Hi Pamela

My Love of Life, Alex, also had HPV+ve BOT and tonsillar cancer stage 4. We did not have surgery either as the team thought there would be too much structural damage done for very little gain.

Because Alex was quite young (52), they also decided to treat extremely aggressively prior with induction chemo. This approach is still a bit controversial with one camp saying it is too much treatment for not enough gain whilst the other camp believes that if you can tolerate the potential added side effects (some of them long term and permanent), the gain is worth it. I am still not sure where I sit with this having read just about every clinical trial I could get my hands on and watching Alex go through hell.

Your treatment sounds fairly standard. The NCCN Head and Neck guidelines suggest 35 radiation treatments (7 weeks at 5 days per week).

I will also echo Christine and say that the most important thing to consider is the experience of your oncology team. Someone who sees 10 patients a year can't possibly be as well practised as a doctor who sees 100.

Once the treatment has been selected, don't look back - you will do your head in if you do.

There is no absolutely right path to take although there is a well trodden one that involves a a single agent chemo in combination with radiation. Things are a little bit fuzzy around the execution of the radiation, dose of radiation, dose of chemo, type of chemo, etc. Cisplatin is the most studied chemo agent in combination with radiation and remains the standard for this reason. Others may be just as effective but are not as well studied. Radiation is most commonly 5 days per week for 7 weeks (35 treatments) but there are legitimate variations on this too - such as more daily dose for less time or less daily dose for more time. The end result is the same in total Gys(the measure of radiation) administered over the course of treatment.

Next time you are in front of the doctor consider asking the following:
1. Is this a standard treatment and if not, what is their thinking around whatever variation they have chosen?
2. Are there any other options and would the doctor please take you through what was considered and then why were they rejected (or why was your treatment finally selected)?
3. If there are options that in the doctors opinion are equal in value, what are the pros and cons of each? Sometimes doctors choose less side effects with slightly less efficacy or vice versa without asking if the patient has any preferences. A 1% increase in survival in return for a miserable 3 months of swallowing issues might be a preference for some whilst others would much prefer to avoid side effects if they see the potential gain as being negligible.

Take heart in the fact that your husband has HPV +ve cancer which responds better to treatment than other types of cancer.

Alex just passed his 3 year mark and the doctors were amazed at his immediate response (even though they nearly killed him). He is now their poster boy for success in a smoking + HPV+ve patient They were convinced he fit the profile of a smoking drinking caused cancer so didn't initially see the point of testing for HPV until they realised it was the only way to stop the annoying girlfriend clogging their inbox .