afraid of radiation

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  • Ro10
    Ro10 Member Posts: 1,561
    bonniesue said:

    my mother
    Deanna, thanks for your thoughts. I am still finding my way around this site and sometimes cannot see the replies. May god bless you also. the NOPR study which is by the government and I believe the scans are paid for as you are in a study. The very helpful person was my mothers family doctor. He wrote a script for Endometrial cancer and put her stage on the prescription. He also wrote PET/CT fusion as you need the combined machine. They give you radioactive sugar through the IV prior and I guess low false positives and negatives. Sugar goes to where there is tumor and lights up if there is uptake. The place she had it done was a free standing center and they faxed the paperwork for her doc to fill out and fax back. The gyne onc was not really interested in the test so it was easier to go to the primary care doc that was open to it. I am thankful a radiologist mentioned it to me. Thanks for your kind words. Fran Dreschar's book Cancer Schmancer has helped my mother a lot. I have felt a lot of compassion from even strangers as I am a big crier and my mom is my right arm. I am thankful it was picked up or we would not have known. It is ashame there is not a marker like for prostate PSA but I hope to be a beacon of knowledge to help people know that a negative pap should not drop your guard. My mom had fatigue for a good year. Even if you go to a doctor for check-ups you must be vigil when your body talks quietly to you. If you know of any markers please let me know. the gyne onc said none. No one has mentioned chemo so the more I google and ask questions the more I think there is no consensus but I felt the rad onc probably knew more on the radiation topic however I am afraid of pelvic radiation and the possible complications and wonder who has the best machines and what not. And the long term bowel problems or damage or cancer caused by radiation. I am trying to be positive but my mom knows me so well it is hard to hide my emotions. Best, Bonniesue

    Welcome Bonniesue and Mother
    It does sound like your Mother has the less aggressive type of cancer. That is a blessing for both of you. Glad you found this site to get some of your questions answered and hopefully calm some of your fears. I would echo what Linda and Deanna have said. When I asked my ob/onocologist about the radiation therapy treatments, he said it was up to the radiation onocologist to decide what the best treatment plan would be. So as Deanna said the medical onocologist handles the chemo and the radiation onocologist handles the radiation therapy treatments. I started my radiation therapy treatments last week and have not had any problems with them yet. I had three chemo treatments before I started the radiation therapy. I have UPSC III-C so I too need the aggressive treatment plan.
    As Deannna said cancer is very scary, just to hear the words about someone you love. It is very hard for the person and their family, too. Finding out all you can about the cancer and asking questions is helpful to calm some of the fears. You said your Mother had no symptoms. Unfortunately many of us never had any symptoms either, and have this serious cancer. We were shocked when we got the stage of our cancer. We all hope and pray we have the right treatment plan that we can all show "no evidence of disease, NED. You and your Mother will be added to my prayer list. Take care.
  • deanna14
    deanna14 Member Posts: 732
    bonniesue said:

    my mother
    Deanna, thanks for your thoughts. I am still finding my way around this site and sometimes cannot see the replies. May god bless you also. the NOPR study which is by the government and I believe the scans are paid for as you are in a study. The very helpful person was my mothers family doctor. He wrote a script for Endometrial cancer and put her stage on the prescription. He also wrote PET/CT fusion as you need the combined machine. They give you radioactive sugar through the IV prior and I guess low false positives and negatives. Sugar goes to where there is tumor and lights up if there is uptake. The place she had it done was a free standing center and they faxed the paperwork for her doc to fill out and fax back. The gyne onc was not really interested in the test so it was easier to go to the primary care doc that was open to it. I am thankful a radiologist mentioned it to me. Thanks for your kind words. Fran Dreschar's book Cancer Schmancer has helped my mother a lot. I have felt a lot of compassion from even strangers as I am a big crier and my mom is my right arm. I am thankful it was picked up or we would not have known. It is ashame there is not a marker like for prostate PSA but I hope to be a beacon of knowledge to help people know that a negative pap should not drop your guard. My mom had fatigue for a good year. Even if you go to a doctor for check-ups you must be vigil when your body talks quietly to you. If you know of any markers please let me know. the gyne onc said none. No one has mentioned chemo so the more I google and ask questions the more I think there is no consensus but I felt the rad onc probably knew more on the radiation topic however I am afraid of pelvic radiation and the possible complications and wonder who has the best machines and what not. And the long term bowel problems or damage or cancer caused by radiation. I am trying to be positive but my mom knows me so well it is hard to hide my emotions. Best, Bonniesue

