Treatment Plans

littlemisskitty
littlemisskitty Member Posts: 35
in Head and Neck Cancer #1

Question for people. My mom and I went to her appointment two weeks ago and got things set up for her. They told us she would be going through 30 treatments with 7 chemo treatments which seemed pretty normal. They listed the amount of radiation as 60 gray to her neck and 54 to some other surrounding areas which all seemed fine. She signed the paperwork, got her calendar and we started the count down this week. On Wednesday we were told by her chemo doctor he would like to see her on Thursday and have her blood work for him changed from happening on Thursday to Wednesday due to the trouble they are having getting needles done for the blood work and IVs (the word port is being thrown around a lot by nurses and blood work people but the doctors aren't so convinced yet). So we went to the coordinator at the one office and had the appointments changed for the doctor's visits and blood work and the lady nicely printed out a calendar with the new updated times. We were reviewing the calendar and noticed there was a whole week of treatment added meaning she would have 35 treatments of radiation and 8 weeks of chemo. We were never told this. We questioned the doctor who at first said 30 then changed it to 35 after reviewing her file. He also rambled about how they upped her dose of radiation to 66 on her neck and 60 to the surrounding areas. We were told he was in charge and we feel so uneasy that he didn't even have the questions in his mind. Has anyone else ever had their treatment plan changed after treatment has started and were never told of this change? We are greatly upset by this. We are dealing with chemo and radiation and trying to think positively through this and then to have yet another curve ball thrown at us. We now have to arrange care for longer for my grandma and are greatly concerned about the fact we were never even told about the treatment plan and had to question it based on a silly calendar. 

Comments

  • corleone
    corleone Member Posts: 312 Member
    #2
    Second opinion?

    Easier said than done, would you be able to look for a second opinion? It has to be at large cancer center, don’t know how big this one is. I received 70 Gray and the initial 60 Gy looks more palliative than with intention to cure. But then why would they changed that? By the way, the 10 Gy difference is huge, in terms of side effects but also efficacy. Whatever the reason, doesn’t seem right to me; and they are not even able to provide the rationale? I wouldn’t feel comfortable about that. This would mean a delay in treatment, but a couple of months or so is no big deal, and if you think that the current team doesn’t really have a grip on the situation, would be warranted. That’s my take. 

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    All I can tell you is what my Dr. told me...

    when I first saw the RO.  He told me I'd be getting 35 treatments "maybe 3 more" depending on how it looked at the end of 35 (I did end up with just the 35).  Just saying that the number of radiation days wasn't cut in stone when I started.  I got 70 greys.  Corleone and I both had NPC (Nasalpharnyx carcinoma...behind the nose cancer), and I can't tell you if that calls for more radiation that say BOT or tonsils.  I do know it seems that NPC requires more chemo, as I had adjuvant chemo (3 more treatments after radiation was over, over the course of 9 weeks).  I can't remember if Corleone did, also.  BOT's and tonsils seem to get chemo along with radiation, and are done with it at the same time.

    I'm a firm believer in having faith in your Dr. and his decisions....knowing what I know now, I'd sit down and ask up front....'why the change in duration and amount of radiation?"  Put him on the spot, so he has to take time and talk to you.  Chances are he knows exactly why he's adjusted the treatment plan.

    p  

  • hwt
    hwt Member Posts: 2,328 Member
    #4
    phrannie51 said:

    All I can tell you is what my Dr. told me...

    when I first saw the RO.  He told me I'd be getting 35 treatments "maybe 3 more" depending on how it looked at the end of 35 (I did end up with just the 35).  Just saying that the number of radiation days wasn't cut in stone when I started.  I got 70 greys.  Corleone and I both had NPC (Nasalpharnyx carcinoma...behind the nose cancer), and I can't tell you if that calls for more radiation that say BOT or tonsils.  I do know it seems that NPC requires more chemo, as I had adjuvant chemo (3 more treatments after radiation was over, over the course of 9 weeks).  I can't remember if Corleone did, also.  BOT's and tonsils seem to get chemo along with radiation, and are done with it at the same time.

