Radiotherapy or not?

lulubuddy
lulubuddy Member Posts: 7
in Uterine/Endometrial Cancer #1
Hi I was diagnosed with USPC 1a in January this year and had a hysterectomy in March, following a PET scan they also discovered I had lung cancer, the tumour was very small so that was removed by surgery in May this year. Thankfully no further treatment is needed.
I am having chemo carboplatin & paclitaxel at the moment, the last one next week, making a total of 4. I to have lost my hair and suffered quite badly with muscle pain, but am coping quite well otherwise. I just want to ask someone as when I have finished my chemo they would like to do radiotherapy (vault brachytherapy in 3 fractions (internally) Am not sure that it is necessary! it seems very intrusive, and have read that others with 1a contained in the endometrium had no further treatment. It frightens me when I read how aggressive USPC is!! any advise for me I would be very grateful. I'm seeing my Oncologist on Wed to discuss this treatment would like to be well informed before this meeting.
thanks.

Comments

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #2
    Different type of Uterine
    Different type of Uterine Cancer stage 3C grade 3 carsonma sarcoma in April 2011, surgery, 6 rounds of carbo/taxol and no radiation. The standard per National Cancer Institute and it seems that most of the women on here had radiation but I did not have it because my gyn onc dr said that there was not a need at this time. I sometime feel that I did not get the best protocal because of the lack of radiation but then I am glad that I did not have it. If the cancer returns then I will get it. If I had been dx with USPC I would have wanted to fight it as hard as I could based on what some of the women have gone through on this site with that type of cancer. It is a judgement call along with all the information that you can get from your gyn onc drs and from the women on this site that have that form of cancer. They have been there and done that. Praying for you. trish
  • beila
    beila Member Posts: 97 Member
    #3
    brachytherapy
    lulubuddy

    YES YES YES definitely have the brachytherapy!

    What few studies there are in USPC show reduction in recurrence (vaginal) with brachytherapy radiation,including in those with early stages.
    You could google and read the studies out of Boston, New York, Texas
    Furthermore it does not sound that bad in terms of tolerance...not that intrusive...just little tubes in the vagina...sounds less uncomfortable than a speculum exam

    Thank you to the ladies who have reassured me that even though I flunked Taxol/carboplatin there are other chemo drugs out there for me. Today my Gyn Oncologist is making the referral to Medical Oncology, who apparently are more versed in a wider range of chemo than the gyn/oncology team
    Your words have improved my hope, which definitely needs bolstering, after the shock on Thursday that the 1st line chemo did not work for me

    Beila
  • beila
    beila Member Posts: 97 Member
    #4
    beila said:

    brachytherapy
    lulubuddy

    YES YES YES definitely have the brachytherapy!

    What few studies there are in USPC show reduction in recurrence (vaginal) with brachytherapy radiation,including in those with early stages.
    You could google and read the studies out of Boston, New York, Texas
    Furthermore it does not sound that bad in terms of tolerance...not that intrusive...just little tubes in the vagina...sounds less uncomfortable than a speculum exam

    Thank you to the ladies who have reassured me that even though I flunked Taxol/carboplatin there are other chemo drugs out there for me. Today my Gyn Oncologist is making the referral to Medical Oncology, who apparently are more versed in a wider range of chemo than the gyn/oncology team
    Your words have improved my hope, which definitely needs bolstering, after the shock on Thursday that the 1st line chemo did not work for me

    Beila

    brachytherapy
    PS I am also a doctor
  • lulubuddy
    lulubuddy Member Posts: 7
    #5
    txtrisha55 said:

    Different type of Uterine
    Different type of Uterine Cancer stage 3C grade 3 carsonma sarcoma in April 2011, surgery, 6 rounds of carbo/taxol and no radiation. The standard per National Cancer Institute and it seems that most of the women on here had radiation but I did not have it because my gyn onc dr said that there was not a need at this time. I sometime feel that I did not get the best protocal because of the lack of radiation but then I am glad that I did not have it. If the cancer returns then I will get it. If I had been dx with USPC I would have wanted to fight it as hard as I could based on what some of the women have gone through on this site with that type of cancer. It is a judgement call along with all the information that you can get from your gyn onc drs and from the women on this site that have that form of cancer. They have been there and done that. Praying for you. trish

    thank you appreciate your
    thank you appreciate your comments
  • lulubuddy
    lulubuddy Member Posts: 7
    #6
    beila said:

    brachytherapy
    lulubuddy

    YES YES YES definitely have the brachytherapy!