    Radiation.
    Bonniesue,
    I finished my radiation treatments in December and as far as I can tell, no lasting side effects from it. I was very tired in the afternoons with radiation and had a few loose stools if I didn't stick to the low fiber diet. I took Imodium for that and it helped. My bladder was a little bit fussy after radiation for several hours, but I am finding my bladder to be a little fussy at time now. So I don't know if is really from the radiation, surgery or just the whole process I have been through. I do have some leaking now and the doctor said it could be decreased bladder capacity due to the radiation. It is not really a huge issue as long as I don't let my bladder get too full. I don't have any lingering bowel issues. They were easily aggravated during txs and the recovery period for a couple weeks. Now they are back to normal.
    You ladies hang in there. I will pray for you as I do all of us that post here. Sounds like your mom is strong and will do well with the radiation treatments. God Bless, Deanna
  • daisy366
    daisy366 Member Posts: 1,458 Member
    kellyw314 said:

    I was diagnosed with stage
    I was diagnosed with stage 1-C endometrial cancer in May 2006 - complete hysterectomy with clean washing and lymph nodes - cancer had penetrated to 60% of uterine wall so gyn/onc referred me to radiation for 25 external beam treatments - met with radiologist and recommendation was for the 25 treatments and 3 internal treatments -- midway thru treatment radiologist changed the protocal based on her research - changed to 28 external with no internal due to my tumor located in the upper third of my uterus - most often a recurrence will occur in the vaginal cuff and within 2 years of surgery - ironically radiation machine was scheduled for maintenance on my 28th treatment which would have required my returning on a Monday - she adjusted the levels of radiation on Tuesday thru Thursday and my treatments ended with 27 sessions on that Thursday- have had minimum bowel issues resolved with immodium and never had bladder issues - fatigue was not an issue and the treatments lasted less than 10 minutes each session - more time spent adjusting me than the sweep of the machine kellyw

    welcome kelly
    Are you done with all treatment now? Sounds like you responded well to radiation with minimal side effects. Congrats.
    Mary Ann
  • daisy366
    daisy366 Member Posts: 1,458 Member
    bonniesue said:

    my mother
    Deanna, thanks for your thoughts. I am still finding my way around this site and sometimes cannot see the replies. May god bless you also. the NOPR study which is by the government and I believe the scans are paid for as you are in a study. The very helpful person was my mothers family doctor. He wrote a script for Endometrial cancer and put her stage on the prescription. He also wrote PET/CT fusion as you need the combined machine. They give you radioactive sugar through the IV prior and I guess low false positives and negatives. Sugar goes to where there is tumor and lights up if there is uptake. The place she had it done was a free standing center and they faxed the paperwork for her doc to fill out and fax back. The gyne onc was not really interested in the test so it was easier to go to the primary care doc that was open to it. I am thankful a radiologist mentioned it to me. Thanks for your kind words. Fran Dreschar's book Cancer Schmancer has helped my mother a lot. I have felt a lot of compassion from even strangers as I am a big crier and my mom is my right arm. I am thankful it was picked up or we would not have known. It is ashame there is not a marker like for prostate PSA but I hope to be a beacon of knowledge to help people know that a negative pap should not drop your guard. My mom had fatigue for a good year. Even if you go to a doctor for check-ups you must be vigil when your body talks quietly to you. If you know of any markers please let me know. the gyne onc said none. No one has mentioned chemo so the more I google and ask questions the more I think there is no consensus but I felt the rad onc probably knew more on the radiation topic however I am afraid of pelvic radiation and the possible complications and wonder who has the best machines and what not. And the long term bowel problems or damage or cancer caused by radiation. I am trying to be positive but my mom knows me so well it is hard to hide my emotions. Best, Bonniesue

