Need some encouragement

I was diagnosed with squamous cell cancer, unknown primary, in December of 2010. At the time, my PET CT scan showed a spot on the liver that was suspicious. A subsequent liver biopsy was negative, so the decision was made to do radiation. I had 33 sessions of radiation, and it was assumed I was cancer-free. My first three-month post-radiation PET showed that the spot on the liver had gotten bigger, and the next liver biopsy turned out to be positive for SCC -- it had obviously been there all along and had already metastasized. After seven rounds of chemo (carboplatin and taxol), I had a liver resection done at Sloan-Kettering. The pathology report was good -- they had gotten it all. Now, three months later, my CT scan (with contrast) has shown enlarged lymph nodes in the kidney area (pelvic/abomindal). I will have a biopsy done on July 16th. I point-blank asked my oncologist what his gut told him, and he said he thinks the cancer is back.

My question is: Has anyone else experienced anything similar? Is it possible the nodes could be enlarged for some other reason? I have not had a UTI recently (that I know of), so that was another reason he said he thinks it's cancer again.

I am trying to hold onto hope and to be positive. It has gotten me this far, and as you all know, it's been hell -- lost 35 pounds, sick as a dog through the radiation (throwing up from day one -- unable to eat anything from February through May -- even liquids made me sick), lost my hair during chemo, but did a whole lot better with it than radiation (not sick from it) -- the whole nine. You've all been there, done that, thrown away the t-shirt. The oncologist said if the nodes are positive, it'll mean more chemo. I don't know if I'm happy with that. I wonder if radiation might be more effective.

I would appreciate any and all input. I am more upset now than I have ever been throughout this ordeal -- believe it or not,I haven't cried once -- not even now, but I am THISCLOSE to it.

Thanks, everyone.

Comments

  • ratface
    ratface Member Posts: 1,337 Member
    I have heard every word
    you said. Quite the ordeal you have been through and it's still not over. I don't think crying will hurt anything, why don't you let it loose. Is there anyone you can cry with, a partner, a friend, a counselor or clergy person. If you are in the Sloan Kettering area why don't you inquire at the hospital about a head and neck cancer group meeting. I attend a monthly meeting here in Chicago and there are folks in the group at all stages of disease and treatment. It would be a very positive experience for you. Tell me what area you are in and I'll see what I can find for you. There are people in these groups who are on similar journeys with good insight. Keep posting here regardless.
  • katenorwood
    katenorwood Member Posts: 1,912
    keep positive thoughts !
    deedee54,
    I don't have the answers you are looking for, but I want you to know I'm thinking of you and hoping everything turns out positive for you. I agree we all should have a support group close to home to talk with and share information with. And trust me I have let loose more than once with the tears. It's o.k. ! Hugs and warmest regards, Katie
  • Billie67
    Billie67 Member Posts: 898

    keep positive thoughts !
    deedee54,
    I don't have the answers you are looking for, but I want you to know I'm thinking of you and hoping everything turns out positive for you. I agree we all should have a support group close to home to talk with and share information with. And trust me I have let loose more than once with the tears. It's o.k. ! Hugs and warmest regards, Katie

    Points
    Deedee,
    I'm sorry you are having to deal with this. I wish I had some answers for you. The only thing I can tell you is tuis, you don't get any extra points for not crying, I say go with it and don't deny your urge to cry and get it out. You may want find a support group in your area, I think it would help a ton!
    I pray you will get some news you're hoping for. So sorry I can't give you a hug.
    XOXO
    Billie
  • deedee54
    deedee54 Member Posts: 7
    ratface said:

    I have heard every word
    you said. Quite the ordeal you have been through and it's still not over. I don't think crying will hurt anything, why don't you let it loose. Is there anyone you can cry with, a partner, a friend, a counselor or clergy person. If you are in the Sloan Kettering area why don't you inquire at the hospital about a head and neck cancer group meeting. I attend a monthly meeting here in Chicago and there are folks in the group at all stages of disease and treatment. It would be a very positive experience for you. Tell me what area you are in and I'll see what I can find for you. There are people in these groups who are on similar journeys with good insight. Keep posting here regardless.

    Need some encouragement
    I am in upstate New York, Ulster County, ratface. Thanks for the suggestions. I will see if there's something up here -- I'm sure there must be.
  • deedee54
    deedee54 Member Posts: 7

    keep positive thoughts !
    deedee54,
    I don't have the answers you are looking for, but I want you to know I'm thinking of you and hoping everything turns out positive for you. I agree we all should have a support group close to home to talk with and share information with. And trust me I have let loose more than once with the tears. It's o.k. ! Hugs and warmest regards, Katie

    Need some encouragement
    Thanks so much, Katie. I'm just afraid that if I start crying, I won't stop! Right now, I feel it's important to be as focused and clear-headed as possible.
  • deedee54
    deedee54 Member Posts: 7
    Billie67 said:

    Points
    Deedee,
    I'm sorry you are having to deal with this. I wish I had some answers for you. The only thing I can tell you is tuis, you don't get any extra points for not crying, I say go with it and don't deny your urge to cry and get it out. You may want find a support group in your area, I think it would help a ton!
    I pray you will get some news you're hoping for. So sorry I can't give you a hug.
    XOXO
    Billie

    Need some Encouragement
    Thanks so much, Billie. Going to a support group did cross my mind at the beginning of all this, but then, I was so sick from the radiation, I didn't think about it again. With chemo, I seemed to be tolerating it so well, again, it didn't seem important. However, I think now's the time. It helps just posting here and getting people's thoughts. You've all been through this, or are going through it, and I really feel you're the only ones who can truly understand it all. Hugs all around!
  • hwt
    hwt Member Posts: 2,328 Member
    deedee54 said:

    Need some encouragement
    Thanks so much, Katie. I'm just afraid that if I start crying, I won't stop! Right now, I feel it's important to be as focused and clear-headed as possible.

