HELP..doctors change their opinion about second time radiation??

hsnmp1978
hsnmp1978 Member Posts: 44
in Head and Neck Cancer #1

Both doctors change their opinion about second time radiation??

So both of my husband’s doctors are suggesting to see some one at university for any clinical trials if there is any.

My husband story:

Diagnosed with stage 4 hpv originate head and neck cancer

36 radiation treatments done/ high does for Chemo done and after 3 months PAT/CAT neck dissection done and they found active cancer cells in there.

Now both radiologist and oncologist are suggestion to see someone at university for any qualify clinical trials.

Any suggestion would be helpful

My husband is only 36 year old and we live in Chicago.

Thanks

Hetal

Comments

  • luv2cut1
    luv2cut1 Member Posts: 288
    #2
    Mixed opinions

    Hi Hetal,

    I don't know where you are being treated now, but I would definitely recommend going to the University got explore options. My husband was treated for stage 2 scc of epiglottis in 2008. 6 weeks of radiation plus once per week chemo for six weeks. Cancer recurred in neck in early 2009. He had radical neck dissection.  Opinions were all over the place As to further treatment. His medical and radiation oncologist said no more radiation. The ENT who did the surgery pushed for a second opinion. Second opinion said they would do the radiation, but side effects would be very debilitating. They also said chance for a cure was minimal without radiation. We finally went to the University of Colorado. They encouraged radiation and said while the side effects could be debilitating, they thought they could do the radiation successfully and my husband could have a good quality of life. We decided to do the radiation again. Full dose along with once per week chemo for six weeks. Four years later my husband is doing great! From our standpoint, the University had many more options at its disposal, and their confidence gave us the confidence to make the scary choices. No matter what you choose to do, I wish you the very best. I remember all too well what being in limbo was like. 

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #3
    Hospitals

    Hi Hetal,

    This is discouraging I know but hang in there! Your best bet is dealing with a CCC and Chicago has two Nationally ranked centers. Norhwestern Memorial is ranked #14 and the University of Chicago Medical Center is ranked #31. They would be privy to the latest technology, treatments and trials that are available. If travel is an option then the options are greater. I was treated at Johns Hopkins which is #1 for Head and Neck cancer. I can't speak highly enough of my team and the treatment I received. My RO and ENT/Surgeon are some of the very best in the country. PM me is you'd like more info, names etc. 

    Here is a link to the top cancer hospitals in the country.

    http://health.usnews.com/best-hospitals/rankings/cancer

    My thoughts and prayers are with you. 

    "T"

     

     

     

  • bjohn
    bjohn Member Posts: 20
    #4
    mixed opinions

    Hello   I remember when my husband had a reoccurance a year out, we also needed a second opinion.We went to the University of Chicago and wish we would have started there. He sees several docs in different departmets and we are happy with all of them. Best of luck. Also, all large hospitals have a second opinion phone # which makes it easy to get the appointments quickly.  Best of luck.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Hi Hetal

    If I remember right with me it had something to do with bone mass being able to take radiation twice to the same area. I was told there are only a small 2% of people who can. Give me a ring.

    Hondo 

     

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #6
    Radiation

    Getting another opinion at a bigger cancer center is the way to go.  But I note in your other post, that you said your husband had or finished radiation in March 2013 and that could be why his doctors are saying no to a second round so close to the first.  Radiation is the gift that keeps giving and could be that the new radiation would do more damage than the first so close together.  My husband finished his first round of 35 radiation treatments in October 2010 and finished his second round of 35 radiation treatments in July 2012.  His cancer reoccurred at the same spot and they said no more radiation.  They worry about the cartoid arteries and the spine and he was being treated at Emory Cancer Center.

    Sharon

  • jim and i
    jim and i Member Posts: 1,788 Member
    #7
    At his age he should try

    At his age he should try until someone gives him the second radiation.

    Praying for you both. Debbie

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #8
    Where were the new cancer cells found?

    Sorry, I'm still not clear on the situation.  Was it that there were positive nodes on the neck dissection?  Or was there another area that was biopsied and found to contain cancer, not related to the nodes?

