Anyone with SCC HPV+ NOT have chemo or had alternative treatment

SCC +HPV Base of Tongue and Nodes of Neck

SCC +HPV Base of Tongue and Nodes of Neck Stage T1N2. My Dx was done at a major metro university hospital. On my initial scans they prescribed 7 weeks chemo and radiation plus a biopsy of the tongue. I declined all treatment and started Gerson Therapy. This week I had a six month scan and the cancer is not spreading and not getting bigger. Now they are prescribing surgery only. Chemo and radiation has been removed from the prescription. I will not proceed with the surgery and will continue Gerson Therapy. The doctor said the scans look about the same, so I am not sure why they took chemo and radiation off the table. I know they say the HPV type is highly treatable. So maybe their standard of care has changed or maybe it is just specific to my case.

With HPV+ diagnosis there is

With HPV+ diagnosis there is a good chance of cure. I was told you get one shot at cure, and if it returns, you are not considered curable, so much as treatment is then aimed at containing it ( though it could be cured, I suppose but probably much harder and morbidities worse). I am stage lll, had surgery, chemoradiation (radiation one side as primary was on that side, too). Radiation oncologist says his stats show 13% increased locoregional cure rate since chemo added; chemo oncologist said he agreed. It's a tough course of treatment but I guess you have to ask yourself what your treatment goal is and how comfortable you are with it.

CivilMatt said:

welcome

Riveter,

Welcome to the H&N forum, where radiation, chemo and surgery are used successfully to treat cancer.

You say you declined all treatment.  Did you have a biopsy which tested positive for SCC?  The scan showed areas of activity, are these areas of known cancer?

The Gerson Therapy is not recommended by very many main stream oncologists.  Your use of this treatment regime appears to be paying huge dividends.  I wish you continued good fortune.

HPV+ SCC is highly treatable, but the wise move would be to proceed with caution and not take anything for granted.

Matt

Biopsy

I had an excision biopsy of my neck because I had a big lump. That was my sign that there was a problem. Additionally, I had tooth pain on that left side where I have a root canal tooth. It had been painful for months. The biopsy showed SCC with HPV. I had a PET Scan which showed uptake in left neck nodes and left base of tongue. The Oncologists prescribed chemo and radiation. I declined treatment. For 5 months I have been on a plant based diet, organic juicing, coffee enemas, castor oil enemas, pancreatic and other enzymes, dessicated liver, potassium supplementation, vitamins and minerals, and no salt, sugar, meat, oils, or packaged foods. And after my latest PET Scan the Oncologists are no longer recommending chemo or radiation. And the tongue tumor is maybe about 1mm in size because it does not show up on the CT Scan. I guess that is the resolution of the CT. My tumors are not growing or spreading. Would this have been the case if I had done nothing? I don't know. I have been stumbling around in the dark looking for answers. But I think my Cancer is a chronic metabolic disorder with possible epigenic influence. And I felt like I caused my own Cancer through poor lifestyle and diet. And I feel like my body can heal it if I correct the deficiency and toxicity that I caused myself.

I respect everyone's Cancer treatment choices. We work with the information we have available and what our fear level can tolerate. But in my case I was more afraid of treatment than I was of Cancer.

 

Another opinion from a survivor...

Hello KW,

I was scc hpv+ stage IVa with primary in right tonsil and 2 nodes involved diagnosed August 2015. I got treatment opinions from 2 hospiatls one local one speciality. Both reccomended i do the same treatment which was Surgery and chemo-radiation. The surgery was a no brainer for me get the tonsil and affected lymphnodes out and be 99.9% cancer free now. But the radiation and chemo took a little more convincing and soul searching. Ultimatley i choose to "throw the book" at it like Matt said we dont want to go light on treatment the first time and have to deal with it later down the road, so that is what i did.

I was scheduled for six week rads, 5 days per week, and six weeks chemo, by IV once per week. I made it through the first 4 weeks pretty strong but by the end of the 4th week i hit the treatment "wall" very hard. I told my doctors that i was very sick and not sure i could continue the treatment. They were very understanding and told me it was my decision and they would help and support me with whatever i decided. I chose to stop after 4 weeks, which was one of the hardest decisions i have ever made. But i knew that i had hit my limit and that i wasn't giving up but that i had done the best i could. The next 2-3 months were a slow and difficult recovery but after that things got better and better. It has been over 2 years now since i stopped my treatment and i have had 4 clear scans, praise God, so i am very happy to say the least.