    Sending prayers your way.

    Sending prayers your way.
  • ratface
    ratface Member Posts: 1,337 Member
    hwt said:

    Sending prayers your way.

    Sending prayers your way.

    some contacts to start with
    Hi Deedee, these will all be SPOHNC contacts or "Support For People With Head and Neck Cancer" It is a national support group for just our type of cancer. 1-800-377-0928, www.spohnc.org. I would encourage you to just get on the phone and call around as they have their fingers on resources available other than their own, even if you might not be close enough. Here are some NY contacts and I'm not that familiar with the upstate area, but just call one of these and they will help you. At the very least they could find a cancer group somewhere near you even if it's not head and neck as there are many such groups meeting throughout. The group setting has really helped me deal with many aspects of this disease, give it a shot.

    NY-Rochester
    Strong memorial
    Sandra Sabatka, 585-276-4529

    NY-Stony Brook
    Denis staropoli 631-682-7103

    NY-Syosset
    Alice Steiner 516-764-1571

    NY westchester
    Mark Tenzer 914-584-6151
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Let It Rip....
    Welcome DeeDee....

    I think everyone here can relate to you and your situation in one way or another....

    Sometimes a good cry works wonders in moving on and self medication...so let it rip.

    I'm sure others will provide you with their stories and words of encouragement.

    We have a thread here we call the SuperThread. It's a compilation of many good links and bits of information we have gathered over the years;

    SuperThread

    Hopefully it can provide you information that you might seek on other topics as well.

    Thoughts and Prayers,
    John
  • deedee54
    deedee54 Member Posts: 7
    Skiffin16 said:

    Let It Rip....
    Welcome DeeDee....

    I think everyone here can relate to you and your situation in one way or another....

    Sometimes a good cry works wonders in moving on and self medication...so let it rip.

    I'm sure others will provide you with their stories and words of encouragement.

    We have a thread here we call the SuperThread. It's a compilation of many good links and bits of information we have gathered over the years;

    SuperThread

    Hopefully it can provide you information that you might seek on other topics as well.

    Thoughts and Prayers,
    John

    Need some encouragement
    Thank you all for all your suggestions and comments. I am so grateful. I will be looking into those support groups, too. It's such a comfort to talk to people who are going through this. I will be praying for all of you.
  • ditto1
    ditto1 Member Posts: 660
    deedee54 said:

    Need some encouragement
    Thank you all for all your suggestions and comments. I am so grateful. I will be looking into those support groups, too. It's such a comfort to talk to people who are going through this. I will be praying for all of you.

    I think I saw Ditto crying
    yea I admitted spillling a few tears and as a 56 year old man in another post, not real proud of it. But the folks on this site knew where I was at, and thats why we are here for you. So dd54 if you are possibly facing a second round of the Beast you have every right to cry, scream, shout what ever. But that aside I believe I have read it both ways on these blogs about 2nd RADs being used. Im only on my 14th RAD next monday and 5 more Erbitax chemos, already had 2 Cisplatin 21 days apart. So I waiting to get thru my 1st treatments. Either way whether you seek out a support group or use this blog or both, what ever helps you, go for it. I know many of us pray everynite for folks dealing with this and you will be in those prayers. Goodluck and keep us updated. Ps I had BOT with multiple lymphnodes. What a ride.
  • Deacon_INC
    Deacon_INC Member Posts: 1
    deedee54 said:

    Need some encouragement
    Thank you all for all your suggestions and comments. I am so grateful. I will be looking into those support groups, too. It's such a comfort to talk to people who are going through this. I will be praying for all of you.

    I am praying for you DeeDee
    I am preparing for my battle which starts on Monday I am a 45 year old male non-smoker non- drinker stage 4 tonsil cancer. I know this will not be easy but I truly believe that God will get me through this and the more faith with prayer I believe this will at the very least take away the fear. Good luck and God bless you DeeDee :-)
  • Tim6003
    Tim6003 Member Posts: 1,514 Member

    I am praying for you DeeDee
    I am preparing for my battle which starts on Monday I am a 45 year old male non-smoker non- drinker stage 4 tonsil cancer. I know this will not be easy but I truly believe that God will get me through this and the more faith with prayer I believe this will at the very least take away the fear. Good luck and God bless you DeeDee :-)

    Hi DeeDee ..
    Sorry so late in responding to your post..don't know how I missed it ???

    I will say this, if you have not cried once during your ordeal (wow, what an ordeal too) ..then you are certainly stronger than me....I am in awe. That same mental state will serve you well going forward it things turn out to be worst case scenario,though I do agree with others, crying ain't a bad thing, at least I hope it is not :)

    I stopped and said a prayer for you deedee before I finished my post. I ask for strength of mind (you seem well equiped there but did note you were "this close") and healing of your body from cancer.

    Hope that was okay ....and I do pray the lymph nodes will not be cacnerous and I do pray they are just swollen and the doctor is incorrect in his concern (and I bet he would be happy to be wrong in this situation).

    We are with you DeeDee ....and we truly care!!

    Best,

    Tim
  • Crazymom
    Crazymom Member Posts: 339 Member
    You can do it
    You can make it through this. We have all cried and it is ok if you want to cry. This is a tough road, but it is a road that can lead us to a cancer free future. Keep believing that you will beat this thing. A positive attitude will help you, even though at times it is difficult. I am not positive all the time, but am trying hard to keep a good attitude. You are going through another difficult time, but this will pass and easier times hopefully are in front of you. I am praying for you. I know it is hard, but we can do this! Ann