Does prognosis change??

caregiver99
caregiver99 Member Posts: 27
in Head and Neck Cancer #1
Hello all, my girlfriend, Natalie was diagnosed with stage 4b NPC last July. Docs told us her 5 year survival is around 35%. She done with her treatment last November and was declared NED on her first post treatment PET scan. Based on her NED result, does that change her prognosis? She has always been healthy and I was shocked when I was told about her survial rate. This has been stuck with me since and whenever I see her I am deeply saddened that she may not live more than 5 years.

Comments

  • kdwers
    kdwers Member Posts: 16 Member
    #2
    Hello, I have asked the same
    Hello, I have asked the same basic question but the dr told my husband 10% 5 year survival, due to liver spread at diagnosis. Hope some survivor can answer us. I know how you feel .
  • Marty36
    Marty36 Member Posts: 84
    #3
    Survival rates are a tricky,
    Survival rates are a tricky, deceptive thing. 35% is based on a lot of factors. How many of that 65% were much older, much sicker to begin with, got other illnesses, etc. If the average age of diagnosis is 63 y.o., for instance, than a five year survival rate has to be viewed in light of a life expectancy of about 75. If you are only 45, then you have to consider age and previous health in looking at those 5 year survival rates.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #4
    Not
    survivors do not walk around with numbers, we are not percentages. the wonderful new that NED is in her life each and every day. maintaining a positive mental attitude and believing that NED will not go away is very important. it's like when the weatherman says there's a 35% chance of rain in 5 days and you caring an umbrella with you all the time where ever you go, it's not the best thing to do.

    16 years ago when i was told i had cancer they said making the first year is huge, when that happens 5 years becomes the goal for watching and follow ups to be less. when cancer show up for the second time 13 years later they actually said this is not a reoccurrence because it had been so long, now they will continue to watch me closely for another two years.

    Natalie has been uplifted with the news of NED and recovery continues on the way to her new normal and learning to live with the new normal. Congrats to Natalie.

    Congrats to you and thank you for being there for Natalie, having a loved on be there for one going thru the fight makes for a stronger fight. help her by believing all will be fine and it will be fine.

    john
  • RogerRN43
    RogerRN43 Member Posts: 185
    #5
    35%
    In other words, if they are correct, 1 in 3 are still around in 5y. Have hope, she could very well be that 1.

    I remember reading from the Oral Cancer Survivor Forum, 80% of recurrences occur in the first year, 15% in the second year; therefore 2 years of NED is a statistical milestone.

    At Stage 4, an active tumor may release thousands of cells into the body via the lymphatics. It is up to the person's immune system to clean these up and not have any stick to vital organs. I believe if no cells have seeded outside the H&N area, and the initial locoregional treatment is successful, that is the first step to surviving, eradicating the initial disease. The seeding of distant mets is an important factor because we know for the most part, chemo is not curative, radiation is, and only the H&N area is radiated.
    From there, it is again up to the person's immune system to prevent new primaries from developing.

    HPV+ SCC is more responsive to treatment because of susceptible genetic factors as opposed to smoking-related SCC which have different genetic factors within the tumor cell more resistant to treatment. That plays into eradicating the initial the disease after treatment ends.
    That said, I've read of a person who started out HPV+/N1, mets to the lungs within a year, passed away. I have a friend on facebook, 12y out Stage 4, says she still occasionally breaks down and has a smoke. My dad had an NPC patient survive for 15y. You just never know.

    Best to ignore stats. The most important person to Natalie to survive is herself, to believe in it, and to maintain a healthy lifestyle.

    All the best for your friend and continued NEDs.
  • ekdennie
    ekdennie Member Posts: 238 Member
    #6
    depends
    I asked my doctor about survival rates for any cancer and he said to ignore the numbers, ignore the percentages. the reason being that every day treatment options are changing, there are better and more successful treatments, so what may have been a 35% success rate a few years ago could be much higher now, but the data hasn't been compiled yet. plus, sometimes when you read the fine print on some of the studies it makes you wonder why they are even published. my favorite was for my type of cancer (Mucoepidermoid carcinoma). I was reading a publication to try and learn the survival rates. I was getting so depressed with all the numbers i was reading. it seemed like no one was living for more than 10 years and I was barely 31 at the time I was diagnosed. then I read the fine print at the end of the paper...one of the *'s for the survival chart. it said that the data was collected from a group of people who were between 65-85 at the time of their diagnosis and treatment. that of those who had passed by the 5 year mark, only one had done so due to the cancer and/or treatment, by the 10 year mark only two (including the one from the 5 year mark), the rest had died from old age or accidents! yet when I looked at the numbers it seemed like such a low percentage lived past 10 years! it was very misleading.
    so my advice is enjoy her NED status...enjoy each day you have with her now...don't worry about what the docs said then...and at her next appointment, just ask if their stats still stand...she could be part of that 35%...someone has to be! :) huge hugs!
  • HAWVET
    HAWVET Member Posts: 318
    #7
    ekdennie said:

    depends
    I asked my doctor about survival rates for any cancer and he said to ignore the numbers, ignore the percentages. the reason being that every day treatment options are changing, there are better and more successful treatments, so what may have been a 35% success rate a few years ago could be much higher now, but the data hasn't been compiled yet. plus, sometimes when you read the fine print on some of the studies it makes you wonder why they are even published. my favorite was for my type of cancer (Mucoepidermoid carcinoma). I was reading a publication to try and learn the survival rates. I was getting so depressed with all the numbers i was reading. it seemed like no one was living for more than 10 years and I was barely 31 at the time I was diagnosed. then I read the fine print at the end of the paper...one of the *'s for the survival chart. it said that the data was collected from a group of people who were between 65-85 at the time of their diagnosis and treatment. that of those who had passed by the 5 year mark, only one had done so due to the cancer and/or treatment, by the 10 year mark only two (including the one from the 5 year mark), the rest had died from old age or accidents! yet when I looked at the numbers it seemed like such a low percentage lived past 10 years! it was very misleading.
    so my advice is enjoy her NED status...enjoy each day you have with her now...don't worry about what the docs said then...and at her next appointment, just ask if their stats still stand...she could be part of that 35%...someone has to be! :) huge hugs!

    I would not place too much
    I would not place too much emphasis on survival rates. There are many factors, different agencies or time period for the rates. If you google search NPC survivor rates, wikipedia would give a 73 percent chance. ACS indicated about 35 percent based on statistics before year 2000. I looked around at the rates during my time frame and it was not good.

    I am a NPC survivor and had about 9 weeks of radiation treatment. I started some intensive chemo (had to be hospitalized overnight) about a month from first radiation and got very sick. Had another one a couple weeks later and told the oncologist to stop.

    I do not know what level nor the type of chemo/radiation treatment it was. I do know that I signed a waiver for direct radiation implant for lymph node which came about two months after radiation. I had to be hospitalized with six needles on my neck for two nights. I did not resume chemo and focused on alternative methods.

    I think if she remained positive and be determined that she will beat this disease (with some prayers in between), she will be around. My last treatment was in June 1998 and it was at least two years later that I received the NED.

    Edited to add: Plus, I am one of the oldest on this board.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #8
    Here's kinda how it works
    I totally agree with what's already been said. The numbers you were quoted are deceptive, for a number of reasons, and right now they are not accurate in her circumstances.

    If I were to tell you the average life expectancy in the US was 78.3, you would immediately see there were some conditions to that statement. 78.3 is a number that applies to the average of both sexes, and ONLY at the moment of birth. For men, it would be a different number than for women. If I were to tell you that was the life expectancy for someone already age 70, you'd suspect I'd given you a wrong number. Without looking it up, the life expectancy of someone already age 70 is more like 90 years.

    That's the situation she's in. For SCC, at least, most recurrances happen early, not late. The numbers are something like this: 50% of recurrances happen in the first year, 75% by 24 months and almost all by 36 months.

    So to kind of indirectly answer your quesiton, her numbers are already better than the numbers that were quoted. Those numbers were from BEFORE therapy. And in a large group of patients with her exact clinical situation, obviously some are already in advancing disease. How much better, I don't know.

    I remember your posts from before about the extent of her disease. It is wonderful to think she is NED, and has reasonable expectations for the future. I'm sure you two weren't feeling that way six months ago.


    Best to you.

    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Stats...
    My reply to an earlier post...

    As mentioned....forget about them..

    Most of these were done at different times than now, and statistically you don't know the bulk of the median range...

    Age, physical condition going it, genetics, tobacco/alchol use...etc....

    There is way too many factors involved....concentrate on you and your husband and leave the worry off odds and statistics at the curb.

    Stay proactive, not reactive, stay positive in thought, faith, family and friends....

    Best,
    John
  • caregiver99
    caregiver99 Member Posts: 27
    #10
    Thank you!
    I am feeling much better after reading everyone's feedback. Natalie was only 31 years old when she was diagnosed with NPC and prior to that she was in excellent health. Just very difficult to digest when docs told me her survival rate was 35%, I couldnt eat for days! I felt so helpless and the only thing I could do was shower her with gifts. For the last half year I spent half of my pay checks buying her everything she never had before.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #11
    caregiver99 said:

    Thank you!
    I am feeling much better after reading everyone's feedback. Natalie was only 31 years old when she was diagnosed with NPC and prior to that she was in excellent health. Just very difficult to digest when docs told me her survival rate was 35%, I couldnt eat for days! I felt so helpless and the only thing I could do was shower her with gifts. For the last half year I spent half of my pay checks buying her everything she never had before.

    One of the biggest challenges both of you face
    is making the decision to go on with your lives. That was easy for me to say. It is much harder to do in real life.

    Wishing you both the best.

    Pat

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