| Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Hi Amy, I'm sorry to read of your pathology re the positive node . Having it spill into the neck is not the best news. I have been on this board for a few years now. Non HPV oral tongue cancers are aggressive and need to be treated aggressively. Hit this hard so that you dont have to be doing this again when your options may become more limited. We live in New Zealand and our team told us that HBO would accelerate the growth of any remaining cancer cells. Certainly my reading confirmed that. Enough so that we opted not to do it. Please get a 2nd opinion from a CCC as Christine advised. Research has proven that these centres achieve better outcomes for their Patients. We have been through this twice ourselves and I don't wish that on anyone. I wish you the best with your treatments. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Amy, Im sure you have done your research to select your treatment team. You said you went for 3 opinions. Were any at a CCC?
At this time the only scientifically proven ways to eliminate SCC oral cancer is thru surgery or Radiation with or without chemo. Alone chemo may shrink the tumor but it doesnt completely eliminate it which is why chemo alone is used for palliative care.
Have you ever heard of the Quackwatch website? Quackwatch is exactly as its name implies, it publishes false medical claims. Unfortunately many of these false claims are promoted by physicians who are very convincing and make them sound enticing. Over the years of working with The Oral Cancer Foundation, Ive seen far too many good patients who follow some of the unfounded false medical advice. Sadly many of these same patients decided too late to go with conventional treatments. Here at OCF, we only promote scientifically proven methods and clinical trials done at reputable facilities. I always look out for our members and go strictly by the rules where false cures are not at all supported. I sincerely hope your physicians have your best interests in mind when making their treatment plans for you. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Amy, I have been watching your thread, and I am a little concerned. Clearly you have given this lots of thought, done some reading, and are on a path. But as someone who has talked to hundreds of patients over the last decade, I can't say that I have every seen a patient successfully treated with O2 treatments and Vitamin C. If you are like most normal people, the idea of being radiated is really scary, and heaven knows it is no walk in the park as anyone here can tell you. But it is the thing that actually works, especially in cases where the disease has already spread to the cervical nodes where it can continue on to other parts of your body. Once that happens this thing can be unstoppable. I am concerned that it sounds like you are reading naturopathic web sites and others that have not been vetted and would not stand up to the rigors of a real scientific inquiry. The web is a dangerous and wonderful place both. But figuring out which parts of it are which can be difficult.
It would also be normal human nature to try and seek out something that seemed less invasive, less hurtful to go through to get to your goal of being cancer free. I have seen people chose unproven treatments presented to them by someone who is not a trained certified oncologist by a national organization of reputation, and in the end by the time they figure out that what that person is suggesting to them is not working, it is too late to get on the right track and stop something that is very aggressive. Holistic approaches to treating cancer can be adjunctive to conventional treatments, but they have never been proven to be something that could replace them.
Clearly you can see that the people on this forum are concerned and want to be helpful, but you have to make good choices, and many of them are hard. None of us had any understanding of cancer when this came into our lives. All of us were scared, emotionally torn, and afraid of the treatments. But there is a system in the US that carefully looks at what works in different cancers to resolve them and what does not. Respectfully, I am concerned that you are being seen by someone who is not part of that certified oncology community and they are suggesting things to you that may not have the positive outcome that we all hope you have after you dance with this devil of a disease. Most importantly everyday that you do not engage in treatments that have a proven documentable track record, the cancer gets strong and harder to eliminate.
I would be happy to talk to you personally if you like, see that you get referrals to other cancer centers that have stellar track records of beating this thing that can be documented, anything that you wish. I hope that you will consider that sometimes the easiest pathway, may not be the most successful pathway.
I hope you believe that this posting which I have refrained from making for awhile, comes from a place of care, concern, and desire to see you have the best possible outcome. I think what you are choosing, and what is being said to you by whomever is treating you is not going to be effective. I hope that you will give any of us here, and me specifically, an opportunity to help you get alternative opinions from people you can trust. With those alternative ideas, perhaps you will chose a different path while there is still time to do so. With concern and love. Brian
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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