    Welcome and NOPR study
    Welcome Bonniesue and mother. I'm also UPSC. I checked out the website you mentioned and it looks like the study is for medicare/medicaid eligible people. Is that correct? I'm not 65 yet so assume I would not qualify. But the PET scan issue is a big one for me. I have been fighting with my insurer (Aetna) for awhile about this issue. Still in the appeal process. I think we need all the tools available to us to help diagnose and treat our aggressive cancer and the PET seems to be the newer technology that can help. Unfortunately it also can give false positives - which I hope is the case for me since I had lots of lit up areas on my one and only PET last Oct. The uncertainty is anxiety provoking to say the least. I am choosing to believe and trust my new doctor on this issue. He is trying to get another one approved.

    Keep us posted on the PET scan issue.

    Mary Ann
  • bonniesue
    bonniesue Member Posts: 124
    daisy366 said:

    Welcome and NOPR study
    Welcome Bonniesue and mother. I'm also UPSC. I checked out the website you mentioned and it looks like the study is for medicare/medicaid eligible people. Is that correct? I'm not 65 yet so assume I would not qualify. But the PET scan issue is a big one for me. I have been fighting with my insurer (Aetna) for awhile about this issue. Still in the appeal process. I think we need all the tools available to us to help diagnose and treat our aggressive cancer and the PET seems to be the newer technology that can help. Unfortunately it also can give false positives - which I hope is the case for me since I had lots of lit up areas on my one and only PET last Oct. The uncertainty is anxiety provoking to say the least. I am choosing to believe and trust my new doctor on this issue. He is trying to get another one approved.

    Keep us posted on the PET scan issue.

    Mary Ann

    pet/ct overlay fusion-Mary ann
    My mom is 71 so it might be but-- the radiologist said you must have the machine that is a combo PET/CT fusion combination machine-- also they gave my mom a list of instructions as she could only have protein and no sugars or carbs the day before and of. She had to be well hydrated and was told to limit her activity prior to the test night before and day of. This cuts down on false positives from what I understand. I understood that the PET/CT fusion together is more accurate than either. I am happy your doctot is progressive. They thought my aunt had lung cancer and they ordered a PET/CT right away but for uterine cancer which is much rarer I think that insurance balks until more studies which they will get by these studies. Maybe contact the place where you will get the scan and have your primary doctor fill the paper work out to enter you in the study which I believe is gevernment funded. all the best and I wish you well. bonnie sue
  • bonniesue
    bonniesue Member Posts: 124
    daisy366 said:

    Welcome and NOPR study
    Welcome Bonniesue and mother. I'm also UPSC. I checked out the website you mentioned and it looks like the study is for medicare/medicaid eligible people. Is that correct? I'm not 65 yet so assume I would not qualify. But the PET scan issue is a big one for me. I have been fighting with my insurer (Aetna) for awhile about this issue. Still in the appeal process. I think we need all the tools available to us to help diagnose and treat our aggressive cancer and the PET seems to be the newer technology that can help. Unfortunately it also can give false positives - which I hope is the case for me since I had lots of lit up areas on my one and only PET last Oct. The uncertainty is anxiety provoking to say the least. I am choosing to believe and trust my new doctor on this issue. He is trying to get another one approved.

    Keep us posted on the PET scan issue.

    Mary Ann

    pet/ct overlay fusion-Mary ann
    My mom is 71 so it might be but-- the radiologist said you must have the machine that is a combo PET/CT fusion combination machine-- also they gave my mom a list of instructions as she could only have protein and no sugars or carbs the day before and of. She had to be well hydrated and was told to limit her activity prior to the test night before and day of. This cuts down on false positives from what I understand. I understood that the PET/CT fusion together is more accurate than either. I am happy your doctot is progressive. They thought my aunt had lung cancer and they ordered a PET/CT right away but for uterine cancer which is much rarer I think that insurance balks until more studies which they will get by these studies. Maybe contact the place where you will get the scan and have your primary doctor fill the paper work out to enter you in the study which I believe is gevernment funded. all the best and I wish you well. bonnie sue
  • bonniesue
    bonniesue Member Posts: 124
    daisy366 said:

    Welcome and NOPR study
    Welcome Bonniesue and mother. I'm also UPSC. I checked out the website you mentioned and it looks like the study is for medicare/medicaid eligible people. Is that correct? I'm not 65 yet so assume I would not qualify. But the PET scan issue is a big one for me. I have been fighting with my insurer (Aetna) for awhile about this issue. Still in the appeal process. I think we need all the tools available to us to help diagnose and treat our aggressive cancer and the PET seems to be the newer technology that can help. Unfortunately it also can give false positives - which I hope is the case for me since I had lots of lit up areas on my one and only PET last Oct. The uncertainty is anxiety provoking to say the least. I am choosing to believe and trust my new doctor on this issue. He is trying to get another one approved.

    Keep us posted on the PET scan issue.

    Mary Ann

    pet/ct overlay fusion-Mary ann
    My mom is 71 so it might be but-- the radiologist said you must have the machine that is a combo PET/CT fusion combination machine-- also they gave my mom a list of instructions as she could only have protein and no sugars or carbs the day before and of. She had to be well hydrated and was told to limit her activity prior to the test night before and day of. This cuts down on false positives from what I understand. I understood that the PET/CT fusion together is more accurate than either. I am happy your doctot is progressive. They thought my aunt had lung cancer and they ordered a PET/CT right away but for uterine cancer which is much rarer I think that insurance balks until more studies which they will get by these studies. Maybe contact the place where you will get the scan and have your primary doctor fill the paper work out to enter you in the study which I believe is gevernment funded. all the best and I wish you well. bonnie sue
  • bonniesue
    bonniesue Member Posts: 124
    daisy366 said:

    Welcome and NOPR study
    Welcome Bonniesue and mother. I'm also UPSC. I checked out the website you mentioned and it looks like the study is for medicare/medicaid eligible people. Is that correct? I'm not 65 yet so assume I would not qualify. But the PET scan issue is a big one for me. I have been fighting with my insurer (Aetna) for awhile about this issue. Still in the appeal process. I think we need all the tools available to us to help diagnose and treat our aggressive cancer and the PET seems to be the newer technology that can help. Unfortunately it also can give false positives - which I hope is the case for me since I had lots of lit up areas on my one and only PET last Oct. The uncertainty is anxiety provoking to say the least. I am choosing to believe and trust my new doctor on this issue. He is trying to get another one approved.

    Keep us posted on the PET scan issue.

    Mary Ann

    sorry my response came three times
    Mary Ann-my reply came three times. It looked like my computer froze and I am not the best with computers. bonnie
  • daisy366
    daisy366 Member Posts: 1,458 Member
    bonniesue said:

    pet/ct overlay fusion-Mary ann
    My mom is 71 so it might be but-- the radiologist said you must have the machine that is a combo PET/CT fusion combination machine-- also they gave my mom a list of instructions as she could only have protein and no sugars or carbs the day before and of. She had to be well hydrated and was told to limit her activity prior to the test night before and day of. This cuts down on false positives from what I understand. I understood that the PET/CT fusion together is more accurate than either. I am happy your doctot is progressive. They thought my aunt had lung cancer and they ordered a PET/CT right away but for uterine cancer which is much rarer I think that insurance balks until more studies which they will get by these studies. Maybe contact the place where you will get the scan and have your primary doctor fill the paper work out to enter you in the study which I believe is gevernment funded. all the best and I wish you well. bonnie sue

    Bonnie
    I did have the PET/CT fusion. I will inquire with my doctor about the study or call them myself to see if age is a factor. I should know this week about my appeal status. It really is ridiculous that we have to fight to have diagnostic tests. My insurance would pay if it was ovarian ca. Go figure!