    I'm a firm believer in having faith in your Dr. and his decisions....knowing what I know now, I'd sit down and ask up front....'why the change in duration and amount of radiation?"  Put him on the spot, so he has to take time and talk to you.  Chances are he knows exactly why he's adjusted the treatment plan.

    p  

    Don't be intimidated

    I agree with Phrannie, tell the doctor you aren't understanding the reason for the change in tx and would like him to explain again. Also, tell him your concerns for the increased radiation and resulting side effects. You and your Mom should be comfortable with his answers or seek out that 2nd opinion.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    i agree with the others,

    i agree with the others, express your concerns to the doctor.  he should not have a problem answering your questions.  i will be praying for you and your mom. 

    God bless you both.

    dj

  • wmc
    wmc Member Posts: 1,804
    #6
    I do agree with all of them...

    I never had to have chemo or Radiation, bit had 86 lymph glands and Larynx [vioce box] removed. You have to have fath and believe in your doctor. I am involved in ALL dicisions being made of hao they will treat my condition, and I have to approve it as well. You have a right to know and it should be explained as well. I do hope this is a large cancer center that is used to doing this procedure often. You might ask your mother and concider a second opion. 

    Just my opion

    Bill

  • littlemisskitty
    littlemisskitty Member Posts: 35
    #7
    Change in treatment plan

    So we met with the radiation doctor's assistant today and will meet with the doctor himself tomorrow. The treatment was changed but she claims it was not really changed. I guess the way it works (if I'm understanding her correctly) is that she's getting 66 gray which means 6600 something or another. She gets 200 each hit. So she is getting normal radiation of her neck for 6 weeks with 200 a day. Then after the 30 treatments are up, she has to get another 3 treatments of 200 to just the tumor area. She said it's normal procedure to narrow down the radiation area for 3 days after radiation is 'done.' I'm not really comfortable with that but I guess it's normal? I just don't get why we weren't informed this. We were told to create something to count down. I took 30 pictures of her grand children and put them on index cards. Then I hole punched them and added them to a bulletin board I put by her bed. Everyday we turn over the index card to signal a day done and as reward she gets to see a picture of one of the two grand children. So anyway I had made this and now it's going to make me unturn over the few she has turned over already. She's really upset by that even though it's such a silly thing. Anyone ever hear of this? I guess in a way i can see it because to get to 66 gray on the tumor site you have to do that but we weren't even informed of the 66 grey part until friday a full week after treatment started. It's so frustarting. 

    And for those who ask, we went to 4 hospitals. In CT we were lucky enough to have 4 big hospitals in the area. We checked out St. Francis, Mom refused to do UConn for personal past surgery issues, Hartford, Boston and Yale. Yale was really the best. It had the best facilities, it had a team of people deciding treatment and it offered the best services. So we went with Yale because it seemed to be the best in that they had treated many. They actually had a head and neck section in their library with two specialists of the head and neck area. They did IMRTs and IGRTs and honestly they made us feel the most comfortable when we went which was important. They assured us they would try to help minimize side effects, treat them whenever possible and had services to help 'clean up the mess' so to speak. She's in speech and physical therapy right now and has a nutritionist working with us. None of the other hospitals offered any of that on site and said we could go off site for that. We are just frustrated with this new line of events.

    We will listen to the doctors but its just tough when dealing with something so huge in your life, not to be given all the facts to start with and instead toss things through it. Poor mom on top of worrying about lack of sleeping, lack of taste and having trouble passing her bowels, spent the weekend worried to death about this new treatment plan that she wasn't told and was worried what else they weren't telling us that they were going to spring on her. That's no way to deal with treatment. I felt so bad for her. 

  • littlemisskitty
    littlemisskitty Member Posts: 35
    #8
    Treatment

    I try to keep her spirits up and by reassuring her that others have been through it and that we can too, it helps. She likes to hear me count down the days and weeks reminding her that there is an end in sight. It also keeps everyone's mind set on the long run rather than the current side effects or pain she is going through. We were given choices when it came to her treatment. Everything so far has been a choice. She had some odds balances to weigh in and of course we picked the best place and the best treatment for her to give her the best outlook on life. She did weigh in her feelings on certain treatment options and the team tried to listen but also weighed in about their take on it. In the end, we were given a treatment plan which she signed and we started the count down. 

