Your experiences?

Hi TRE423, Welcome to the group. That really is a lot to take in and decide what to do. There are many on here who have had surgery/ RT/ Chemo, including myself. I had both tonsils removed and then 30 RT sessions and 5 out of 6 chemo full days, this is pretty much the usual treatment plan. As for side effects, there are many, but you don't get them all, we are all different, so people are affected by the treatment differently, they can be treated with medication, and they don't last too long. It is a worry to think what you are having pumped into your body, but very often it is the only choice. I am about 6 1/2 years post treatment now, back to living my life, as many others are on here, it is a hard thing to get through, but it's all doable and your husband will get through it, whichever way he goes. Stick with us, and ask any questions you have, we're all here to help. 

Hi TRE423  and welcome

It's a tough decision.

My base of tongue cancer was inoperable. I had six weeks radiotherapy, recovered really well after the few intense weeks of treatment and am alive and kicking over five years later.

I would have had everything suggested thrown at me to stay alive if my quality of life could have been preserved.

One of our other forum members RadioactiveRaz should be along soon. Her cancer was more advanced than mine and her affected lymph nodes too close to vital organs and she too was inoperable but is fighting fit with me after seven weeks CRT nearly six years later

There are long term effects of radiation, particularly, that we have to be aware of so we have to make adjustments to our lives but honestly they become second nature and of little consequence.

I can't advise you on what to do but I put my faith in my oncologist and went with the RT. Most people seem to end up having it surgery or no.

Good evening TRE23, like old biker i had surgery, radio, and chemo but mine was for the floor of the mouth followed by two other surgeries because it returned, to be honest, if surgery can be done then go for it followed by a course of chemo and radio if needed. Most of us on here have had radio/chemo and physically and mentally we are all ok with good cure rates, Nobody knows what side effects or problems we face along the way but your husband will be well cared for and treated by a well-trained team who deal with these issues every day. I was 48 when I got my first cancer but i was just unlucky that it returned aged 49 and 50, I'm now 64 and living a happy life, and became a grandad 18 months ago so I have no regrets about having the necessary surgery and treatment. It all sounds daunting at the moment but together your husband will get through it, taking one day at a time. All the best,take care.

                                                                             Chris x

Hi TRE423,

Sorry I am late to the party with advice.  First thing is read my bio to see what my journey has been like.  There are similarities to your husband, but also differences.

In essence I went down the surgical route, twice.  Both times I did not have RT or chemo, instead keeping it for a time when it was needed.  4 years later I did need the RT and chemo and it has done the job.  My view is that if there is no detectable cancer post surgery then why waste the one shot RT.  Having it post surgery may have kept me totally cancer free.  I don't know.  What I do know is I had 4 years of a great life prior to RT/chemo and now that I am recovering I am leading a very good life once again.

Thank you.  I read your story and am glad you are ok. I'm interested in your decision not to do cisplatin. Honestly it didn't seem like my husband's oncologist was even willing to budge on him needing less treatments if he responds well.  As of now his neck disection is Thursday. He is very very frightened to go under the knife. Than you for your info and support

Thank you so much

Thank you.  I feel like i know you already from all your post replies. 

TRE423 said:

Thank you.  I feel like i know you already from all your post replies. 

Do let us know how it goes. We, all of us here, have so much in common. What a party we could all have. A get together to beat all 

Being concerned is natural.  Let him know that I found both my dissections quire easy to recover from although, just like for RT, it can be a long haul to get the final recovery in place.  My scars are almost invisible and 2 weeks after the first dissection (and the cancer being confirmed) I flew to Florida and went swimming with manatees amongst other things!

Hi sorry i’m late to the thread we were flying home on Friday and I missed the link from Dani. I’m six years post treatment for right side tonsil cancer with  7 affected lymph nodes including one or two that were quite near my spinal cord which couldn’t be operated on as that says I’m alive and kicking I have 35 radiotherapy and two of a planned three treatment is hard. Surgery wasn’t an option for me, but I’m still here . Would u do it again u certainly would. Side effects we don’t get them all and what we do her can be managed. If I had lymph node involvement  that could  have been operated knowing what I know I would still have gone for chemo radiotherapy just my opinion as I do know a few who have still needed it later . 

Asked to what could happen to any  us 5 to 10 years down the line we don’t know what would happen tomorrow we have one life just live  it and have the treatment thot your consultant that you trust the most  I trusted my oncologist implicitly hec said it would cuse  me they said it would take me to the lowest place illness wise  I’ve ever been and did both.

Hazel