    Take care and thanks again for the info. Mary Ann
  • kellyw314
    kellyw314 Member Posts: 51
    Yes my treatments were
    Yes my treatments were completed in Sept 2006 = visit with gyn/onc this June for 3 year check and hope all continues to be fine kellly
  • bonniesue
    bonniesue Member Posts: 124
    Ro10 said:

    Welcome Bonniesue and Mother
    It does sound like your Mother has the less aggressive type of cancer. That is a blessing for both of you. Glad you found this site to get some of your questions answered and hopefully calm some of your fears. I would echo what Linda and Deanna have said. When I asked my ob/onocologist about the radiation therapy treatments, he said it was up to the radiation onocologist to decide what the best treatment plan would be. So as Deanna said the medical onocologist handles the chemo and the radiation onocologist handles the radiation therapy treatments. I started my radiation therapy treatments last week and have not had any problems with them yet. I had three chemo treatments before I started the radiation therapy. I have UPSC III-C so I too need the aggressive treatment plan.
    As Deannna said cancer is very scary, just to hear the words about someone you love. It is very hard for the person and their family, too. Finding out all you can about the cancer and asking questions is helpful to calm some of the fears. You said your Mother had no symptoms. Unfortunately many of us never had any symptoms either, and have this serious cancer. We were shocked when we got the stage of our cancer. We all hope and pray we have the right treatment plan that we can all show "no evidence of disease, NED. You and your Mother will be added to my prayer list. Take care.

    Ro10
    Ro10, thanks for your reply. I am just getting used to this site and I wish you well and my thoughts and prayers are with you. I am glad you are tolerating all well.bonniesue
  • jankenb
    jankenb Member Posts: 28

    BonnieSue: Forgive me if you posted this before...
    Hi, BonnieSue! What type of cancer does your mother have? A lot of the decisions on radiation and chemo have to do with the TYPE of cancer cell. Aggressive cell types like papillary serous and clear cell usually call for some type of additional treatment beyond surgery regardless of the stage, since they are sneaky cancer cells that exfoliate and travel in microscopic form and then begin to grow later and cause you added heartache. So if you have an aggressive fast-growing cancer type, they like to do precautionary treatments after the surgery to make sure no calls are hiding anywhere else.

    I have UPSC Stage III-c, and this papillary serous type of uterine cancer is one of those dangerous aggressive types that requires a LOT of additional treatment after surgery, even if all indications are that they 'got it all'. Actually your mother had a very small number of lymph nodes removed. I had 25 lymph nodes removed and the cancer was only found in 1 of the 25, in microscopic form. Your radiation oncologist may be concerned with the small number of lymph nodes for diagnosis and therefore want to be more aggressive, while your surgeon may be defensive about the small number of lymph nodes he/she removed. (Had my surgeon only removed 10 or so lymph nodes, he could easily have left in the one node that had the cancer in it, and I would have been incporrectly staged.)

    Please see if you can find out what TYPE of cancer cells your mother is dealing with. If she has the more common type of uterine cancer, then I wouldn't want you to be frightened by our posts and the aggressiveness of our treatments, as MOST uterine cancers are not nearly as aggressive as UPSC. But if she has a more aggressive type of cancer, I would err on the side of 'too agressive' treatment with that small number of lymph nodes determining your mother's staging. ((((BonnieSue)))).

    one note on lymph nodes
    With my surgery she did a complete pelvic lymphadenectomy even though they all looked normal (because my myometrial invastion was greater than 50%)
    However 2 came back positive.
    WHen I saw the complete path report I was surprized by how few lymph nodes there were in total given the TOTAL lymphadenectomy.
    THe surgeon told me that the number of lymph nodes a person has is totally dependant on their weight and heavier people have more lymph nodes
    I think that the better question to ask is whether they took them ALL, or whether they just sampled them.
    I think my total lymph count was only about 12, yet the gyn/oncologist said it was a VERY clean resection and she felt certain there were none left.
    janet
  • jankenb
    jankenb Member Posts: 28
    bonniesue said:

    pet/ct overlay fusion-Mary ann
    My mom is 71 so it might be but-- the radiologist said you must have the machine that is a combo PET/CT fusion combination machine-- also they gave my mom a list of instructions as she could only have protein and no sugars or carbs the day before and of. She had to be well hydrated and was told to limit her activity prior to the test night before and day of. This cuts down on false positives from what I understand. I understood that the PET/CT fusion together is more accurate than either. I am happy your doctot is progressive. They thought my aunt had lung cancer and they ordered a PET/CT right away but for uterine cancer which is much rarer I think that insurance balks until more studies which they will get by these studies. Maybe contact the place where you will get the scan and have your primary doctor fill the paper work out to enter you in the study which I believe is gevernment funded. all the best and I wish you well. bonnie sue

