Confusion on side effects of vaginal brachytherapy

ptom
ptom Member Posts: 41 Member
in Gynecological Cancers (other than ovarian and uterine) #1

I am stage 1b/grade2, have had a hysterectomy including ovaries, tubes and cervix.  Have had two of five internal radiation treatments and am promised no side effects.  This isn't my first cancer rodeo, having had three other primary cancers (colon/esophageal/bladder), so I know there will be some ill effects.  My doctor is the type who thinks that if the patient isn't told what might happen then it won't happen.  Well, I just don't work that way...hope for the best, prepare for the worst is my motto.

With that being said, will someone here who knows better please share their experience and/or side effect with short term/high dose radiation?

Thanks!

PTOM

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #2
    PTOM, it is infuriating to

    PTOM, it is infuriating to hear someone would have the gall to tell someone there are "no side effects".  I throw the B.S. card.  I think that the only way that could be true would be if you WEREN'T getting any at all.  Can you dump this doc???

    I do hope some of the other gyn cancer women come over here to chime in, as I believe some of them may have experienced somethings to share.  I will tell you I had the external (IMRT) and brachy.  ON THE BRACHY you should be given a dialator to use afterwards or your vagina can/will develop stenosis and will, in effect, close up making internal exams impossible.  Most of the women have been given a plastic, "candlestick" type dialators and are told to use them 3 times a week for 10 min a day.  I followed the guidance of one of the wonderful women on the boards who suggested every day for 10 min and I can tell you it has made a difference.  It was difficult at first but now, 5 years later, I really can skip a day or two and not notice it.  

    I will say I was advised of the possibility of burning a hole in my bladder and nearly lost it.  I asked how long it would be before something like that would happen and was told 1 - 2 years AFTER treatment???  WTH!!!  

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #3
    Long term after affects

    I sought this answer out fully.   At the time of my brachytherapy, no one was able to tell me the long term effects of brachytherapy because they didn't know.  As with earlier side effects, NoTime has given you the answer for that.   Although I did not use the dialator (only for a few weeks) because really I just didn't have the time (3 small children and a job).   

    However, since then, I can tell you of at least one or two LONG-TERM effects of brachytherapy.   I developed a left ureter blockage causing me to have hydroureternephrosis.   My urologist indicated that this was from the brachytherapy.   I ended up needing a ureter stent.   I also developed a mass (or scarring) which was also causing the blockage.    I got tired of having the stent replaced every 3 months (which I had to do) so I ended up getting a reimplantment surgery for my ureter.   

    Recently I have developed daily pain which they believe is just scarring and are now referring me to a pain clinic.   However, I just had a biopsy and am waiting the results.  I should have them back Monday or Tuesday.   Please note, however, that it has been 11 years since my brachytherapy.

    Quick answer for long-term brachytherapy: (for me)

    1.   Scarring

    2.   Blockages

    3.   Pain from scarring

    4.  Scarring attached to my bladder, rectum, etc.

     

    With the procedure, itself, there really was no issue, except for the initial visit where you have to be fitted.  For me, it was a little embarrassing, but I got through it.  The brachytherapy itself only took less than 30 mintues from set up to finish.   I know places do it differently though.

    My best to you.

    Kathy

  • laranuque
    laranuque Member Posts: 2
    #4
    Need advice


    Diagnosis: Endometrial Adenocarcinoma Figo 2, Grade 2. Hi newbie here! I’m 37 yrs old (single, no kids, never been pregnant) i am 25 days post op from Radical hysterectomy with bilateral salpingo-oophorectomy, invading less than half of the myometruim. The tumor has inflitrated the enocervical stroma ( this is my histopahtology report). It has not spread to my lymph nodes, ovaries, fallopian tubes.I’m seeing my gyno-onco on  to discuss treatment. I am still realing from all of this. And honestly i’m having anxiety about the treatment i will go through. Based on my research Brachytheraphy for Stage 2. Would i undergo Chemo?I need insights and information on this. Please anyone can share their experience with me

  • abrub
    abrub Member Posts: 2,174 Member
    #5
    The more I hear...

    I was offered brachytherapy a year ago as something that *might* eradicate the remaining cancer cells in my vaginal tissues, but that had never been used for my type of cancer (appendiceal, with mets to the vagina, which had never been seen before.)  My cancer is slow-growing; the recurrence tumor took 9 years to grow.  The radiologist wanted me to do it "What do you have to lose?"  Fortunately, my appendiceal surgical oncologist (who sent me to the radiologist for some options) pointed out that the affected tissue was next to a ureter and my colon (his having just been in there to remove the solid tumor, but unable to remove the scattered cells.)  He was concerned about damage to those organs plus vaginal damage.  (My husband and I remain sexually active.)  With such a slow-growing cancer, he/we opted not to do the brachytherapy, because in my case it was too much of a long shot.  The more I read, the happier I am with my decision.

