Three weeks ago it was confirmed that my throat cancer had returned after 10 years, though my GP using the present day of phone consultation to diagnose my symptoms as a throat infection and prescribed antibiotics, fortunately I see an ENT guy every year and can contact him directly, which I did and arranged an appointment, he did not like what he saw and a biopsy was arranged which confirmed the recurrence.
In the intervening three weeks I had had a bloody noisy MRI scan an a CT scan.
Today I had my first meeting with an oncologist meeting fortunately my ENT guy Andy Evans was there, a man I trust implicitly not to bullsh*t me.
Anyway it was mixture of good and bad news, the good news is I am not having surgery and I cannot have radiation as I have already reach my lifetime limit so my only option is immunotherapy with a drug called pembrolizumab if you want to Google, I certainly will, lol.
But my cancer is playing silly buggers and has gone into hiding and the symptoms I had have disappeared and it seems that I cannot start treatment until the cancer is a bit more visible.
So I will have to wait another three months for a further scan before treatment can start unless the symptoms return and if that happens then we are go. Thing is that there is only a 30% success rate so if it fails that is it and the side effects can be quite horrendous.
I was impressed with the mass of information I left the cancer centre with, my first experience information was very thin on the ground, I was also given contact numbers again this did not happen 10 years ago, in fact once you stepped out of the cancer centre you were considered your GP’s responsibility which was ridiculous as cancer is a specialist medical issue.
Not looking for sympathy posts here thanks, sh*t happens as they say but if anyone has had immunotherapy I would love to hear their experiences.
Really sorry to hear this MrFraggle…I haven’t had immunotherapy but I am curious to hear that there is a “lifetime limit” on radiation. Having had that particular treatment before, I wasn’t aware that there was a finite amount you could have. Naively I thought it dissipated from your body over time.
There is a limit to the amount of radiation an area of your body can safely receive over the course of your lifetime. Depending on how much radiation an area has already been treated with, you may not be able to have radiation therapy to that area a second time.
I should add I suffer from progressive radiation damage from the treatment I had a dozen years ago and that will not stop.
My husband had Immunotherapy it started after his chemo and radiation finished , the immnotherapy started in january 2020 and it was every 2 weeks, it goes on for a full year so it ended on New
years eve 2020 and he was told it hadnt worked .
He did have some side effects , which started a couple of months into his treatment , one needed Antibiotics .
I hope it works for you ,.
Sorry to hear this Mr Fraggle!
I have been through cancer , was treated with chemo and am still here 10 years later.
Immunotherapy is relatively new so success rates aren’t high, but my oncologist told me to remain positive as it really helps. Get info and encouragement wherever you can, because the journey may not be pleasant but it is your best chance. If you don’t get any info on here, try calling one of the Cancer Charities , because they are very good at telling you what to expect.
I chat to a school friend every week & she has incurable cancer but is still here and reasonably well 5 years later. Most people who have been through cancer understand how you feel, better than other people do, so please send me a private message if you need to talk . I found talking to others a big help!
I really wish you well and I am sure many others on here do too.
So sorry about the diagnosis Mr. Fraggle. I thought of you this morning when you said you were going for the results.
Thank God you didn’t rely on your GP’s telephone advice!!
I am sure these phone diagnosis are doing more harm than we are being told.
It sounds like you are getting more helpful information than you did last time, so that at least is good.
I wish you the very best of luck with your future care and treatment.
I am glad you can talk about it, as the worst thing I know from past issues, that keeping things to yourself is so harmful…
We seem to be a Family in recent years full of Cancers and in my daughters case she actually set up a personal friends & family only page on facebook. She had always used it regularly anyway.
.She had a lot of close friends so she is an outgoing person so it was just right for her to do that…The support she got was amazing…they could laugh and cry together and it went on for more than a year.
That is probably not what most people would want or do.
…But having support in one form or another is a good way of helping you…
I trust my ENT guy Any Evans, I am afraid my trust, as yet, does not strech to the oncologist as I did not have a particularly good relationship with my last one who was arrogant in the extreme and left me permanently disabled when it comes to swallow function.
But that said the Dr today seemed more than prepared to answer questions and provide the information I asked for.
To be honest I have yet to decide whether to go with the treatment or not. I suffered really bad side effects from the chem and radiation treatment which lasted for a couple of years and I still have issues so the question is do I want to take the risk of A) it not working and B) having to possibly contend with unpleasant side effects?