    PET/CT
    Hi I am 52 so not medicare , I had a PET/ CT, had to sign a waver in case the insurance did not cover. From what I have found in researching it, the PET at this stage is being studied in Uterine cancers looking for recurances.
    The reason mine was ordered was because the surgeon did the frozen section in the OR and because myometrium invaded> 50%, did pelvic lymphadenctomy, HOWEVER since the grade was only grade 1 she felt that the risk of mets was very low, (and at that time she did not know that the pelvic lymph nodes were positive because it was microscopic) she opted not to do paraoaortic lymphadenectomy.

    She subsequently felt that this "grade 1" was not behaving like a grade 1 and so opted to look closer at the paraortic nodes. with the PET.

    It was negative, not sure how this holds up against tissue microscopy.

    My insurance covered 3000 of the test and I will have to pay the other 900

    I have also recently read where they are advocating the use of PET/CTs in follow up after therapy.....say ....when the ca 125 goes up.

    Apparently PET is better and more approved at picking up recurrances vs primarys.....not a lot of data though
    janet
  • bonniesue
    bonniesue Member Posts: 124
    jankenb said:

    one note on lymph nodes
    With my surgery she did a complete pelvic lymphadenectomy even though they all looked normal (because my myometrial invastion was greater than 50%)
    However 2 came back positive.
    WHen I saw the complete path report I was surprized by how few lymph nodes there were in total given the TOTAL lymphadenectomy.
    THe surgeon told me that the number of lymph nodes a person has is totally dependant on their weight and heavier people have more lymph nodes
    I think that the better question to ask is whether they took them ALL, or whether they just sampled them.
    I think my total lymph count was only about 12, yet the gyn/oncologist said it was a VERY clean resection and she felt certain there were none left.
    janet

    nodes
    jankenb, Hi, I have been worried since only six pelvic lymph nodes were taken and were neg. and no pariaortics. He told me that she(my mom age 71) did not have many and he stripped them. He did not do a fresh frozen from what I could see. It is worrisome to me and I have asked should they go in and resample and it seems the answer is no. her pelvic washings were neg. My mom is thin and he said very few nodes. Her myometrium was 1.0-1.2/1.4 invaded. Did you need pelvic rad and what grade and stage were you? The surgeon says that 2 years ago he would have just watched her with no brachytherapy yet now she is supposed to get pelvic 5 wks and internal radx. Did you vave robotics? Thanks bonnie
  • pacarini
    pacarini Member Posts: 6
    kellyw314 said:

    I was diagnosed with stage
    I was diagnosed with stage 1-C endometrial cancer in May 2006 - complete hysterectomy with clean washing and lymph nodes - cancer had penetrated to 60% of uterine wall so gyn/onc referred me to radiation for 25 external beam treatments - met with radiologist and recommendation was for the 25 treatments and 3 internal treatments -- midway thru treatment radiologist changed the protocal based on her research - changed to 28 external with no internal due to my tumor located in the upper third of my uterus - most often a recurrence will occur in the vaginal cuff and within 2 years of surgery - ironically radiation machine was scheduled for maintenance on my 28th treatment which would have required my returning on a Monday - she adjusted the levels of radiation on Tuesday thru Thursday and my treatments ended with 27 sessions on that Thursday- have had minimum bowel issues resolved with immodium and never had bladder issues - fatigue was not an issue and the treatments lasted less than 10 minutes each session - more time spent adjusting me than the sweep of the machine kellyw

    Have you had a recurrence since your treatment? I have same diagnosis but doctor only recommended three brachytherapy.