by skynet on Mon Jul 04, 2011 10:40 AM
The survival rates quoted are very good and seem to be confirmed on this message board.My son is still worried about his Mom,a year out now after stage 4n2b.Does anybody know of a sufferer who has not survived or has had a recurrence? I'm talking only of HPV cancer,but it does seem survival rates are incredibly good and I have told my son not to worry ,apart from a lack of saliva she is back to normal.
by Oudave83 on Tue Jul 05, 2011 01:23 PM
HAPPY DAY AFTER JULY 4TH......i CAN STILL HEAR SOME OF THOSE FIREWORKS RINGIN IN ME' HEAD.....
...I think that the overall survival rates of all head and neck warriors is quite good, with HPV positive a % or extra scoop better.....like all cancers, each year of survival over the 5 years increases your chances, so if your cancer was HPV positive and survive the initial 2 years without recurrence, the odds, I believe are over 90%...... Jeff etc would know better than I...
But you know what.......
Faith, trust, hope, a charitable and forgiving heart, optimism and courage have no percentages and are entirely dependent upon me and you each morning when the sun rises and each evening when the sun sets....
We pray and remember those who have fallen fighting for each of us and those who continue to fight on the front lines against the Big Bully with a small c others call Cancer.
You can win your fight warriors...round by round..day by day......the Big Bully with a small c can take nothing from us that we don't freely give him or neglectfully abandon.....
Hope y'all had a great 4th and an even better week,
You are n my prayers warriors....
ps...I think my 5 year survival rate is better than my Cleveland Browns..........
by ErthWlkr on Wed Jul 06, 2011 02:08 PM
I'm still here - so my survival rate is 100%! :)
by nwwoman on Wed Jul 06, 2011 11:38 PM
Darn, I sure wish we were in this group of survivors. I just don't understand what is the dif between the survivors and those who aren't, particularly if they both start out in good health, except for the head/neck SCC. My husband was told he had a great chance of NED when he finished treatment this past January. He "only" had one malignant node, very small, in his neck. He had a tumor on his tonsil that they removed. Twelve weeks later, he had 21 nodes on his lungs. Twenty one! And now, his prognosis is poor...6 to 9 months. You are SOOOOO lucky. I just don't understand why this happened to him.... guess no one does..
by skynet on Thu Jul 07, 2011 10:10 AM
I am sorry to hear that,I guess you are talking of an HPV related tumour.This is what I would like to find out.Is my wife in the calm before another storm or is the probability that she is cured?From Dave it would seem the percentages point to the latter but my son is still worried. One of the mysteries of this disease is why some seem lucky but some like your husband are definitely not.My wife is over a year out from treatment and she did not have surgery on the tonsil ,only surgery to remove two lymph nodes.
Her oncologist appeared more concerned about her ability to survive the treatment,than surviving the disease itself.
by GoldDustWoman on Thu Jul 07, 2011 07:16 PM
Hi Skynet ~
My husband is only about 4 months out of treatment for HPV tonsil cancer so I guess technically I can't yet say he's a survivor. But you know ~ we both KNOW that he will be. We both believe that all things happen for a reason, and sometimes people get cancer because they're time here on earth is done. We both know that his reason was a different one, and we are constantly focused on what we learned from the experience, what we have to give to others, and how we'll continue to grow because he went through this. I think there is great power in positive attitude. I'm not saying it's a cure, and I'm certainly not suggesting that people are not cured because they don't have a positive attitude. But at the same time I think that that moving forward with the absolute belief and faith that cancer will not return is a very powerful thing. That combined with the right lifestyle choices is all we can do to protect ourselves.
Our oncologist and our radiation oncologist both told my husband that this cancer would not kill him, jokingly adding "but you're going to think we're trying to kill you with the treatment." They say that reoccurance of hpv based tonsil cancer is very rare - and they really don't yet know why. Our doctors told us that Mark was more likely to get thyroid cancer from the radiation than he was to have a reoccurance of the original cancer. And by the way, he started treatment at stage 4.
