Frustrated with Doctor and nurses
Jennifer
Comments
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I can only say that I was
I can only say that I was asked every day a list of questions by the Rad techs and one of them was "Have you been coughing?". I never had any coughs so don't know what the Dr. would have had to say.
I was badly burned (6 weeks for the last scabs to come off) and was totlly frustrated that there was nothing that could be done. The entire rad area was open and weeping/oozing for about 4 weeks of the time with some areas much deeper than the others. Could not keep bandages on because of the amount of discharge - had to wear white t-shirts and change them every hour - 2 hours. All I could do was keep it slathered with Aquaphor (Silvadine/Sulfadine was not possible as I'm allergic to Sulfa), twice a day Domeboro soaks and oral antibiotics. Luckily never got any infections in it but do have some 'real nice' scars over about 1/2 the rad area from it.
You might ask about taking a 'vacation' before you start the last week of rads for skin to heal some.
Good Luck!
Susan0 -
Hi
I too was dx with HD aged
Hi
I too was dx with HD aged 17. I am now 36 and had a bilateral mastectomy on Feb 16th foe prevention as us ladies who had mantle radiation are high risk.
My frustration was BEFORE i was dx as i found the lump aged 16 and my Dr wouldn't take me seriously.It was 6 months before i was finally reffered to see a surgeon.0 -
Hi
I too was dx with HD aged
Hi
I too was dx with HD aged 17. I am now 36 and had a bilateral mastectomy on Feb 16th foe prevention as us ladies who had mantle radiation are high risk.
My frustration was BEFORE i was dx as i found the lump aged 16 and my Dr wouldn't take me seriously.It was 6 months before i was finally reffered to see a surgeon.0 -
Hi
I too was dx with HD aged
Hi
I too was dx with HD aged 17. I am now 36 and had a bilateral mastectomy on Feb 16th foe prevention as us ladies who had mantle radiation are high risk.
My frustration was BEFORE i was dx as i found the lump aged 16 and my Dr wouldn't take me seriously.It was 6 months before i was finally reffered to see a surgeon.0 -
Hi
I too was dx with HD aged
Hi
I too was dx with HD aged 17. I am now 36 and had a bilateral mastectomy on Feb 16th foe prevention as us ladies who had mantle radiation are high risk.
My frustration was BEFORE i was dx as i found the lump aged 16 and my Dr wouldn't take me seriously.It was 6 months before i was finally reffered to see a surgeon.0 -
Hi
I too was dx with HD aged
Hi
I too was dx with HD aged 17. I am now 36 and had a bilateral mastectomy on Feb 16th foe prevention as us ladies who had mantle radiation are high risk.
My frustration was BEFORE i was dx as i found the lump aged 16 and my Dr wouldn't take me seriously.It was 6 months before i was finally reffered to see a surgeon.0 -
Hi
I too was dx with HD aged
Hi
I too was dx with HD aged 17. I am now 36 and had a bilateral mastectomy on Feb 16th foe prevention as us ladies who had mantle radiation are high risk.
My frustration was BEFORE i was dx as i found the lump aged 16 and my Dr wouldn't take me seriously.It was 6 months before i was finally reffered to see a surgeon.
During my treatments and the 10 yrs that followed i was extremely happy with my care.I had an amazing onc but then he retired.I saw about 3 different onc's after that then one finally stayed.
I was fairly happy with my follow ups but as the years have progressed,i feel she is trying to get rid of me.
A few times now she has said i can stop my follow ups now as i've been clear nearly 19 yrs,but i dont want to.You see,im a worrier and i know if i stopped going,i would convince myself i had cancer again! Especially as the treatments left me at high risk of other cancers.
I would most definatly seek a 2nd opinion about your cough.Dont worry about offending anyone. Your health comes before the onc's feelings.
I hope all is well.
Kay0 -
Kay, go with your gut feelingsm-star said:Hi
I too was dx with HD aged
Hi
I too was dx with HD aged 17. I am now 36 and had a bilateral mastectomy on Feb 16th foe prevention as us ladies who had mantle radiation are high risk.
My frustration was BEFORE i was dx as i found the lump aged 16 and my Dr wouldn't take me seriously.It was 6 months before i was finally reffered to see a surgeon.
During my treatments and the 10 yrs that followed i was extremely happy with my care.I had an amazing onc but then he retired.I saw about 3 different onc's after that then one finally stayed.
I was fairly happy with my follow ups but as the years have progressed,i feel she is trying to get rid of me.
A few times now she has said i can stop my follow ups now as i've been clear nearly 19 yrs,but i dont want to.You see,im a worrier and i know if i stopped going,i would convince myself i had cancer again! Especially as the treatments left me at high risk of other cancers.
I would most definatly seek a 2nd opinion about your cough.Dont worry about offending anyone. Your health comes before the onc's feelings.
I hope all is well.
