Local advanced bowel cancer

Hi there again Tom143

I have looked up about  NICHE 2 and it seems a little bewildering. 

I have had a call from hospital this afternoon to give me a date for my PET ct scan next Wednesday at 2.15.

It's all happened so quickly I will have plenty of questions for the team at the hospital, which is a different hospital than I've been dealing with up to now. 

I have a wonderdul nurse who spoke with me earlier this afternoon as I'm suffering terribly today with my bowels

Yes my tumor is very low down in my rectum but thankfully it is local. 

I hope your CAT scan has gone well today and shown a vast improvement in things for you. 

I appreciate you reaching out to me. Thank you  

I'm learning my dance skills from Strictly! 

PaddyBud

Hi Tom143,

Just reading your comment and I am in a very similar situation with a stage 3 colon cancer abutting the duodenum. I previously had chemotherapy to reduce the size of tumour which worked but tumour grew back whilst waiting for surgery. I am now starting Keytruda as the cancer is shown to be MMR. Anyways I just wanted to ask how often where you given Keytruda? Was it every 3 weeks or 6 weeks?

 Tom143 Hi Diana67 and a warm welcome to the board. I’ve tagged Tom so hopefully he’ll see you post? x

Hi, yes just seen your post. I have Keytruda once every three weeks, for me it has worked wonders, my cancer is >90% dead after 10 months, with maybe only a bit of inflammation lighting a tiny part of my PET scan. It seems I will still have to have the op to get rid of the dead tumour as it might come back, the say it might be all dead but no way of knowing. If you need to ask me anything please just ask. I know everyone is different and cancers react differently but if I can let you know how things were for me I would be happy to help you.

Hi PaddyBud,

Should the scan show lymph node invasion you could ask about SABR, which is a targeted radiotherapy treatment. It was considered by my care team after scans showed my bowel cancer had spread to remote lymph nodes but as it is a high energy treatment it can only be used where up to three lymph nodes have been invaded. I’m a bit beyond on that!

Kind regards.

Maninbath

Hi, I had a bit of a scare a couple of weeks back,  my oncologist suggested I see my denist about my taste buds and tongue. The denist refered me for mouth cancer, maybe due to the immunotherapy. When I went to see about it everythig was OK which was a big relief.

I  now have another problem, this one I am lucky to have and  count myself very lucky, so many would love to have this choice. The choice  I now have is the same as before, to have a resection  along with an op on my duodenum and liver, or not. My Doctors tell me we are in unknown territory in regards to my treatment. Even the Surgeon yesterday was was in 2 minds about an op. I have a strand from my cancer to my duodenum, it could be attached or not or. it may be attched to my liver as well, but they don't seem to concern themshelves with that. The main point is the cancer might be dead or maybe an odd cell might be alive, if they operate they could find my cancer all dead and there was no reason for the op, but if I don't have the op they don't know if it could come back or not and come back in that strand and go to the duodeum. What I need to decide  is it better to wait and see, carry on with the immunotherapy. I know the oncologist will go along with that. or do I have the op? If anyone reads this I would love some input, your veiws no matter what they might be would be very welcome. Please get in touch

Oh Tom143  what a complex choice . Had it been a great response to chemo I would have said go for surgery as complete chemo responses are not too common but immunotherapy is such a big unknown .

However if you would like an independent clinical opinion you can ask your Team to involve a second opinion . This is a great resource as it allows you to connect with the specialist in the fields who are at the cutting edge of these decisions and can sometimes throw up another aspect which can in fact influence your decision.

We found speaking with a surgeon at a centre of excellence for the liver such a help in making a complex decision. 
You might like to ask the surgical team if it’s required in the future what surgical conditions would be required . 
Would current treatment impact future surgery . These were aspects we did not have the clinical insights which surfaced in our discussion.

My mum wanted all the information to make a fully informed choice and it sounds like you might need some more information yourself . Our helpline staff is also there to chat with .

0808 808 0000 .

Either way we are here for you .

Court 

hello, I can't seem to see my last post? So I will post it again. I deceided to have the operation, right hemicolectomy,, which I had a couple of weeks ago. My cancer was attached to my duodenum, but but a thin thread, so they only had to cut out a section of my duodenum. I must admit not the most pleasent of experienecs, but it didn't help that I got shingles 10 days after the op. The thing now is to see what the biopsy says about my cancer and how the Keytruda eaffected it. One thing I do know is that without the Keytruda they couldn't operate. I will post what the say about my cancer so people can see the results of Keytruda on my cancer.

Hi, just spoke to my oncologist about my results after they removed my cancer. One thing I need to say is that I have been very lucky and a lot of people won't have the results I have, but hopefully it can be a chink of light for some. Last December I was diagnosed with stage 2 locally advance cancer which they said they couldn't operate on because ot it position etc.. they said my tumor was dmmr mismatch which meant they could try Keytruda inmunotherapy. I had the immnotherapy for 10 monts with some side effects, see my blog here. In the end they said I could have the cancer removed if I wanted to, I deceied to have it removed even though they thought it 90> response. they could not tell it it was a complete response or not. I had the op done a couple of weeks ago and spoke to my oncologist this morning. She told me that there were no living cancer cells in my tumor or lymph nodes, the keytruda had completely killed off the cancer. The chance of this cancer returning was about 1%. I am a very lucky man that I know, my heart goes out to others so they could be as lucky as me.

hi my posts seem to have dissappeared? will try again. I had my cancer removed about 3 weeks ago. I was on Keytruda for 10 months. I had stage 2 locally advancedcancer which they said tey couldn't operated on but they would try Keytruda immunotherapy. I was on this for 10 months. The result from my oncoogist was that the cancer they removed was 100% dead from the Keytruda. The lymph nodes had no live cancer cells if any, 50> were removed and checked. She said I was now free of cancer and a1%  chance of  it coming back. I know how lucky I am.