recurrence article

Options

After posting my 6th month NED earlier this week, a fellow warrior snt me an article on a recent study which tends to indicate the great majority of recurrences occur within the first 6 months.  Always, a concern particularly when the battle is so fresh in my mind and still recovering, but this article was comforting having hit my 6 month mark.  My ENT also told me yesterday during my exam, once I hit one year my chances of it never coming back are at 90% and over the next 4 years your earn the last 10%.  Good luck to the current warriors in the battle, it will soon be over and life will get back so "new normal".

Tony

http://www.medpagetoday.com/MeetingCoverage/MHNCS/56281?xid= 

Comments

  • SylMarie
    SylMarie Member Posts: 91 Member
    Options
    I am too fresh out of surgery

    I am too fresh out of surgery (June 30) to see this as encouraging yet. Congrats to you, though, for making it to the 6-month mark with NED. May you continue on this journey successfully!

    This is scary for me to read while still healing and now getting ready to meet with radiation oncologists at two major cancer centers up north to get treatment plans for rads. I'm one to always over-think, over-research, and get more than one opinion. It is just one thing after another, isn't it? After diagnosis, it doesn't stop. One huge stressor, after another. The idea of taking one day at a time is challenging for me, but I have to change my perspective. We have to remember to keep breathing.  :)

  • wmc
    wmc Member Posts: 1,804
    edited August 2016 #3
    Options
    Interesting artical

    This is referring to HPV+. What I have seen here is not that much in the first six months, but more in the 3 to 4 year mark. We have had several that have had recurrences.  HPV+ responds much better to treatment but has a chance of it returning. There is so much they are still learning about all cancers but even more so with Head and Neck as it covers so many areas. What I have seen here is many need radiation and chemo and it is one rough ride, but when they get to the end of that long tunnel, they start their recovery which can take some time, but they do so well. I would guess in the last close to 3 years for me, I have seen hundreds all get through it and doing good. You can get some effects from the radiation and where you were treated matters too. Don't get real concerned with numbers or odds. According to the ACC, I had Stage 3 SCC supraglottic cancer and I have 53% survival rate for 5 years. Another was more general and gave me 60%. 

    I have bad lungs and my coworkers were always scared as I would go gray color and had to stop work because I was coughing blood. It got worse before they found where it was from and they found the tumor. They could not even do a biopsy because they were afraid they could not stop the bleeding, and I was in a hospital.  I was given two options. Have my larynx removed, or do nothing as I would not survive surgery or radiation.  I had the surgery and have been NED ever since I woke up from surgery. Yes having your voice removed is life changing, but I have a life to change. I can do almost everything I did before and have a prosthesis in my throat that allows me to have a new voice. You see if you give it your all, you create your own odds. I was back at work in 10 weeks and my job was mostly talking to the crew member and on the phone. Heck, my breathing got so much better they are not talking about removing 30% of both lungs.  This sounds strange, but I will live longer because I had cancer. So what are my odds of survival, my guess is around 80% +.  My COPD is worse, but I ride my bicycle 15 miles every day. I rode 3100 miles last year. And to think, only five people ever thought I would survive, and that is counting myself and wife and doctor. My brother and son never thought I would make it. I knew I would be fine. Odds are just something to be broken.

    Bill   Oct 2013

  • cardoza33
    cardoza33 Member Posts: 81
    Options
    wmc said:

    Interesting artical

    This is referring to HPV+. What I have seen here is not that much in the first six months, but more in the 3 to 4 year mark. We have had several that have had recurrences.  HPV+ responds much better to treatment but has a chance of it returning. There is so much they are still learning about all cancers but even more so with Head and Neck as it covers so many areas. What I have seen here is many need radiation and chemo and it is one rough ride, but when they get to the end of that long tunnel, they start their recovery which can take some time, but they do so well. I would guess in the last close to 3 years for me, I have seen hundreds all get through it and doing good. You can get some effects from the radiation and where you were treated matters too. Don't get real concerned with numbers or odds. According to the ACC, I had Stage 3 SCC supraglottic cancer and I have 53% survival rate for 5 years. Another was more general and gave me 60%. 