    What few studies there are in USPC show reduction in recurrence (vaginal) with brachytherapy radiation,including in those with early stages.
    You could google and read the studies out of Boston, New York, Texas
    Furthermore it does not sound that bad in terms of tolerance...not that intrusive...just little tubes in the vagina...sounds less uncomfortable than a speculum exam

    Thank you to the ladies who have reassured me that even though I flunked Taxol/carboplatin there are other chemo drugs out there for me. Today my Gyn Oncologist is making the referral to Medical Oncology, who apparently are more versed in a wider range of chemo than the gyn/oncology team
    Your words have improved my hope, which definitely needs bolstering, after the shock on Thursday that the 1st line chemo did not work for me

    Beila

    thank you so much for your
    thank you so much for your reply, really appreciate your comments
    Lulubuddy
  • debrajo
    debrajo Member Posts: 1,095 Member
    #7
    Hi, I have UPSC 1a,grade c.
    Hi, I have UPSC 1a,grade c. Md Anderson is adament that this type get the internal radiation. I had six rounds of Taxol/carboplatin AND five rounds brachytherapy. Did you have two primary cancers? I was 1a with no spread except 05.cm into 5.0 myodemun. Curious. By the way, I am 28 months clear of chemo. Best, debrajo
  • kansasgal
    kansasgal Member Posts: 122 Member
    #8
    UPSC - chemo plus brachytherapy
    Following a hysterectomy in April 2009, I was diagnosed with Grade 2 Stage 1b endometrioid carcinoma AND with Grade 3 Stage 1a UPSC found both in a polyp and in several small spots in the lower uterine segment. My local gyn-oncologist recommended 6 rounds of carbo/taxol. I traveled to another state for a second opinion with a gyn-oncologist specializing in research and treatment of UPSC. His recommendation was adding 3 rounds of upper vaginal vault brachytherapy to the Carboplatinum/Taxol. A gyn-oncologist at Mayo Clinic who reviewed my records (but did not see me) also recommended adding the brachytherapy. That is what I decided to do. I have had no evidence of disease since my active treatment ended in late 2009. I still see a gyn-oncologist every 6 months for a PAP and for just general follow-up.

    I am sending you a big hug as you make big treatment decisions.

    Sally
  • lulubuddy
    lulubuddy Member Posts: 7
    #9
    kansasgal said:

    UPSC - chemo plus brachytherapy
    Following a hysterectomy in April 2009, I was diagnosed with Grade 2 Stage 1b endometrioid carcinoma AND with Grade 3 Stage 1a UPSC found both in a polyp and in several small spots in the lower uterine segment. My local gyn-oncologist recommended 6 rounds of carbo/taxol. I traveled to another state for a second opinion with a gyn-oncologist specializing in research and treatment of UPSC. His recommendation was adding 3 rounds of upper vaginal vault brachytherapy to the Carboplatinum/Taxol. A gyn-oncologist at Mayo Clinic who reviewed my records (but did not see me) also recommended adding the brachytherapy. That is what I decided to do. I have had no evidence of disease since my active treatment ended in late 2009. I still see a gyn-oncologist every 6 months for a PAP and for just general follow-up.

    I am sending you a big hug as you make big treatment decisions.

    Sally

    brachytherapy
    Hi Sally,

    Am so glad I found you all, I've terrified myself looking on the internet at UPSC had convinced myself the cancer would beat me in the end! feeling much more in control now and not alone. have decided to have the 3 vault bachytherapy treatments offered and will tell my oncologist when I see him tomorrow. One more treatment of carboplatinum/taxol next week. then the bachytherapy.

    thank you so much there is no web sight that I could find in England to help me, so great, thanks lulub
  • lulubuddy
    lulubuddy Member Posts: 7
    #10
    debrajo said:

    Hi, I have UPSC 1a,grade c.
    Hi, I have UPSC 1a,grade c. Md Anderson is adament that this type get the internal radiation. I had six rounds of Taxol/carboplatin AND five rounds brachytherapy. Did you have two primary cancers? I was 1a with no spread except 05.cm into 5.0 myodemun. Curious. By the way, I am 28 months clear of chemo. Best, debrajo

    2 primary cancers
    Hi Debrajo, Yes following my hysterectomy I had a pet scan. After surgery to remove tumour from my lung it was confirmed that it was lung cancer, the tumour was very small and am hopeful will not return. Having UPSC did in fact help me to have a very early diagnosis as symptoms of developing lung cancer take months or years to notice.