    I mostly was wondering if anyone else had experience with the whole extra few doses in one immediate area. I noticed even though mom doesn't come here, she always asks me what the group has to say because it makes her feel better knowing somewhere else has been down this road and has lived to talk about it. 

    After three surgeries, two of which resulted in facial deformities and disabilities, and with so many side effects to her last two surgeries making her go into this battle only part of a person already, she wanted to know the end date and when she can focus on recovering rather than ticking off more side effects. 

    While most people can go into a cancer battle and focus on them, we were not as able. We are caring for my elderly disabled grandma with dementia. She is unable to be left alone so I have spent many hours arranging care for her during certain hours of the day (since the state stepped in to assistant, I have to have approval on the hours I request) so knowing the end of treatment and the stages ahead of us, is huge. I have heard a few others on here caring for family members as well while dealing with cancer. It's a tough balancing act. I tried to make it so that her cancer treatment didn't base around grandma's care, but I'm sure mom took her into consideration when the doctors listed off various options for her. So right now we are balancing, mom's trips to yale for Radiation and chemo, her weekly trips to the dentist for flouride treatments, her twice a week Physical therapy and once a week speech therapy, her doctor's appointments, grandma's doctor's appointments and grandma's care but eventually it will settle down. 

    So far I have found the best statement for her (after trying many and having her snap back at me or give me glares :)) is reminding her that there is an end. We will someday all be up in Maine with her grandchildren enjoying their company. I will be able to eventually return to work as she will be once again healthy and won't need me to drive her as I have been for over a year. She worries about my future a lot since I had to give up my dream of running a daycare to take care of her and grandma. It's up in Maine waiting on me so it will happen someday just right now this is more important. I keep reminding her of this. She always smiles when I say this. I also remind her that someday this will be like a nightmare that passes when you open your eyes in the morning to sunshine. 

    Like i said earlier though, I was mostly wondering if this was normal or not. If people have had some changes in treatment plan and to hear that despite that, they are just fine and that there is an end to this eventually. That changes aren't a big deal even if they seem like it at the time and that 66 gray whatever that is exactly, isn't going to kill her. I was told by a doctor and I keep reminding her and me of it, that you don't die from treatment. You die from the disease and spreading not from radiation and chemo. 

  • corleone
    corleone Member Posts: 312 Member
    #9
    littlemisskitty said:

    Treatment

    I try to keep her spirits up and by reassuring her that others have been through it and that we can too, it helps. She likes to hear me count down the days and weeks reminding her that there is an end in sight. It also keeps everyone's mind set on the long run rather than the current side effects or pain she is going through. We were given choices when it came to her treatment. Everything so far has been a choice. She had some odds balances to weigh in and of course we picked the best place and the best treatment for her to give her the best outlook on life. She did weigh in her feelings on certain treatment options and the team tried to listen but also weighed in about their take on it. In the end, we were given a treatment plan which she signed and we started the count down. 

    I mostly was wondering if anyone else had experience with the whole extra few doses in one immediate area. I noticed even though mom doesn't come here, she always asks me what the group has to say because it makes her feel better knowing somewhere else has been down this road and has lived to talk about it. 

    After three surgeries, two of which resulted in facial deformities and disabilities, and with so many side effects to her last two surgeries making her go into this battle only part of a person already, she wanted to know the end date and when she can focus on recovering rather than ticking off more side effects. 

    While most people can go into a cancer battle and focus on them, we were not as able. We are caring for my elderly disabled grandma with dementia. She is unable to be left alone so I have spent many hours arranging care for her during certain hours of the day (since the state stepped in to assistant, I have to have approval on the hours I request) so knowing the end of treatment and the stages ahead of us, is huge. I have heard a few others on here caring for family members as well while dealing with cancer. It's a tough balancing act. I tried to make it so that her cancer treatment didn't base around grandma's care, but I'm sure mom took her into consideration when the doctors listed off various options for her. So right now we are balancing, mom's trips to yale for Radiation and chemo, her weekly trips to the dentist for flouride treatments, her twice a week Physical therapy and once a week speech therapy, her doctor's appointments, grandma's doctor's appointments and grandma's care but eventually it will settle down. 