Kay
Kay,
If you feel that you need to have a once a year follow up, do it. Don't let any doctor tell you otherwise. How difficult is it to switch to a new doctor? Or...can you talk to this one on a one-to-one basis?
A woman in my support group at Evanston Hospital had lymphoma in her early 20's. 20-22 years later she ends up with breast cancer. (I'm not exactly sure on the length of time, but I know I am in the ballpark figure.)
Lots of Hugs,
Janelle0 -
Kaym-star said:Hi
I too was dx with HD aged
Hi
I too was dx with HD aged 17. I am now 36 and had a bilateral mastectomy on Feb 16th foe prevention as us ladies who had mantle radiation are high risk.
My frustration was BEFORE i was dx as i found the lump aged 16 and my Dr wouldn't take me seriously.It was 6 months before i was finally reffered to see a surgeon.
During my treatments and the 10 yrs that followed i was extremely happy with my care.I had an amazing onc but then he retired.I saw about 3 different onc's after that then one finally stayed.
I was fairly happy with my follow ups but as the years have progressed,i feel she is trying to get rid of me.
A few times now she has said i can stop my follow ups now as i've been clear nearly 19 yrs,but i dont want to.You see,im a worrier and i know if i stopped going,i would convince myself i had cancer again! Especially as the treatments left me at high risk of other cancers.
I would most definatly seek a 2nd opinion about your cough.Dont worry about offending anyone. Your health comes before the onc's feelings.
I hope all is well.
Kay
I hear ya about being young and no one wanting to listen. I was 15 and started feeling tired. Typical teen they told my mom. They put me on a iron supplement and that didn't change my blook counts. FINALLY after I slept for literally 48 hours I went to the emerg room and they did a biopsy of my lung and found the Hodgk. It took all that for a teenager to be "heard". Sad fact of life and I hope that some Dr learned a lesson from me - but I doubt it. You keep going to your Dr if you want to. Hodgkins is never cured it is always in remission. Find another Dr if you want to, or just keep going and ignore the comments. I know easier said than done, but it is your life and it isn't like it CAN'T come back, because it can. I just hope it doesn't for either one of us.
J0 -
I'm not thrilled with your doctor and nurse either!!!
Your treatments can't end quick enough with these 2. I have my papers from my radiation department at home (I'm at work), but in searchng my memory, I do believe that those papers contain information with respect that a cough is not to be ignore.
Radiation can sometimes spill into another area - known as an overflow. You want to be sure that your lungs are OK.
Go to your medical oncology on your cough since your rad doctor is ignoring it.
Lots of Hugs,
Janelle0 -
Drs. ObjectiveDifferent Ballgame said:I'm not thrilled with your doctor and nurse either!!!
Your treatments can't end quick enough with these 2. I have my papers from my radiation department at home (I'm at work), but in searchng my memory, I do believe that those papers contain information with respect that a cough is not to be ignore.
Radiation can sometimes spill into another area - known as an overflow. You want to be sure that your lungs are OK.
Go to your medical oncology on your cough since your rad doctor is ignoring it.
Lots of Hugs,
Janelle
Since being one of the patients that ended up with all sorts of problems I know one thing and that is they are more concerned about the treatments and keeping them on track than they are about your health. They know your health will deteriorate during this time and that is truly how they look at it.
When I had a raging blood infection I couldn't do chemo as schedualed and it threw them for aloop though my health was telling them they were doing too much. My immune system was trashed and probably will never come back totally one reason I stay away from big crowds. I stay home more anything because I have become a germ afobe. After infection took over I will never think the same way about germs and infection out of surgery that lays dorment until your immune system takes the big dive.
I just think doctors would like to believe we are stupid one reason I read the fine print to everything and ended up enlightening them most of the time.
Don't let them get away with minimizing your pain or feelings.
WE can only be our own best advocates.
Tara0 -
Not All Doctors Are Created Equal
Hi Jennifer,
I think you are certainly justified in your reasons to look for another Dr. It is just too bad that you have to. It would have been much better to have had a good on on the git-go. My radiation oncologist listens to my lungs each week, and is always reminding me that if there is anything I am concerned about I only have to say so. The tech, who I see daily, will mention things to the nurse. I am truly blessed with a wonderful medical team here. There was a time when I didn't think my medical oncologist was paying attention, so I took my issues to my family practitioner. I just figured if he weren't concerned about it, it was something that wasn't a concern in his practice. (issues were chemo brain, depression. Couldn't go on the way I was.) Well, there has been a turn around in the attitude of my medical oncologist since then. (They are both in the same clinic, so I'm pretty sure there some words said. Don't know what the words were, but do know it worked.) Now my medical onc takes extreme care to explain the things I ask about. Funny thing is, I think he is a happier person for it. He used to be in such a rush all the time. Never taking an extra minute for a laugh or to look at the expression on your face to see if you were comprehending what he was saying. Sometimes people need to know when they are not doing the things they should. I hope you can find it in yourself to say to your current doctor exactly what it is that is chasing you away. You may save some other poor soul your agony. And the meantime, get your cough checked out. Don't wait.
