Did anyone NOT do radiation despite being advised to?

Tough choice....I was HPV16+... Chemoradio for me....felt that I had no choice, knew it was going to be a hard slog... not going for it is a judgement call that only you can make ....get all the professional advice available before doing so...

Take care

Peter

Helen. Take a deep breath and don't panic

Helen Ann said:

Diagnosed stage 3. They want me to do radiation to mop up any residual cells that “might” be left behind. 

I'm not a doctor but my advice is based on my experience. At stage three I would want to throw everything at it and that includes RT

Helen Ann said:

I feel like I am being forced into a lifetime of misery.  I can suffer pain for the months it will take, it’s the life afterwards! 

Whoever told you that you face a lifetime of misery? I do hope it's not Google.

I am six years clear of radiation to the back of my tongue and throat and to both sides of my neck. Apart from reduced saliva (but not drastically...it just means I have to take care of my teeth) I am very well. 

I have been here for six years and have seen hundreds of patients come and go. Most of us here are very well. The vast majority of others stay while they need help and leave to enjoy perfectly good lives.

HPV negative cancer responds well just like HPV positive but has you know recurrence rates are higher 

Helen Ann said:

It also is very very high PLD1 (90)

A PD-L1 score of 90 is a very high level of expression and it suggests a higher likelihood of  responding well to immunotherapy should the cancer recur....... So that is actually good news.

Of course it's a tough decision but for me it would be a no brainer

Good luck and hugs

PS. I've just taken a look at your past posts.

You had a flap reconstruction and neck dissection. Have another chat with Stephanie. She was the same and she opted for RT too. Most tongue cancer is HPV negative ( it's oropharyngeal cancer that originates in tonsil tissue that is positive). Stephanie has contacts on young tongues who opted out and got ill again.

Helen Ann said:

it’s the life afterwards! 

I Finished Chemoradio for Tonsil cancer HPV16+ in June 2023...yes it was tough going ...treatment and recovery..

October 2023 we went on a luxury hotel break, started swimming again, playing golf...Tenerife later that month...have been on numerous sunshine breaks since...just back from Benalmadena....Treatment stops, life has a new normal, we adapt...and spend money quicker!!!!

It's posts like this that gives me positively and encouragement to get through to whatever the treatment throws at me. 

Booked the Luxury hotel break pre treatment to give me a target to work towards...Dunhill Cup Pro-Am at Carnoustie...spurred me on, I was determined to make it...Got loads of help from oncology teams

Hi Helen I had stage one tongue cancer no node spread last Feb. I had head neck dissection and tongue operation. I faced the same dilemma after my biopsy results came back . I was delighted it wasn't in the nodes as I was originally told after MRI and CT that it was in one node but thankfully it wasn't.  They got good margins but would have liked 2 mm more. I had three options with wait and watch , go back in and remove a little more at back of tongue or RT. I was so confused as to what to do but my oncologist recommended RT and that would mop up if anything needed doing so. I was so so scared and didn't know what decision to make. It wasn't HPV positive either. I discussed it with my family and they were great but it was my decision in the end. Personally I couldn't have woke up every am wondering if some cells escaped I needed to know it was moped up so I went ahead with RT. It was tough but I knew inside it was the only way I could stop myself from stressing every day about it. I'm nearly 8 months on post RT. I eat everything except spicy food, I walk every day I do 12 exercise classes per week, yoga, pilates, aerobics, weights and I'm 61. I do get dry mouth but I drink lots and deal with it.  It was hard after I won't lie but if I had to do it all over again I would to have the reassurance it was all away. Even at my last check up two weeks ago my max fax said we made the right decision doing RT. I hope you can make your decision ok. It's hard I realise that. You take care xx

Hi I will say it’s your choice but as Dani explains an High PDL is good if you need immunotherapy later.

I would go,for the radiotherapy as I would want to give myself the best possible chance of living. I’m 7 years almost and live a great life I spend 5 months a year in Southern Spain riding my bike walking and living life.

. Treatments hard but week 8 of recovery we flew to Spain for 3 weeks for my hubbys birthday I found having something to aim for spurred me on i have  dry mouth but not drastic so I manage it well I no longer need water constantly I use 1/2 a xyimelts at night and sleep 8 hours without waking for water I don’t eat spicy food but can live with that. Tonight to celebrate  my birthday we went to a Chinese restaurant  always something I can eat. I’ve seen 6  babies  born into our famiky  numerous milestone for our grandson and reached state pension age all things I wouldn’t have seen. It’s nit an easy decision but for me I woukd want to throw the kitchen sink to kick cancer in the butt. 

Any questions  ask. 

hugs Hazel 

Hi Helen. My jaw cancer was not HPV and radiotherapy was still strongly recommended to me. I had my first jaw cancer in 2013 and it responded well to the treatment and I have not had another occurrence in that area. I have had 2 more occurrences but not in the same areas. The second cancer I had another op and more radiotherapy in 2019 and again it responded well.  I am now 71 and started the cancer journey when I was 59. There is definitely a long and happy life to be had after you finish treatment.  I decided to go ahead with the radiotherapy as I wanted to give myself the best chance possible and it has worked well for me. It's not an easy road but for me well worth it. Don't stress about recurrences as mine was not atypical and the cause was quite different.

Lyn

Hi Helen Ann,

I agonised over whether or not to have radiation. Only you can decide this in the end. I went ahead with radiotherapy, but sometimes question whether it was the right decision for me. I finished treatment nearly 7 months ago, and it has affected my voice badly. Yes, I'm glad to be alive, but I find the side effects difficult.

Everyone reacts differently to treatment, so it's very hard to make a decision based on other people's experiences.

Maybe look again at the statistics: what is the chance of recurrence without radiotherapy? compared to what is the chance of recurrence with radiotherapy?

Is there any possibility of asking your oncologists for a realistic picture of the side effects you are likely to get? I found some doctors glossed over and minimised the likely side effects, whereas the specialist nurse was very honest about them.

Also, could you ask if there is any way they can modify or adjust your treatment to have fewer side effects?

I wish I had somehow managed to negotiate a lower dose of radiation, or got them to avoid radiating my larynx (as I had tonsil cancer). I would have accepted a higher risk of recurrence in exchange for preserving my voice. But it's very hard to predict or anticipate.

I have to remember I'm still at a relatively early stage of healing, so please take my comments with that in mind.

I wish you lots of luck.