    That said, it would be different if my cancer were one that had proven benefits from brachytherapy AND my cancer was likely to grow back quickly.  You need to weigh what it will buy against what harm it will do.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #6
    laranuque said:

    Need advice


    Diagnosis: Endometrial Adenocarcinoma Figo 2, Grade 2. Hi newbie here! I’m 37 yrs old (single, no kids, never been pregnant) i am 25 days post op from Radical hysterectomy with bilateral salpingo-oophorectomy, invading less than half of the myometruim. The tumor has inflitrated the enocervical stroma ( this is my histopahtology report). It has not spread to my lymph nodes, ovaries, fallopian tubes.I’m seeing my gyno-onco on  to discuss treatment. I am still realing from all of this. And honestly i’m having anxiety about the treatment i will go through. Based on my research Brachytheraphy for Stage 2. Would i undergo Chemo?I need insights and information on this. Please anyone can share their experience with me

    laranuque - it is completely

    laranuque - it is completely understandable to be reeling!!  It is very overwhelming.  As far as adjunct therapy goes it is good to hear you are working with a gynecologic oncologist as they receive additional traning to help with 'below the belt' cancers.

    Especially if your cancer is one of the aggressive ones by nature they will probably recommend chemo and radiation.  (I was uterine papillary serous carcinoma (Grade 3 - aggressive) Stage 1A) and had both.  It is scary - very scary - and you will always have the option to take it or not, but I chose to do whatever to get rid of all the cancer.  After reading all the posts by the women over the years it is typically 6 rounds of carboplatin and taxol every 3 weeks apart.  Sometimes it is broken up 3, then radiation, then the last 3, but some have had all their chemo at once - it will be based on what your gyn onc considers the best approach.

    I would recommend taking trying to take a breath and take someone with you who can write notes for you as you listen to the doctor - plus it will be two sets of ears.  There are also a lot of women on the Uterine board who will jump in and give you support.  Some of the women 'visit' the other gyn threads on the site - but you are not alone.

     

     

  • laranuque
    laranuque Member Posts: 2
    #7
    NoTimeForCancer said:

    laranuque - it is completely

    laranuque - it is completely understandable to be reeling!!  It is very overwhelming.  As far as adjunct therapy goes it is good to hear you are working with a gynecologic oncologist as they receive additional traning to help with 'below the belt' cancers.

    Especially if your cancer is one of the aggressive ones by nature they will probably recommend chemo and radiation.  (I was uterine papillary serous carcinoma (Grade 3 - aggressive) Stage 1A) and had both.  It is scary - very scary - and you will always have the option to take it or not, but I chose to do whatever to get rid of all the cancer.  After reading all the posts by the women over the years it is typically 6 rounds of carboplatin and taxol every 3 weeks apart.  Sometimes it is broken up 3, then radiation, then the last 3, but some have had all their chemo at once - it will be based on what your gyn onc considers the best approach.

    I would recommend taking trying to take a breath and take someone with you who can write notes for you as you listen to the doctor - plus it will be two sets of ears.  There are also a lot of women on the Uterine board who will jump in and give you support.  Some of the women 'visit' the other gyn threads on the site - but you are not alone.

     

     

    Support

    hi. thanks for the reply, the waiting is the worst for me though. i’ve been informing myself as much as i can, reading up on latest journal/trials. I would be asking mu Onco about these information and discuss my treatment option. It’s really a comfort the support and info these forums provide Coz it’s first hand and women have been through it and survived. Any recurrence in your case?

  • Soup52
    Soup52 Member Posts: 908 Member
    #8
    Hi, I’m from the uterine

    Hi, I’m from the uterine board. I was diagnosed with endometrial clear cell 3C. My cancer was also in both ovaries , 3 lymph nodes, and in the pelvic wash. I had 5 weeks of external radiation and 3 internal . My side effects - chronic constipation  painful internal exams . I’m the poster child of not being good about using the diLator regularly . I ordered cool cone diLTors off the Internet. Somewhat better but not great. My husband and I haven’t had sex in quite sometime, but having sex regularly is supposed to help also. My husband has prostate Cancer and is on hormone treatments, so that would make sex difficult also. Even though the side effects aren’t wonderful, I’m thankful to be alive and so far I’m clear of Cancer. I also had 6 rounds of carbo/taxol ending July 2016.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #9
    laranuque said:

    Support

    hi. thanks for the reply, the waiting is the worst for me though. i’ve been informing myself as much as i can, reading up on latest journal/trials. I would be asking mu Onco about these information and discuss my treatment option. It’s really a comfort the support and info these forums provide Coz it’s first hand and women have been through it and survived. Any recurrence in your case?