  • hsnmp1978
    hsnmp1978 Member Posts: 44
    #9
    luv2cut1 said:

    Mixed opinions

    Hi Hetal,

    I don't know where you are being treated now, but I would definitely recommend going to the University got explore options. My husband was treated for stage 2 scc of epiglottis in 2008. 6 weeks of radiation plus once per week chemo for six weeks. Cancer recurred in neck in early 2009. He had radical neck dissection.  Opinions were all over the place As to further treatment. His medical and radiation oncologist said no more radiation. The ENT who did the surgery pushed for a second opinion. Second opinion said they would do the radiation, but side effects would be very debilitating. They also said chance for a cure was minimal without radiation. We finally went to the University of Colorado. They encouraged radiation and said while the side effects could be debilitating, they thought they could do the radiation successfully and my husband could have a good quality of life. We decided to do the radiation again. Full dose along with once per week chemo for six weeks. Four years later my husband is doing great! From our standpoint, the University had many more options at its disposal, and their confidence gave us the confidence to make the scary choices. No matter what you choose to do, I wish you the very best. I remember all too well what being in limbo was like. 

    Thak you

    Thanks for your input and we are seeing dr next week at univercuty of chicago.

    Thansk,

    Hetal

  • hsnmp1978
    hsnmp1978 Member Posts: 44
    #10
    fishmanpa said:

    Hospitals

    Hi Hetal,

    This is discouraging I know but hang in there! Your best bet is dealing with a CCC and Chicago has two Nationally ranked centers. Norhwestern Memorial is ranked #14 and the University of Chicago Medical Center is ranked #31. They would be privy to the latest technology, treatments and trials that are available. If travel is an option then the options are greater. I was treated at Johns Hopkins which is #1 for Head and Neck cancer. I can't speak highly enough of my team and the treatment I received. My RO and ENT/Surgeon are some of the very best in the country. PM me is you'd like more info, names etc. 

    Here is a link to the top cancer hospitals in the country.

    http://health.usnews.com/best-hospitals/rankings/cancer

    My thoughts and prayers are with you. 

    "T"

     

     

     

    Thanks

    I will keep this infor in mind and will make decision after we see dr at univercity of chicago.

    Tahnks for your massage.

    Hetal

  • hsnmp1978
    hsnmp1978 Member Posts: 44
    #11
    longtermsurvivor said:

    Where were the new cancer cells found?

    Sorry, I'm still not clear on the situation.  Was it that there were positive nodes on the neck dissection?  Or was there another area that was biopsied and found to contain cancer, not related to the nodes?

    hi

    tehy found more cancer cell when they did neck dissection.

  • sin9775
    sin9775 Member Posts: 199 Member
    #12
    hsnmp1978 said:

    hi

    tehy found more cancer cell when they did neck dissection.

    Second Opinion

    I am so sorry you and your husband have to make this kind of decision.  What side of Chicago are you on?  If you live on the North side, checking out the Cancer Center of America, in Zion, Il wouldn't be too bad of a drive at all

    for a second opinion, and perhaps even treatment.  I will pray that you will find your way to the right decision.

    ~S~

  • GavinP
    GavinP Member Posts: 118
    #13
    sin9775 said:

    Second Opinion

    I am so sorry you and your husband have to make this kind of decision.  What side of Chicago are you on?  If you live on the North side, checking out the Cancer Center of America, in Zion, Il wouldn't be too bad of a drive at all

    for a second opinion, and perhaps even treatment.  I will pray that you will find your way to the right decision.

    ~S~

    I'm sorry your in this situation...

    It's terrible that your husband is in what should basically the prime of his life and he (and you) are facing this terrible situation.

    I'd say,

    1. You need to find out if they are saying no to second dose radiation forever or just for now - As has been stated already, it could just be that they want some "recovery time" before doing any more.

    2. Whatever the answer to point 1 is, going to a hospital that specialise's in H&N cancer/treatment sounds like a good idea to me - I'm from the UK and don't know much about the US health care system, but I suspect theres a lot more avenue's open to you than we would have here and given your husband's young age you should explore ALL those avenue's if you can.

    All the best and keep us posted however it turns out.

  • bjohn
    bjohn Member Posts: 20
    #14
    second opinion

    Hello Hetal     I do believe the University of Chicago is known for head and neck cancer.

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