Some doctors now are actually prescribing the 4 week chemoraditaion treatment that I recieved but it all depends on your staging and individual situation. If i could go back would i change anything in my treatment... no i dont think i would because i belive i got exactley what i needed to be free of this deadly disease.

At the end of the day from a medical treatment perspective, one of my lymphnodes showed extracapsular extensions, which basically means the cancer had gotten outside the lymphnode capsual. That was the determining factor for me on wether or not the doctors thought i needed chemo. If that had not shown itself through the pathology i would not have recieved the chemo but since it was present they did reccomend.

Every choice in this process is unique to the individual and your situation and it is also an impossible task to know what is the exact best route to go since none of us have a crystal ball that tells the future.

Best of luck to you in your treatment, recovery, and new life to come.

Jake...

riveter said:

Biopsy

I had an excision biopsy of my neck because I had a big lump. That was my sign that there was a problem. Additionally, I had tooth pain on that left side where I have a root canal tooth. It had been painful for months. The biopsy showed SCC with HPV. I had a PET Scan which showed uptake in left neck nodes and left base of tongue. The Oncologists prescribed chemo and radiation. I declined treatment. For 5 months I have been on a plant based diet, organic juicing, coffee enemas, castor oil enemas, pancreatic and other enzymes, dessicated liver, potassium supplementation, vitamins and minerals, and no salt, sugar, meat, oils, or packaged foods. And after my latest PET Scan the Oncologists are no longer recommending chemo or radiation. And the tongue tumor is maybe about 1mm in size because it does not show up on the CT Scan. I guess that is the resolution of the CT. My tumors are not growing or spreading. Would this have been the case if I had done nothing? I don't know. I have been stumbling around in the dark looking for answers. But I think my Cancer is a chronic metabolic disorder with possible epigenic influence. And I felt like I caused my own Cancer through poor lifestyle and diet. And I feel like my body can heal it if I correct the deficiency and toxicity that I caused myself.

I respect everyone's Cancer treatment choices. We work with the information we have available and what our fear level can tolerate. But in my case I was more afraid of treatment than I was of Cancer.

 

interesting treatment... and a thought...

Riveter,

First let me say sorry you are having to deal with this ugly disease. I really appreciate your taking the time to post about your situation and your unique treatment. I am like you I respect everybody's choice for treatment, because its our life and we are the ones that have to live it.

Like you many of us stumble around in the dark looking for answers and there are not many to be found. Its all alot of guessing and hoping. Modern medicine provides statistics and they give us some comfort but in reality statistics aside you are either going to beat this cancer and live or not beat it and die. So we are really in an all or nothing situation.

One thing I would like to encourage you on is that i do believe a healthy diet and excercise can make a big difference on wether or not we get cancer in our life. But having said that through my own experience, research, and discussions with my doctors is that once a cancerous tumor is present in your body a healthy diet and regular excersize alone will not eliminate it.

I think this is a very important and critical distintction to make.

The things we can do to prevent illness and disease are not necessarily effective to cure illness and disease. 

I support you 100% in your choices for treatment but i do want to encourage you to keep an open mind if your cancer progresses and take agressive action quickly.

Best to you and please keep us posted because personally i would love to hear this diet you have chosen for treatment has worked and you become cured from this terrible disease. 

jake...

Rads/Chemo

I really hope that alternative treatments, such as the above mentioned Gerson Therapy, one day prove to be wildly successful. But I don't believe there is the scientific evidence that shows this at this time.

I was SCC stage IV for BOT. Surgery was not an option for me due to the location of the cancer. I was given a choice of rads only or rads with chemo. The inclusion of the chemo would increase the chances of a successful treatment, as it was explained to me. For me, it wasn't a difficult decision. I didn't want to be sitting there after treatment to find the cancer was not gone and regretting the fact that I should have opted for the chemo when I had the chance. I went for the rads/chemo treatment. Seven plus years later I have no doubt that was the correct course of treatment for me. Cheers!

And so yet another

And so yet another alternative treatment thread.  Once again I suggest reading up on the saga of Steve Jobs, CEO of Apple, who, with billions of dollars to spend on apricot pit treatment, managed to turn his very treatable Pancreatic cancer fatal.  People living on a solid Kale diet miss a major point when they report their turmor [seems to have] shrunk - this very treatable +HPV cancer metastasizes to very untreatable forms in parts of the body where the sun don't shine, and no number of photos from a camera stuck in your mouth will alter that.  

