My husband has completed 16 chemo taxol/ Carpoplatin & lacks 4 more rads for a total of 35. His RO says he has 90% success rate 5 years out. What are your thoughts on this? It seems like everyone on here has had a reoccurance. His cancer is squamous cell carcinoma, BOT, right tonsil, lymphs involved both sides, HPV 16. Both ENT Oncologist & R O are happy with his progress.
I have been viewing these posts since diagnosis in Oct & they have been very helpful. Thanks for any opinions, etc & I am so sorry any of us have to be here.

HPV, mainly HPV-16 is in the oropharyngeal, has different biology than HNSCC usually caused by tobacco and alcohol. As such, HPV has better response to treatment, and prognosis, but most prior studies, statistics do not include this fact, and just bundle all HNSCC, oropharyngeal cancers wether HPV or not, together, but will separate them in the future. I heard of up to 50 percent improved overall response rate, so each stage is different. There are other factors involved in recurrences, mainly the tumor size, it's location, nodal involvement, extracapsular extension, and other factors, and unfortionatly do happen, but everyone is different.

Good luck with the rest of the treatment, and recovery, and it's a good sign if the doctors are happy.

Hi, vik vik
none of us have a crystal ball to see the outcome. There will always be some worry of a recurrence, but from all the survival data I have looked at for HPV+ cancer, statistically, these are my key benchmarks to dial back my worry monitor:

1. After completing therapy with the doctors happy
2. After about 3 months, there will be some sort of scan
3. A year out of treatment
4. Two years out of treatment
5. Four years out of treatment

At this point, other age related issues and simple dangers such as driving on a freeway or eating sushi are as much as or more worrisome (statistically, not emotionally) as the possibility of a recurrence.

Remember that many of the people on this site complete their treatment, and go on their merry ways with no recurrence.

You and your husband are well on your way to the first benchmark, completing treatment with the doctors happy. This is an important benchmark, and I hope you will dial back the worry.

Best wishes,
Maria

vik, most members do NOT have recurrences! You may see alot of discussion about recurrences here as its everyones biggest fear. Im sorry but I do not know the specific numbers, they dont really mean much to me. I am a 3 time survivor who had little chance of survival but somehow I was fortunate enough to make it thru my 3rd round which was Stage IV. What I have learned over the years is pretty cut and dry, you will either make it or you wont and you will either get a recurrence or you wont. Living life worrying 'what if' will not do you any good. After the mental trauma of battling oral cancer, its pretty hard not to wonder and be concerned about it returning. Worrying about 'what if' it will not change anything at all, it will just steal your time away from you.

You may see many members that are the most active are the ones who have lived thru a recurrence. That isnt a true representation of the recurrence demographics of oral cancer. If you must look at numbers, I think the rate of recurrence is only about 25% of patients who are Stage III or IV for the first 2 years after treatment. So many things go into what the recurrence odds are that its hard to figure out where exactly your situation falls in the numbers game. You may find more recurrence members on the forum due to the fact that the one timers are busy out there living life. They pop in from time to time but many of the single round members arent daily users of the forum. They have recovered and returned to their old lives. Most of the recurrence members will have after effects and other ailments which they will discuss on the forum while also providing assistance to newer members. By helping others it is a great way to focus on the good that you can do instead of worrying about your own problems.

It sounds like your husband is doing very well and has a good prognosis of getting rid of his cancer. Thats the best that can happen! Take it day by day and time heals all wounds. Hang in there, things will improve and one day you will look back at all of this just like ti was a very bad dream.

Good luck!

Vik

What Christine said. Bear in mind that none of us with these recurrences who are posting are dead, are we?. Having the cancer come back is FEAR number ONE. It never goes away, but speaking strictly for myself, I post even if it scares newcomers because I want to show there is hope no matter what. Plus I like to think it cheers people up to think: gee, it could have been as bad as Charm's or Eric's or Christine's or Paul's or Kelly's etc etc.instead of comparing themselves to those who never get cancer.
Charm

Hi,
Kevin is now about 16 months out of tx. So far so good. We do think about recurrence now and then. In the beginning we were fixated on it. What you are feeling and the worry is totally normal and understood.
There are MANY people on these forums who have not had recurrences. I wish I could think of names. The only one that comes to mind quickly is Davidcpa. His dx was very similar to Kevin's, so we are praying for the same outcome.
I know how hard it is, and no matter what we all say you are going to be terrified for awhile, but please try to relax a little bit. The success rate for HPV+ is pretty positive! We are counting on that!
Hang in there!!
Kathy

My husband was diagnosed January 2009 with HPV+ "base of tongue" cancer. John remains cancer free and life is great!

It has been my experience with most health based message boards that once people are through the experience and no longer have "issues" they move on and don't post.

Vik, keeping calm sounds so easy on paper at least. I would concur with what everyone is saying recurrence in this community has been a relatively small percentage from a mere statistical perspective although not to those experiencing it. Try hard to not focus on that and take the time to MAKE THE MEMORIES! This is so important in life in general but much more important in cancer world. Keep on living with cancer instead of living in spite of it. Enjoy every moment you can.

I see you are in TN. I hope you go to Vandy as my first otolaryngologist is now the Director over HNC!

Ed

vik
I am one of those survivors that comes back and lurks once i awhile, but only posts occasionaly. My main reason is that although i was grade IV my treatment went pretty smooth. My main concerns were fatigue and starting to eat real food again. I saw some of the issues others were having on this site and i felt like i was doing pretty good. I think you will find that most of the 'OC activists' either had a hard time with their initial cancer or had a recurrence.

Christine is right. Most survivors get on with their lives after treatment and recovery. The questions i can answer are low hanging fruit, PEG, radition burns, fatigue and what to try to eat first. But, most of the 'regulars' on this site know those answers too.

It's been four years for me and i'm doing fine. I had base of tongue with lymph node involvement and no surgery.

It seems that since i've gone through this i've been introduced to someone who's had it, or had someone ask me to call someone who's got it, or told me about a friend who had OC or was diagnosed with OC at least a dozen times. None of them have had recurrences and all are alive. I met a pastor at a Christmas party and was talking to him about it and he showed me what was left of a neck dissection scar and said he had OC almost ten years ago.

People who have cancer DO have recurrences, but I don't know anyone other than the people i've met through this group or at the OCF marches that have had recurrences.

Vik

Let me chime in once again, that one of the most frustrating things my wife finds is that when she goes to one of the oral cancer support groups sponsored by our local hospitals, there are zero patients with a recurrence. They are all one and done

We are just over represented here on the forum by a major statistical margin
Charm