Hi every one, just wondering if any one has any experience of any of what I am experiencing with my anal cancer, and other possible cancers?
Apologies if it's a bit long, but....it's complicated!
Saw my colorectal surgeon mid Feb, followed by biopsy and removal of tumour, not thought to be cancerous.
Mid March, CT scan, which showed some anomalies, so MRI and CT-PET scans.
These showed swollen lymph nodes in the abdomen, which my Dr,, and two consultants that I saw , thought was lymphoma.
Another anal biopsy and surgery, consultant told me that the anal tumour was an AIN, but shortly after phoned to say they had found a small area of cancer,
Saw an urologist consultant about my raised PSA, and he said that he didnt know whether I had prostate cancer or not, but was reliuctant to do a biopsy.
Instead he orfered another PSA test.
I mentioned that I had three swollen nodes in my neck, which on examing, said were 'highly suspicious for lymphoma', although he said that prostate cancer can rarely cause swollen nodes in the neck.
Nurse called two weeks ago, to say that they had a meeting to discuss my case, and that I was to have 5 weeks of radiotherapy, and two sessions of chemo.
i asked if they had had the reults of the CT-PET scan, which she wasn't aware of, and on checking, told me that the cancer had spread to the lymph nodes in my abdomen. She also told me that my PSA was still high.
Saw the oncologist ten days ago, and she told me that she had only ever seen two cases where anal cancer had spread to the abdomen, but they were in more advanced stages of the cancer, but they were both sucessfully treated. So now my cancer diagnosis had changed from stage one to stage 3, which she said, indicated a more agressive cancer.
With regards to the nodes in the neck, she agreed, prostate cancer could be the cause of them, rarely anal cancer, but that it couild be lymphoma.
Then again , it could just be nothing of concern.
Waiting for an prostate biospy, ultra sound of nodes, and possible biopsy of them, depending on what they find..
On July 20th. start 14 weeks of chemo therapy, three week intervals, and five weeks of radio therapy, though of course this could all change!
So now after five months of investigations, they still don't know fully what is going on,but hopefully I will not have any other cancers, and the neck nodes are of no concern.
I was just wondering if any one had any experience of the above, or any comments or words of encouragement?
Welcome to the forum although I am sorry you had the need to find us. And no wonder you need some encouragement, you have had a lot going on in the past five months and that in itself is extremely stressful.
In my case the very presence of cancer triggered inflammation nearby. I was told initially that there looked like spread to the peritoneum by a junior oncologist but when I saw the senior oncologist she was very positive and said it didn't look like spread to her, that they would keep a very close eye on it, and she was correct, I was eventually told it was all clear. The point I am making is that even the people treating us have differing opinions because they don't actually know. However, it sounds as if the team treating you are now coordinating all the various tests that will give you (and them) a better idea of what is going on. Anything else I would be guessing and I think you need a more educated reply than mine.
I had six months' chemo prior to the chemo/radiotherapy regime and tolerated that very well, I do hope this is your experience.
I am so sorry you are going through all this, and wish I could help you more.
No experience of anything like what you're facing, Mike, but I sure hope your team is able to zero in and get you some more solid information. I'd want some more complete answers about the neck nodes- okay, not cancer, but WHAT?
Your treatment is aggressive, and while that's difficult, it's also good. Get in there and clear out EVERYTHING.
How's your support system? With a situation this complicated, the more help you have waiting in the wings, the better.
I'm glad you found this forum, come here whenever it gets hard and know that people have your back.
I don’t have exactly the same experience as you but can sympathise with a complicated diagnosis. I have been diagnosed as having anal cancer and my lymph nodes in the groin were biopsied too in case it had spread. Luckily those seem to be clear although the consultant said he will still treat one of them just in case it does have any cancer there. The complication in my case is due to Crohn’s disease which means loads of different teams are looking at my care from different perspectives. So far I have been waiting to find out my treatment from early May so not quite as long, but feels long enough! So I do feel for you having waited for five months. It sounds like they have a really comprehensive plan for you and I wish you the best with all of the treatment.
Hi mikel1956 ,
Welcome to the Macmillan online community although I’m so sorry that you’re having to deal with all of this right now.
You’re right in saying that your case is quite complicated, you have a lot going on, 5 months is a long time for you to still not have been given definitive answers too! Hopefully you’ll have all the answers very soon. You’ve definitely come to the right place for support.
As Irene has said inflammation can be an issue & hopefully you’ll find that this is the case at the very least with your nodes.
Your team seem to have a treatment plan in place at the moment that covers all eventualities although as you say pending the prostate biopsy & scans on your nodes.
I’m sorry I couldn’t be of more help but know that we’re here to offer support & lend a listening ear if you need one.