Mums results and worry following debulking surgery - My Ovacome

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Mums results and worry following debulking surgery

LouieB123 profile image

Hi everyone, hope you’re all keeping well. Some of you may remember I posted a few weeks ago about mums debulking surgery (she was debating if she’d consent to stoma), well surgery went well and they removed all visible disease. However she has been to the Christie today for consultation and they told her they’d also found a nodule on her appendix during surgery, so they removed the appendix too

. Turns out this is a completely different cancer. We’re absolutely shocked to our core. How on Earth is this happening? Nothing to suggest it has gone anywhere else, or that she’ll need any other type of treatment at this stage, but she is being referred to a another consultant. Has anyone ever experienced this? We dont even know what type or anything. Feel numb. How has she been through all of this, for this to happen too. Sorry this is a bit of a somber post. Just can’t get my head around it. Xx

19 Replies

Gosh it’s a roller coaster this journey and you and your poor Mum are finding this out first hand. Best to keep calm if you can and ask for a full explanation. Then you will know what you are dealing with. If the new cancer is in situ and hasn’t gone anywhere, you will be back to square one dealing with OC. I had a melanoma in situ a month before my OC journey started and it was cut out, never caused me any further trouble. Keep asking her team to share what they know and what the plan is now ❤️

LouieB123 profile image
LouieB123 in reply to Lyndy

Thank you lyndy. Yes just praying it’s situ and not gone anywhere. It certainly is a rollercoaster. Feeling so angry for her tonight… Thanks for your kind words. X

I have just had the same thing! Not found on CT but found during surgery.Low grade appendiceal mucinous neoplasm ? Supposed to be rare, cant be that rare then, No special treatment needed in my case.

LouieB123 profile image
LouieB123 in reply to rosebine

Hi Rosebine, thanks for your reply. So very glad you didn’t need anymore treatment. We’re not sure what type it is- think mum and dad were just overwhelmed, they’ve forgotten the name. Mum is naturally really worried about any possible spread. Xx

I'm starting to think that the surgery itself causes the secondary cancers. I have this lump now that they say is a nodule and they won't know exactly what it is till they take it out. But it has to be taken out. Now I'm wondering, wouldn't a biopsy be a good idea, just to check.

Wish you and your Mum the best of luck. xx

Hey thank you for your reply. I’ll be keeping everything crossed for you. It’s such a journey isn’t it. Xxx

Five years ago found early colorectal cancer when I had emergency surgery for perforated colon. Was being monitored for that - different marker and no problems- then when they checked abdominal symptoms thought to be related to previous surgery fornd grade 3 ovarian cancer. Just happens- in my case, think immune system so side swiped by earlier surgery allowed OC in. It's a good an explanation as any. Best wishes to you and all your family - it's a tough time.

Thank you for you’re reply fair-Rosamund. Reassuring to know she’s not alone in this.. hope you’re keeping well. Xx

Please ask for her to be tested for Lynch syndrome, especially if there is any family history of cancer. Ovarian and bowel (appendix is part of the bowel) cancers are strong indicators of Lynch syndrome. Lynch is an inherited susceptibility to a range of different cancers and if she tests positive it's important for other family members to be tested too, and to be screened regularly.

LouieB123 profile image
LouieB123 in reply to SopSinger

I certainly will- knew nothing about this… thank you SopSinger xx

When I had debulking last year they also removed appendix as carcinoid tumour found there, said it unconnected with the OC. It hasnt been mentioned since that time and as far as I know, no further problems. It threw me at the time as it has you but I’d actually forgotten about it since! Hope your mum recovers well, x

LouieB123 profile image
LouieB123 in reply to RoseMS

Thank you RoseMS, it’s really reassuring to know she’s not alone in this and others have experienced a similar situation… so very pleased you’ve needed nothing further. ❤️ Xx

So sorry to hear this. I think the magnitude of the operation is so all consuming of our emotions for this new information to come from left of field is understandably shocking however, it is no longer there is it. They will have to refer on to an expert to check what their opinion,on any further action is. It may be that it is no different than what would be happening anyway post operatively or they may be satisfied it was encapsulated on the appendix that has now been dealt with. The oncologists all have very specific expertise so best to get your questions answered by the right person. Ask who Mum is being referred to and maybe ring their secretary and see if you could get a telephone consult to ask your immediate questions. If she is still in hospital you could ask to have them to call to her bed for a chat. Try to take on board all the positives from this your lovely Mum now has 'No evidence of disease! ' how good does that sound said out loud. Sending you love and positive vibes.xx

Thank you Tillymint (again ❤️) for your kind words. So this morning I’ve made a list of questions and asked to speak to the Macmillan nurse (who is always fantastic). Think mum and dad felt a bit left in the dark yesterday, whoever they saw was quite vague and said it wasn’t their area of expertise so no idea as to possible spread- that was a maybe, possible further surgery was also a maybe but all still unknown. Like you say it could have been in situ and encapsulated, so no need to panic… but we just have so many questions. It’s going back to MDT week Friday. Mum seems to think it’s an aggressive one as they mentioned the reoccurrence risk, but again not definite. Anyway hopefully Macmillan can shed some light… what a rollercoaster. Hope you’re keeping well… xx

Hope it's all positive answers from the appendix experts. Xx

Hi LouieB123

I am really sorry to hear that you and your family are going through such a worrying time in relation to your Mum’s uncertain diagnosis.

I can see that you have had lots of supportive and informative replies from the forum community in relation to your post but I wanted to let you know about the support available through Ovacome. If you would like to get in touch to discuss your concerns and questions further, please phone our Support Line on 0800 008 7054 or 07503 682311, email us at support@ovacome.org.uk or use the Instant Chat function on our website. All our services are available Monday – Friday, 10am – 5pm.

I hope that the referral to a new consultant provides some clarity and your Mum is able to access the appropriate treatment, information and support.

Best wishes

Annie

Ovacome Support

Hi Annie thank you for reaching out. Just found out it is an incredibly rare type, goblet cell carcinoma. No idea what this means in terms of further treatment. We’re all absolutely devastated. She’s come so far. X

Hi louie 'rare' doesn't always mean more dangerous or aggressive it means it is 'rare' so please try not to panic still. (I know easier said than done!) Cancer research UK are a good source of information I found the nurses that manage their helpline were happy to talk in lay mans terms and explain things that sometimes experts presume we understand. I have the also rare primary peritoneal cancer. The experts were convinced it was going to be secondary ovarian but surprised it wasn't That's when it got worrying and confusing and I rang them. Might be worth giving them a call. Sending positivity and gentle hugs to you and Mum.x

I had appendicitis and went to surgery for its removal. A week later I was told it was cancerous but had not spread. Three months later, I was diagnosed with primary peritoneal cancer 3b which was unrelated to cancer of the appendix. Both are extremely rare. Sometimes there is no rhyme or reason to cancer.

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