Hi Busterboo

I'm sorry to hear of your husbands diagnosis.

I was diagnosed with throat cancer and did not have chemo and had 30 radiotherapy treatments.

Got the all clear now and feel great.

Treatment and recovery does bring its challenges but it has one of the highest cure rates.

I kept a blog from the getgo and have listed a link for you below which you mat find helpful.

I also started a thread on here that has over 1000 inputs. Under Living with Cancer and titled Radiotherpy for Throat Cancer ( Anchor 1707 )

radiotherapythroat.home.blog

Let me know if I can help further in anyway

Kind regards

Ian

Hi Ian

Thank you so much for your reply that has put my mind at ease a bit.

Glad to hear you are well, will read your blog, had your cancer spread to the lymph nodes though?

Thanks

Busterboo

Hi Busterboo,

As far as I'm aware there was not mention of lymph nodes but others on my thread had and had similar good outcomes.

To be honest I'm sure if your husband needed chemo , the consultant would have said so and put in as part of treatment plan.
Not all are given chemo and often patients given radiotherapy on its own for treatment, however talk it through with consultant / support team who will explain rationale behind treatment plan.

Good luck with visit to oncologist and keep me posted how you get on.

My letter said HPV virus.

Hope helps

Ian

Hi Busterboo

tbus is Hazsl I am almost 2 years post radiotherapy for tonsil cancer with several affected lymph nodes I had 35 radiotherapy sessions and 2 of a planned 3 chemotherapy sessions the 3 To was cancelled .If yiu husband has h p v 16 or 18 the curtentbthu king is no chemotherapy as the additional belt and braces effect is in the region if 3-5. Per cent given that chemo weakens the immune system with head and neck cancers due to covid -19 many patients are nit received get chemotherapy If yiur oncologist gnu js it’s necces my advise is take it they wouldn’t advise hubbybto have it otherwise .I have a blog with links to lots of other sites www.radioactiveraz.wordpress.com.

I will be honest the treatments pretty brutal recovery can be challenging but I was 61 when diagnosed a wimp but I did it .Any questions just,ask 

Hazel xx

Hi B

I shared your husbands apprehension regarding chemo. It is undoubtedly a form of poisoning with potential long term issues.. albeit with huge clinical benefits.  In discussion with my oncologist he too felt that chemo was a very heavy hammer to crack my HPV+ driven SCC tonsil/lymph node condition. Current de-escalation trials should help establish a gold standard which will reduce the negative effects of treatment. Meanwhile current treatment protocols stick to the tried and trusted methods. It remains a ‘belt and braces’ approach driven by solid data. 

I really did not want chemo (Cisplatin) based on its reputation and very much aware that its use for HPV+ tonsil cancer is under review. However I deferred to the advice and expertise of my oncologist.  We agreed to have a low threshold for discontinuing chemo and see how it went. 

Alongside radiotherapy I was to be given 6 sessions of chemo. The first session was a walk. However I felt really ill after the second. I felt like I had been poisoned and felt really bad. There were no serious clinical issues. I decided to withdraw from chemo. However, and without any intervention on my part, during my next review the oncologist told me they were stopping the chemo. 

I continued with the radiotherapy and am now 18 months post treatment with few ill effects. I am glad that I avoided the planned chemo. 

However and to complete the picture I had a bilateral tonsillecomy and modified neck dissection to remove the lymph node prior to radiotherapy. 

With hindsight I think the decision to follow the experts advice was good. My wife was keen that I should opt for the treatment which provided the best guarantee of success. I felt lucky to have escaped much of the chemo that had been planned. It really is nasty stuff. 

I gather robotic surgery is currently providing excellent results. My ENT surgeon was slightly apologetic for not being able to offer that as an alternative. It possibly offers the best treatment and avoids the potential side effects of traditional oncological approaches. 

I wish your husband well and a good resolution. 

 Paul

Thank you Hazel and Ian for coming back to me. They did want to give him chemo too,one session at the start of the radio and another session half way through but he was adamant that he doesn't want the chemo just radio as he knows chemo damages your good cells too, so I was worried that the radiotherapy wouldn't get it all and  wondered if anyone had had just radiotherapy with it having spread to the lymph nodes and got good results. Worrying times.

Thanks

 No problem ,as others have said there has been trials in the last few years if yiur husband is h op v positive the latest thinking is we have been poisoned and burnt as that’s been the tried and tested route. Maybe the gentler should option of reduced radiation and no chemo is the way forward it is your husband s choices getbthe fact sandwich figures from oncologist once the h p v factor is known ans the number let him make the decision I had 2 of a planned 3 chemo session so my lump in my neck had gone by the time my 3 rd session was due so I made an informed decision along with my oncologist and husband not to have the 3 rd one. I in fact turned the question round and said to oncologist if I was yiur wife and had got this far without major side effects ie no tinnintus no sickness what would you advise .He said I wouldn’t push it and also said if I thought yiu needed it I would insist. Fair enough. I was told on day one  on average 66% don’t take the full course. 

Hazel x 

Busterboo

Your husband has been offered radiotherapy alone to treat his (?HPV+) tonsil cancer and involved lymph node?

And no mention of surgery in addition? Single mode treatment seems rare when lymph nodes are involved. 

Hope all goes well. 

Paul

Hi, I can confirm  Hazel and Ian were a great helpto me and others. My treatment was in Spain, sugery to remove the infected node, biopsy showed HPVP16+. Treatment was 33 radio, zero chemo. It was ok, not nice but 16 months post last one i can echo others replies, it was good to avoid chemo. Best wishes.