You are right, this disease is a mystery in so many ways. And I think the power of our minds over our bodies is a mystery that we will never have answers to. So surround your wife with positive thinking and talk - she is cured and you will have a long life together - that's just the way it is. Tell your son the same. Make sure she's always thinking that way too. We don't know what kind of power it has, and at a minimum it certainly can't hurt.
Much love to you and your family ~ and here's to your many future years with your healthy wife! GDW
by mark5004 on Wed Jul 13, 2011 01:57 PM
This could really be a constructive post to help people form fundamental assumptions about how to view the condition from a long term lense, and to know whether to be vigilant, or not. Many of us have only have anectdotal evidence to present (which has some value), but others collect real empirical data or have extensively studied the issues which now should be brought forward.
Skynet has asked us, "Do I need to worry about my son's mother?" He also communicates that the patient is Stage 4b. (a sizable primary, with presence regional multiple nodal disease) I believe my ENT surgeon would be highly vigilent in wanting to monitor the patient's condition. The initial treatment outcome, at only one year out, is not fully known.
In reality this message board is saturated with the feel good expressions of many and that is great, but not when someone is asking for information. The consequence is that a new poster, like Skynet will be distracted from the problems he should focus on and lose confidence in this message board as a source of information. While the feel good clap-trap has a place on the board, make attempt to comply in satisfying the requests people, or, please start you own thread and label it "three monkeys".
This board prospers in part because the real medical literature is squirreled away on paid information sites despite the fact that the studies were often funded with taxpayer funds (a different issue).
Given that NIH funded SEER outcome studies don't parse out HPV, can somebody at least provide Skynet with the basic recognized factors which are suspected as impacting HPV SCC oropharyngeal re-ocurrence?
Here is my first brush at it:
1) First not everybody survives this condition. Hidden in the SEER tables is a 8-10% death rate of those who do not survive treatment. The traditional factors affect this number, poor nutrition, lack of care, adverse reactions, suicide etc. (Skynet's spouse one year out has thankfully cleared this hurdle) The currently published 10 year SEER table for head and neck cancer for all causes combined is 19% (data from 1994-2004)
2) Effectiveness of treatment generally impacted by the selected treatment modality. i.e. Surgery, Radiation, Chemo
3) Stage of disease, not necessarily as important how many nodes, but how low the infected nodes appear in the neck.
4) The quality of the patients immune system. HPV SCC cancer is expressed more often in patients with immune system problems. HPV cancer does re-occur more often in patients with comprimised immune systems.
5) Oropharyngeal cancer is recognized as a lower outcome than some other expressions (like base of tongue) due to the nodal path being shorter supporting progression of disease.
6) While re-occurance is an uncommon outcome, at one year out, you do not yet have full knowledge of the success of the initial treatment.
Please excuse my frustration, but I don't wish to see the propogation of ignorance to the primary caretaker of cancer patient only one year out.
by skynet on Sun Jul 17, 2011 06:35 AM
Hi Mark, Thank you for your very interesting and useful reply.You are right about this message board,but it is seems the most active so I keep coming back.I'm afraid I and my family are not religious and I am keen to find out as much as I can from other peoples experiences without getting into the emotional and spiritual side of peoples suffering.This site could do so much for propagating facts and probabilities to give us lay people an idea about where we are going with this disease, so I keep plugging away and eventually get a really good response as yours is.
I guess you have some link to oncology and I thank you again.In the coming days I will review your previous posts.
by kruckbingo1 on Tue Jul 19, 2011 04:48 AM
Wow! Did not have any significant invasion in the nodes. Now I am a worried. Cancer is a weird, horrible, unpredictable disease.
What the heck is NED.
by kruckbingo1 on Tue Jul 19, 2011 05:01 AM
I like your attitude. This disease is a crap shoot!
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