    I have bad lungs and my coworkers were always scared as I would go gray color and had to stop work because I was coughing blood. It got worse before they found where it was from and they found the tumor. They could not even do a biopsy because they were afraid they could not stop the bleeding, and I was in a hospital.  I was given two options. Have my larynx removed, or do nothing as I would not survive surgery or radiation.  I had the surgery and have been NED ever since I woke up from surgery. Yes having your voice removed is life changing, but I have a life to change. I can do almost everything I did before and have a prosthesis in my throat that allows me to have a new voice. You see if you give it your all, you create your own odds. I was back at work in 10 weeks and my job was mostly talking to the crew member and on the phone. Heck, my breathing got so much better they are not talking about removing 30% of both lungs.  This sounds strange, but I will live longer because I had cancer. So what are my odds of survival, my guess is around 80% +.  My COPD is worse, but I ride my bicycle 15 miles every day. I rode 3100 miles last year. And to think, only five people ever thought I would survive, and that is counting myself and wife and doctor. My brother and son never thought I would make it. I knew I would be fine. Odds are just something to be broken.

    Bill   Oct 2013

    You are a warrior Bill.

    You are a warrior Bill.  Always enjoy your posts.

  • Barbaraek
    Barbaraek Member Posts: 626
    Options
    Cardoza - I am a glass half full person

    so I find this article extremely encouraging and I thank you for sharing it. But I have also seen hanging around on the board here, re-occurences after that timeline, notably Laralyn and Phrannie (two of my heroes). For my husband and I, the plan is be optimistic, enjoy everyday and be grateful for it while keeping a weather eye out for a sudden storm.

    Barbara

  • MGC
    MGC Member Posts: 72 Member
    edited August 2016 #6
    Options
    HPV

    Great article and thanks for posting. I am 6 plus years post SCC, BOT, HPV+ also. I asked my treatment team if i was all clear after 5 years like they told me I should be a few years back. They informed me that more recently they have been seeing some HPV re-occurences as far out as seven years. I guess I have 1 more year to go but I am confident. I have plenty of side effects consuming me anyway;-)

    This info came from the Stanford H & N cancer center fwiw.

  • Laralyn
    Laralyn Member Posts: 532
    Options
    There is new evidence coming

    There is new evidence coming in that HPV+ head and neck cancer can have distant metastasis after the traditional "probably all clear" mark of two years. Mine recurred at the 3.5 year mark. There is also some debate over whether this is a recurrence/metastasis or a new HPV+ lung primary, but ultimately that doesn't matter because appearance of HPV+ SCC in the lung 3-7 years after initial head and neck treatments is beginning to come onto oncologists' radar.

    Be diligent in your anti-cancer regimens and scans. Request lung screenings--insist on them. It can be as simple as a chest X-ray but a CT is better. Take your screenings all the way out to the 7 year mark, too.

  • armana
    armana Member Posts: 97 Member
    Options
    wmc said:

    Interesting artical

    This is referring to HPV+. What I have seen here is not that much in the first six months, but more in the 3 to 4 year mark. We have had several that have had recurrences.  HPV+ responds much better to treatment but has a chance of it returning. There is so much they are still learning about all cancers but even more so with Head and Neck as it covers so many areas. What I have seen here is many need radiation and chemo and it is one rough ride, but when they get to the end of that long tunnel, they start their recovery which can take some time, but they do so well. I would guess in the last close to 3 years for me, I have seen hundreds all get through it and doing good. You can get some effects from the radiation and where you were treated matters too. Don't get real concerned with numbers or odds. According to the ACC, I had Stage 3 SCC supraglottic cancer and I have 53% survival rate for 5 years. Another was more general and gave me 60%. 

    I have bad lungs and my coworkers were always scared as I would go gray color and had to stop work because I was coughing blood. It got worse before they found where it was from and they found the tumor. They could not even do a biopsy because they were afraid they could not stop the bleeding, and I was in a hospital.  I was given two options. Have my larynx removed, or do nothing as I would not survive surgery or radiation.  I had the surgery and have been NED ever since I woke up from surgery. Yes having your voice removed is life changing, but I have a life to change. I can do almost everything I did before and have a prosthesis in my throat that allows me to have a new voice. You see if you give it your all, you create your own odds. I was back at work in 10 weeks and my job was mostly talking to the crew member and on the phone. Heck, my breathing got so much better they are not talking about removing 30% of both lungs.  This sounds strange, but I will live longer because I had cancer. So what are my odds of survival, my guess is around 80% +.  My COPD is worse, but I ride my bicycle 15 miles every day. I rode 3100 miles last year. And to think, only five people ever thought I would survive, and that is counting myself and wife and doctor. My brother and son never thought I would make it. I knew I would be fine. Odds are just something to be broken.

    Bill   Oct 2013

    Thia article does not imply the recurrence rate to be zero after 6 months, it simply ststes most recurrences ocur within the 1st 6 months. Based on my observation on this and two other cancer forums, the majority of recurrences happen within the 1st two years. Both my RO and head and neck surgeon told me the chances of recurrence 2 years post treatment is about 5%. These stats are only for HPV positive cancers.