I was +HPV SCC Stage III, N-1, M-0.  My very competent oncologists knew they would win when they saw the M-0 because they have pretty much a 100% win record with that.  I knew I would win because I picked them.  My seven week treatment regimen left me with saggy skin on my neck, a problem dealing with the taste of some cheap wines, and a lifetime supply of sugarfree gum.  I'll take that over the risk of lung/brain/esophageal/thyroid cancer pretty much any day.

riveter said:

Biopsy

I had an excision biopsy of my neck because I had a big lump. That was my sign that there was a problem. Additionally, I had tooth pain on that left side where I have a root canal tooth. It had been painful for months. The biopsy showed SCC with HPV. I had a PET Scan which showed uptake in left neck nodes and left base of tongue. The Oncologists prescribed chemo and radiation. I declined treatment. For 5 months I have been on a plant based diet, organic juicing, coffee enemas, castor oil enemas, pancreatic and other enzymes, dessicated liver, potassium supplementation, vitamins and minerals, and no salt, sugar, meat, oils, or packaged foods. And after my latest PET Scan the Oncologists are no longer recommending chemo or radiation. And the tongue tumor is maybe about 1mm in size because it does not show up on the CT Scan. I guess that is the resolution of the CT. My tumors are not growing or spreading. Would this have been the case if I had done nothing? I don't know. I have been stumbling around in the dark looking for answers. But I think my Cancer is a chronic metabolic disorder with possible epigenic influence. And I felt like I caused my own Cancer through poor lifestyle and diet. And I feel like my body can heal it if I correct the deficiency and toxicity that I caused myself.

I respect everyone's Cancer treatment choices. We work with the information we have available and what our fear level can tolerate. But in my case I was more afraid of treatment than I was of Cancer.

 

No No No

You do not understand. Your tumors are not growing or they are shrinking is not the goal.  Conventional chemoradiation therapy kills the tumor eliminating ANY uptake indications on the PET scan.  As long as the tumors live they are likely spreading the cancer throughout your body-at some point the PET will show this and the next step is hospice-and shortly thereafter you will be able to discuss treatment choices with other Gerson advocates!  Please-anyone reading this thread-do not choose a nearly certain very painful death.  Drink your coffee-not in a enema.

Alternative treatment

I hesitated for a long time to reply to this thread (and in particular to Riveter), because I don’t know to a great degree of certainty what the truth is.

Nevertheless, I feel compelled to also present what I think, maybe that will help others to decide.

First of all, you are not alone, thinking how damaging the standard treatment for cancer is, and to be much more afraid that the treatment might kill you, before the cancer does. That’s certainly true.

There are a few things to consider, in my view:

Firstly, there is a well-known fact, that early stages (like in your case T1N2) SCC +HPV Base of Tongue is highly treatable, with a very high success rate. If the treatment is done correctly, and if the staging is indeed correct (i.e. it did not spread above loco-regional), the cure rate is very high (around 90% or even higher, depending on the treatment center). The treatment itself is very tough, with permanent side effects, fact.

Secondly, the fact that the tumor did not spread (even if decreased a bit) is not in itself a good thing. The tumor in the primary location is continuously shedding “free” cancer cells in the lymph and blood. These cells went through many division cycles, and suffered many mutations. Given the opportunity, they can home in a very different area, (i.e. metastasize), and start growing a micro tumor. These are not visible with the current imaging technology, and they need time to grow (probably a couple of years) to a volume that allow to be “visualized”.

Thirdly, the Gerson (or any other alternative) therapy is not proven (in controlled clinical trials) to be effective. Whereas the standard treatment is proven, with known failure and success rates. It doesn’t matter how “scientific” the mechanism of action (of the alternative treatment) is explained, if that has not been proven in a controlled environment.  

Fourthly, if the standard treatment would have failed, or the staging would have been much higher, the discussion would have been perhaps very different.

And to a final note, addresed to Riveter: you have already decided to go through this path. It was your choice, I respect that (I was very close to follow this path myself) and some of the above thoughts are no longer applicable to you. I wish you good luck with your current treatment, and I hope you keep us posted.