed with pseudomyxoma peritonei in 2010 and I am a Basingstoke patient. Is the plan to start with chemo with a view to doing surgery at a later date?

Hello Angela yes the plan is to start with chemotherapy to try and shrink the tumours and then she may be referred to Basingstoke for surgery. I was a bit surprised as I had read that systemic chemotherapy does not work with PMP. Also she has the aggressive version mucinous adenocarcinoma. I did write a letter to Basingstoke and they have given us an appointment on 13th June with one of the consultant surgeons which has given us some hope. Thank you for your reply.

Hello just wanted to update and give everyone some positive news. Mr Tzivanakis from Basingstoke invited us for an appointment in June and made everything so much clearer. Chemotherapy was needed to at least hold the tumours from growing while my body recovered from the hysterectomy in March . He also explained the risks and the reason an operation is not always  the right decision for everyone.   Amazingly after 3 months of chemotherapy my tumours had shrunk to the point that Basingstoke were willing to operate. We were so relieved to hear this news. We heard from Mr Tzivanakis who invited me in for surgery on November 14th. Everything went according to plan and I am now home recuperating well with the news that the histology report shows all signs of the tumours are gone and I will need CT scans and blood tests every year for 5 years.  I’m writing this because everything did seem very hopeless at the beginning and I hope it gives hope to others that miracles can happen. The team at Basingstoke are amazing. The care is second to none. When they say they’ll contact you they do. You feel so safe. Their knowledge is amazing,which after floundering around not understanding anything was such a comfort. Ali Clarke is my specialist nurse who will contact me periodically to see how I’m getting on and I will always be able to contact her. I am so grateful to be given the opportunity to have the operation and am aware this is not always the case but I think hope and positivity is hugely important and i hope my story helps someone feel that. 

This is great news. Here's hoping your recovery continues to be uneventful!

Hi Jag1

Just wanted to follow up on your post, I was diagnosed with PMP in December 2021, I then had surgery in February 2022 where the plan was to remove the cancer cells, unfortunately not all removed and I was told that a second surgery was planned, a 6 month scan was done and my consultant advised it was best not go ahead with surgery and to try chemotherapy to shrink the cells, I have finished my course of chemo in November 2022, and another scan has been done which they feel shows too much mucus and so surgery is not possible, I'm a bit confused as to what is going on, I don't fully understand the decision

They plan to get a second opinion from Basingstoke and if that doesn't work then a further course of chemotherapy which.my consultant is not very confident on

Can I ask what chemotherapy treatment you were put on? I was put on oxaliplatin with capcetabine tablets for 6 months 

Hi JK87 Sorry to hear you are going through this similar journey to me. As you can see from my thread I had a hysterectomy in March where my cancer was discovered and my appendix removed. I too was given chemotherapy, the same drugs as you, fortnightly over 3 months. I too wasn’t confident that chemotherapy would be successful. My son had read that going on a sugar and reduced carb diet (Keto diet) sometimes helps the chemotherapy to work. There is no medical evidence that it does and it can carry its own risks so I would not recommend trying this without seeking advice first but for me my tumours shrank considerably. This could have happened anyway but I think it did help me to know I was taking control in a small way. Basingstoke is amazing put your faith in their opinion. They explained the reasons for trying chemotherapy before considering the operation. In my case it was to try and stop the spread until my body was strong enough to have the operation following my hysterectomy in March. My thoughts are with you and I hope you have a positive outcome. 

Hi Jag1 

Thanks for your response 

Can I ask did you contact Basingstoke directly yourself? If so I might try that myself as it would be to speak to them

My chemotherapy doesn't look like it got the desired outcome it has stop the spread but hasn't shrunk it as far as I understand, a lot of it I still don't understand, I'm hoping I will get to speak with a consultant directly at Basingstoke to get some clearer answers 

Thanks 

JK

I was referred to Basingstoke by the surgeon who did my hysterectomy.
My husband did write also as we couldn’t fully understand what was happening as we were being copied in on letters between the surgeon and the oncologist which we didn’t understand. As my operation began as gynaecology the surgeon understandably did inform me that PMP is not his field of expertise.