    I am very fortunate - I have

    I am very fortunate - I have not had a recurrence and coming up on 5 years from my end of treatment.  

    Where do you live?  It sounds like you may be in Europe?

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #10
    laranuque said:

    Need advice


    Diagnosis: Endometrial Adenocarcinoma Figo 2, Grade 2. Hi newbie here! I’m 37 yrs old (single, no kids, never been pregnant) i am 25 days post op from Radical hysterectomy with bilateral salpingo-oophorectomy, invading less than half of the myometruim. The tumor has inflitrated the enocervical stroma ( this is my histopahtology report). It has not spread to my lymph nodes, ovaries, fallopian tubes.I’m seeing my gyno-onco on  to discuss treatment. I am still realing from all of this. And honestly i’m having anxiety about the treatment i will go through. Based on my research Brachytheraphy for Stage 2. Would i undergo Chemo?I need insights and information on this. Please anyone can share their experience with me

    Hi laranuque:

    Hi laranuque:

    I was diagnosed with Grade 2, Stage 3a endometrial adenocarcinoma in Sept of 2005.   I did go for the chemo.  It was my choice.  However, I did have cancer in my left ovary, uterus and cervix.  After the chemo, I did have brachytherapy.   I had a small recurrence in 2010 of which I just had surgery.  They removed a lymph node with microscopic cells.  I did not do treatment.  Just a wait and see.   I did have a ureter blockage from the brachytherapy in 2015.   But other than some soft tissue masses, nothing else has shown up.

  • Laverne3
    Laverne3 Member Posts: 1
    #11
    Endo. cancer

    I had inernal radiation. and chemo,butt my concern is the frequent bladder infection I am assuning come from radition.  I cannot use the dilator because of the infection because I am afraid the infection will spread.  Have anyone else had this problem?  Please help.

  • hurriedh
    hurriedh Member Posts: 1
    #12
    Soup52 said:

    Hi, I’m from the uterine

    Hi, I’m from the uterine board. I was diagnosed with endometrial clear cell 3C. My cancer was also in both ovaries , 3 lymph nodes, and in the pelvic wash. I had 5 weeks of external radiation and 3 internal . My side effects - chronic constipation  painful internal exams . I’m the poster child of not being good about using the diLator regularly . I ordered cool cone diLTors off the Internet. Somewhat better but not great. My husband and I haven’t had sex in quite sometime, but having sex regularly is supposed to help also. My husband has prostate Cancer and is on hormone treatments, so that would make sex difficult also. Even though the side effects aren’t wonderful, I’m thankful to be alive and so far I’m clear of Cancer. I also had 6 rounds of carbo/taxol ending July 2016.

    cervical cancer 2A

    I had 16 external and 2 internal (2 day hospital stay for each dose) radiation treatments.  My vagina quickly closed up.  I used the candlestick dilators and I used tissue expanders like a balloon you stick up your vagina and pump in with air.  I think it is similar to a breast tissue expander.  I am married and haven't had sex in about 15 years.  Sometimes I am very frustrated with what this "easy, oh they just burn the cells off" cancer took from me.  I am so glad I found your post and this thread.  It doesn't really come up in conversation much that you can't have sex because you lost your vagina to cancer treatments.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #13
    hurriedh said:

    cervical cancer 2A

    I had 16 external and 2 internal (2 day hospital stay for each dose) radiation treatments.  My vagina quickly closed up.  I used the candlestick dilators and I used tissue expanders like a balloon you stick up your vagina and pump in with air.  I think it is similar to a breast tissue expander.  I am married and haven't had sex in about 15 years.  Sometimes I am very frustrated with what this "easy, oh they just burn the cells off" cancer took from me.  I am so glad I found your post and this thread.  It doesn't really come up in conversation much that you can't have sex because you lost your vagina to cancer treatments.

    hurriedh, there has to be a

    hurriedh, there has to be a place you can meet other people who have gone through a similar experience and can talk about anything.  I am guessing you are 15 years NED?  That is wonderful.  

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #14
    Laverne3 said:

    Endo. cancer

    I had inernal radiation. and chemo,butt my concern is the frequent bladder infection I am assuning come from radition.  I cannot use the dilator because of the infection because I am afraid the infection will spread.  Have anyone else had this problem?  Please help.

    Laverne3, I don't think you

    Laverne3, I don't think you should assume radiation is a guarantee bladder infection.  Since the dialator is only used in the vagina and you clean it after each use, it shouldn't be the cause of a UTI.  What do you mean, "I am afraid the infection will spread"?  Please come back so we can help you wiith your questions.  We just want to understand what you are asking.

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