    I was 1a with no spread and have had 3 chemo with 1 to go next week. lost my hair after the first one have had intense muscle pain first 5 days then it starts to ease, no sickness thankfully. Have decided to have brachytherapy which I will have 3 of then I expect checkups and scans hopefully. Been one hell of a year! but can't wish it away, had a little granddaughter Sophia born in July and expecting a grandson anytime soon. How lucky am I.
    So glad you are clear thanks for your advice best wishes Lulub
  • debrajo
    debrajo Member Posts: 1,095 Member
    #11
    lulubuddy said:

    2 primary cancers
    Hi Debrajo, Yes following my hysterectomy I had a pet scan. After surgery to remove tumour from my lung it was confirmed that it was lung cancer, the tumour was very small and am hopeful will not return. Having UPSC did in fact help me to have a very early diagnosis as symptoms of developing lung cancer take months or years to notice.

    I was 1a with no spread and have had 3 chemo with 1 to go next week. lost my hair after the first one have had intense muscle pain first 5 days then it starts to ease, no sickness thankfully. Have decided to have brachytherapy which I will have 3 of then I expect checkups and scans hopefully. Been one hell of a year! but can't wish it away, had a little granddaughter Sophia born in July and expecting a grandson anytime soon. How lucky am I.
    So glad you are clear thanks for your advice best wishes Lulub

    Hi Lulubu, I think you are
    Hi Lulubu, I think you are wise to go ahead and take the brachtherapy....IT was really very easy for me(had three treatments in one week).I was tired some, but managed to push through all of it and get things done. Why not take a little insurance now instead of waiting for the little, slimy, ba!@#tard to try and get free?! Best, debrajo
  • HellieC
    HellieC Member Posts: 524 Member
    #12
    lulubuddy said:

    brachytherapy
    Hi Sally,

    Am so glad I found you all, I've terrified myself looking on the internet at UPSC had convinced myself the cancer would beat me in the end! feeling much more in control now and not alone. have decided to have the 3 vault bachytherapy treatments offered and will tell my oncologist when I see him tomorrow. One more treatment of carboplatinum/taxol next week. then the bachytherapy.

    thank you so much there is no web sight that I could find in England to help me, so great, thanks lulub

    You're right - this is a great site
    Hi Lulub
    Glad you found this site. I am from England too and have found the ladies here to be very supportive and positive. If you have a question, there's nearly always someone who's been there before and got the t shirt!
    I have endometrial adenocarcinoma and I am currently fighting my third recurrence, so I have lived with this beast for a long time. I have found it very helpful to see what treatments are being offered to the gals in the US and to compare it with what is being suggested in the UK. There is a lot of similarity, so, for once, I think the NHS is coming up trumps and offering us everything that is currently available.
    Wishing you good health
    Helen
  • lulubuddy
    lulubuddy Member Posts: 7
    #13
    HellieC said:

    You're right - this is a great site
    Hi Lulub
    Glad you found this site. I am from England too and have found the ladies here to be very supportive and positive. If you have a question, there's nearly always someone who's been there before and got the t shirt!
    I have endometrial adenocarcinoma and I am currently fighting my third recurrence, so I have lived with this beast for a long time. I have found it very helpful to see what treatments are being offered to the gals in the US and to compare it with what is being suggested in the UK. There is a lot of similarity, so, for once, I think the NHS is coming up trumps and offering us everything that is currently available.
    Wishing you good health
    Helen

    Hi Helen, Yes great site.
    Hi Helen, Yes great site. I agree also the NHS is keeping up with developments. Keep fighting the beast! very best wishes Lulubud
  • lulubuddy
    lulubuddy Member Posts: 7
    #14
    HellieC said:

    You're right - this is a great site
    Hi Lulub
    Glad you found this site. I am from England too and have found the ladies here to be very supportive and positive. If you have a question, there's nearly always someone who's been there before and got the t shirt!
    I have endometrial adenocarcinoma and I am currently fighting my third recurrence, so I have lived with this beast for a long time. I have found it very helpful to see what treatments are being offered to the gals in the US and to compare it with what is being suggested in the UK. There is a lot of similarity, so, for once, I think the NHS is coming up trumps and offering us everything that is currently available.
    Wishing you good health
    Helen

    Hi Helen, Yes great site.
    Hi Helen, Yes great site. I agree also the NHS is keeping up with developments. Keep fighting the beast! very best wishes Lulubud

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