Possible Chemo radiotherapy following 6 cycles of carbo /pacli

Hello Mazzamoo2a9db3

We chatted a little while ago about my lymph nodes mets.

My situation is a little different as my anal/rectal SCC HPV16 was treated with chemoradiation and was clear on the last scans. They discovered mets on my PET scan in January, so I am also being treated with carbo/taxel, no immunotherapy available at the moment.

I am a member of a worldwide anal cancer group and your situation of no primary does come up for discussion occasionally. It's a FB page if you would like more information.

Your lymph node results are very positive and give me hope for my current situation. Metastic lymph nodes are not very well documented as the majority of cases are diagnosed early and successfully treated using chemoradiation. 

Regarding radiotherapy, I had 30 sessions with chemo and I really had few side effects. I had a stoma fitted pre treatment due to the size of the tumour, so I was very fortunate not to have the very painful toilet issues. I recovered within weeks of treatment and my life went back to normal with a stoma. I had proctitis and stricture of the anus pre treatment and that has not changed. Some of our group have had very bad issues, after effects of radiotherapy can also be very common. 

If I am offered more surgery and radiotherapy I would say yes every time. My own personal thoughts about my HPV cancer is, hopefully the chemo will contain it and stop further spread, if I am lucky it might knock it out in some lymph nodes. It's unlikely to eradicate the very tiny cancer cells that don't show on the scans and the cancer could reoccur. So more chemo, the same different, then possible reoccurrence. With immunotherapy this could look very different as your own body is fighting the cancer. I don't dismiss the idea that total remission is also a possibility. 

This cancer is so rare, metastic cancer even rarer, little recent research, hardly anything documented about lymph node involvement and the medical profession has zero protocol to follow. I can understand why the medical profession is unable to give us those clear guidelines and statistics that are often available with other cancers.

Wishing you the very best with your scan results and the journey ahead. I also hope you will post again with your progress.

Ally xx

Hello Mazzamoo2a9db3 

I am really pleased to hear that your scan results were positive.  I have absolutely no medical knowledge apart from what I have learned on here and through personal experience, but my untrained point of view would be that if there is activity in the colorectal area it is definitely not going to go away on its own.  Obviously your six month scans will give a more up-to-date picture but the Nigro Protocol, although it can be tough, is a highly successful treatment for anal cancer and lymph nodes in the pelvic region.  And we all know that no scan shows microscopic spread but if your six month scan is good and the 28 days chemo/radiotherapy is offered, I can't see any reason why you wouldn't.  Of course, this is a personal view.

And, if you are really confused about what your oncologist is telling you, it may be worth seeking a second opinion, many people do.

Please let us know how you get on.

Irene xx

Hi Ally, thank you for your detailed response, as you say this type cancer although rare seems to be becoming more common , and I guess the more cases the more they will evolve some sort of protocol, but I now understand why when I ask my consultant questions about chances of eradication , reoccurrence etc he doesn’t really give me much information even though I have complete faith in him. I guess thats why he didnt mention the possible chemo radiotherapy option at the beginning as he was waiting to see how I responded in the first three months of treatment. I was just a bit confused as it seemed to be a choice and I agree with you and Irene that of course I will throw everything at this as otherwise would always question my decision . Will update after my next scan , meanwhile 4 more treatments of the chemo to go , I was so looking forward to getting my PICC line out but he has said it would stay in for the chemo radio if I have it , hey ho what’s another few months I guess. 

Marilyn xx

Hi Irene, thank you, I agree if he offers me the choice I would definitely take it, otherwise would always question . He did say I could have a break from finishing the the 6 months of carbo / pacli at the end of May but I think I’d rather just plough on and hopefully be through everything my late summer. The goal posts keep moving but as you say positive 3 month scan results so hopefully the 6 month ones will be as well and that will spur me on .

Marilyn xx 

HelloMazzamoo2a9db3 

I am pleased that you have a rapport with your oncologist, it is so important.  And as a matter of interest, like you, I wanted to plough on with the chemo/radiotherapy but my oncologist said I needed a break and it was ten weeks until I started the chemo/radiotherapy.  But if you feel fine and are healthy enough (I was too) and your consultant is happy, go for it.

Irene xx

I'm in a similar position Marilyn regarding information about cure or reoccurance, no definitive information, just waiting for the 3 month scan results.

Distant sqamous metastic lymph nodes cancer is rare and I think think our medical teams find it difficult to predict. Your case is a prime example of how treatment options can become available, when response is favourable.

The good news about the chemoradiation for your main active site, is it's very well established as Irene mentioned and also very effective. 

I am keeping everything crossed for your 6 month scan and like you I would want to keep going with treatment.

Ally xx

Hi Irene, thats interesting information re the break , I’ll bear that in mind when /if there is an option , Thanks again , its good to have as much info from someone that has been through a similar situation . X

Hi Ally, yes I think its tricky when they dont really know how different people are going to respond to treatment , I think the only way to cope with this is to take it in bite size chunks and get through one course of treatment without trying to look too far ahead . Easier said than done though . Good luck with your ongoing treatment also 

Marilyn x