    So far I have found the best statement for her (after trying many and having her snap back at me or give me glares :)) is reminding her that there is an end. We will someday all be up in Maine with her grandchildren enjoying their company. I will be able to eventually return to work as she will be once again healthy and won't need me to drive her as I have been for over a year. She worries about my future a lot since I had to give up my dream of running a daycare to take care of her and grandma. It's up in Maine waiting on me so it will happen someday just right now this is more important. I keep reminding her of this. She always smiles when I say this. I also remind her that someday this will be like a nightmare that passes when you open your eyes in the morning to sunshine. 

    Like i said earlier though, I was mostly wondering if this was normal or not. If people have had some changes in treatment plan and to hear that despite that, they are just fine and that there is an end to this eventually. That changes aren't a big deal even if they seem like it at the time and that 66 gray whatever that is exactly, isn't going to kill her. I was told by a doctor and I keep reminding her and me of it, that you don't die from treatment. You die from the disease and spreading not from radiation and chemo. 

    Now that they provided some

    Now that they provided some explanations as to how and why they are doing the radiation, seems more reassuring. Now just stay focused on the treatment, and ask questions (doctors, nurses and this forum) along the way. It looks you are on good hands. The treatment (radiation or chemo) can always be adjusted and modified, based on the side effects.

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #10
    littlemisskitty said:

    Change in treatment plan

    So we met with the radiation doctor's assistant today and will meet with the doctor himself tomorrow. The treatment was changed but she claims it was not really changed. I guess the way it works (if I'm understanding her correctly) is that she's getting 66 gray which means 6600 something or another. She gets 200 each hit. So she is getting normal radiation of her neck for 6 weeks with 200 a day. Then after the 30 treatments are up, she has to get another 3 treatments of 200 to just the tumor area. She said it's normal procedure to narrow down the radiation area for 3 days after radiation is 'done.' I'm not really comfortable with that but I guess it's normal? I just don't get why we weren't informed this. We were told to create something to count down. I took 30 pictures of her grand children and put them on index cards. Then I hole punched them and added them to a bulletin board I put by her bed. Everyday we turn over the index card to signal a day done and as reward she gets to see a picture of one of the two grand children. So anyway I had made this and now it's going to make me unturn over the few she has turned over already. She's really upset by that even though it's such a silly thing. Anyone ever hear of this? I guess in a way i can see it because to get to 66 gray on the tumor site you have to do that but we weren't even informed of the 66 grey part until friday a full week after treatment started. It's so frustarting. 

    And for those who ask, we went to 4 hospitals. In CT we were lucky enough to have 4 big hospitals in the area. We checked out St. Francis, Mom refused to do UConn for personal past surgery issues, Hartford, Boston and Yale. Yale was really the best. It had the best facilities, it had a team of people deciding treatment and it offered the best services. So we went with Yale because it seemed to be the best in that they had treated many. They actually had a head and neck section in their library with two specialists of the head and neck area. They did IMRTs and IGRTs and honestly they made us feel the most comfortable when we went which was important. They assured us they would try to help minimize side effects, treat them whenever possible and had services to help 'clean up the mess' so to speak. She's in speech and physical therapy right now and has a nutritionist working with us. None of the other hospitals offered any of that on site and said we could go off site for that. We are just frustrated with this new line of events.

    We will listen to the doctors but its just tough when dealing with something so huge in your life, not to be given all the facts to start with and instead toss things through it. Poor mom on top of worrying about lack of sleeping, lack of taste and having trouble passing her bowels, spent the weekend worried to death about this new treatment plan that she wasn't told and was worried what else they weren't telling us that they were going to spring on her. That's no way to deal with treatment. I felt so bad for her. 

     

     

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