You will be in my prayers. Stay strong!
Sharon0 -
UpdateFlakey_Flake said:Not All Doctors Are Created Equal
Hi Jennifer,
I think you are certainly justified in your reasons to look for another Dr. It is just too bad that you have to. It would have been much better to have had a good on on the git-go. My radiation oncologist listens to my lungs each week, and is always reminding me that if there is anything I am concerned about I only have to say so. The tech, who I see daily, will mention things to the nurse. I am truly blessed with a wonderful medical team here. There was a time when I didn't think my medical oncologist was paying attention, so I took my issues to my family practitioner. I just figured if he weren't concerned about it, it was something that wasn't a concern in his practice. (issues were chemo brain, depression. Couldn't go on the way I was.) Well, there has been a turn around in the attitude of my medical oncologist since then. (They are both in the same clinic, so I'm pretty sure there some words said. Don't know what the words were, but do know it worked.) Now my medical onc takes extreme care to explain the things I ask about. Funny thing is, I think he is a happier person for it. He used to be in such a rush all the time. Never taking an extra minute for a laugh or to look at the expression on your face to see if you were comprehending what he was saying. Sometimes people need to know when they are not doing the things they should. I hope you can find it in yourself to say to your current doctor exactly what it is that is chasing you away. You may save some other poor soul your agony. And the meantime, get your cough checked out. Don't wait.
You will be in my prayers. Stay strong!
Sharon
Yesterday I HAD to see the Dr for the weekly follow up and the fact that I am so severely burned that it has opened and weeping. I was told that I had to see the particular nurse that I don't like. I told the radiation nurses I DID NOT want to see her and I told them why. They were stunned that I was treated so poorly. They told me that my Dr said I had to see her b/c she was the only one capable of telling me how to use the Mediflex... very doubtful and I hate to be lied to. Anyway the nurse was wayyy too nice and I am guessing she was told that she ticked me off. I am still gonna change b/c I don't like the way they treat other patients either.. the roll of the eyes etc. I am a people watcher.. lol 3 more treatments and then I can go on my merry way.
Thank you all for your support it is SOOO appreciated!! Jennifer0 -
A positive!ReturntoCamelot said:Update
Yesterday I HAD to see the Dr for the weekly follow up and the fact that I am so severely burned that it has opened and weeping. I was told that I had to see the particular nurse that I don't like. I told the radiation nurses I DID NOT want to see her and I told them why. They were stunned that I was treated so poorly. They told me that my Dr said I had to see her b/c she was the only one capable of telling me how to use the Mediflex... very doubtful and I hate to be lied to. Anyway the nurse was wayyy too nice and I am guessing she was told that she ticked me off. I am still gonna change b/c I don't like the way they treat other patients either.. the roll of the eyes etc. I am a people watcher.. lol 3 more treatments and then I can go on my merry way.
Thank you all for your support it is SOOO appreciated!! Jennifer
Being able to get the mepilex on and for it to stay for any period of time is definately a positive. Every one of the rad nurses tried to get it to stay on me but the burn was just putting out too much fluid for it to stay. Being able to use it should speed healing.
Did you get any pain meds for it? I had oxycodon, then vicodan when it was about 1/2 healed until only the deepest was still open amd I stopped taking anything then as the area of the worst burned was in an area that never got feeling back after surgery so I didn't feel it all0 -
You always have the right toFlakey_Flake said:Not All Doctors Are Created Equal
Hi Jennifer,
I think you are certainly justified in your reasons to look for another Dr. It is just too bad that you have to. It would have been much better to have had a good on on the git-go. My radiation oncologist listens to my lungs each week, and is always reminding me that if there is anything I am concerned about I only have to say so. The tech, who I see daily, will mention things to the nurse. I am truly blessed with a wonderful medical team here. There was a time when I didn't think my medical oncologist was paying attention, so I took my issues to my family practitioner. I just figured if he weren't concerned about it, it was something that wasn't a concern in his practice. (issues were chemo brain, depression. Couldn't go on the way I was.) Well, there has been a turn around in the attitude of my medical oncologist since then. (They are both in the same clinic, so I'm pretty sure there some words said. Don't know what the words were, but do know it worked.) Now my medical onc takes extreme care to explain the things I ask about. Funny thing is, I think he is a happier person for it. He used to be in such a rush all the time. Never taking an extra minute for a laugh or to look at the expression on your face to see if you were comprehending what he was saying. Sometimes people need to know when they are not doing the things they should. I hope you can find it in yourself to say to your current doctor exactly what it is that is chasing you away. You may save some other poor soul your agony. And the meantime, get your cough checked out. Don't wait.
You will be in my prayers. Stay strong!
Sharon
You always have the right to change doctors if you want. You could even just interview them. You deserve to be treated right and with respect. Trust in your doctors is very important. Good luck!0
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