Found my Main Vampire - thought how cute - until I googled it. Not my best idea.

[Dee58]

Hi,  I call it my main vampire because in movies you have to find and kill the head/main Vampire character in order to kill the vampires he made.  In my case, my secondary cancer was found in my swollen neck lymph node... and the PET scan I had yesterday came back today already and the main villain, the primary cancer, is in my tonsil.  Tonsil cancer.  How cute that sounds, I thought... not as scary as some of the other cancers you hear about.  Until I googled it.  So enough about that...

The ENT surgeon office just texted me to say the PET scan found the primary cancer in my tonsil and he would discuss it at Sir Charles Gairdner Hospital with someone on Monday and let me know.  His office also said they expected it would be treated with radiotherapy.

So I'm assuming that as the word surgery wasn't used, they WILL just use radiotherapy?  Why not just take it out?  If I had tonsillitis they'd take it out... cancer is surely worse than tonsillitis and they want to leave it in?  Why do they do that?  And what about this huge lump (very swollen lymph node) on my neck?  Does that get zapped too?

Anyone with tonsil cancer and cancer in their lymph node who can share their experience  would be appreciated.  Is radio therapy alone successful for these?

Thanks... and sharing prayers for all of us because this just isn't very nice, is it... I'm going to meditate and "white light" all of us tonight! xxx

[Elisabeth]

Hi, I could say I had a similar experience, an autoimmune disease (swollen parotid glands) and ended with swollen lymph nodes nearby. I was so unaware of the swollen lymph nodes and so used with the swollen parotid glands. I knew was nothing to be done, autoimmune diseases are not treatable, just live with it, if you can. When a GP noticed the additional swelling in my neck, I did the investigations and found out that I had lymphoma. One lymph node was removed for the biopsy. The treatment was the radiotherapy. Great success. I am doing well 4 years later. I am back to my normal. Definition of normal for me means I am alive, struggling with the destructive effects of the autoimmune Sjogren Syndrome. Good luck with your treatment, I am positive you will get through the treatment easily. Positive thinking is 50% treatment.

[Dee58]

Thank you so much Elisabeth... I hope you get a miraculous if not cure of that syndrome then massive relief...I'm a great believer in miracles happening 🙂  

I'm having surgery tomorrow.  They are taking out the primary cancer but leaving the secondary which is in my lymph node... I think they plan to zap that with radiation and I'm a bit worried about the side effects of that too... 

Prayers for miracles for both of us!

x

[Elisabeth]

Hi Dee, probably you are recovering from the surgery now. I hope everything went well. The battle with the vampire just started. Good luck!! 

[Dee58]

Yes I’m home now. They took out both tonsils but he said he couldn’t get the rest of the cancer and didn’t touch my lymph node either.  He said to get to the rest of the primary cancer would require sawing through my jaw bone and opening up my face and he used his hands imitating opening up a book, to reach it... so he said he would leave that drastic surgery as the very last option and he was arranging chemotherapy and radiation therapy but he was hopeful they would get it.   So I’m banking on his positivity that they will work... rather lose my hair than lose my life ... or my ability to talk or eat for that matter!  I’d like to know what happened to that cancer cure that was discovered some 30 or so years ago and a large pharma company bought it and I remember a news reader saying how now since a big pharma company had bought it they would be in a position to manufacture it big time and save a lot of lives.... but then it got buried and we never heard about it again.... and I keep seeing posts that there is no money to be made in curing cancer and I wonder.... 😞

[OzStu]

Don't worry to much Dee.  I had pretty much same thing except they never found my primary but they knew it came from somewhere in my mouth throat.  They just hit everything from my ears down to collar bones with radiation as well as chemo.   I'm a year out next month, and so far so good.   I had 35 rad treatments and 7 cisplatin.   It is  pretty rough to get through but I made it without any hospital stays and I hardly used the feeding tube they fitted in my stomach except for the last week of rad, and for about a week after.   My saliva production is less but I don't suffer from dry mouth except for when I wake up, probably from having my mouth open while sleep.  And apart from that it's just when I eat dry food like crackers or bread with no marg  and things.   The surgery to remove the lymph node cancer is not as successful as the radiation and chemo combo,  and they can't just take the nodes they find cancer on in the scans, because small clusters of cells don't show on the scans and so they have to take all the lymph nodes and a bunch of the tissue around them........this also has side affects, and usually end up having the radiation and chemo anyway to clean up anything missed by the surgery.    You'll hear about a whole lot of nightmare late onset side affects that can come on as much as 10 years after radiation.........not everybody gets them, and most people who do get them don't get all of them, and much can be done to minimize them as well.   In any case it is far better then the alternative.   Stay strong, think positive, and when the going gets rough,  just keep telling yourself, this is temporary......it will be over soon.   xo