Chemo plus radiation vs Chemo without radiation for Stage IIIC uterine cancer?

Hi all,

My mom was diagnosed in Feb of this year with Stage III C1, grade 3 uterine cancer. They initially thought that they had found it early but during her hysterectomy, they found the cancer in 3 out of 19 lymph nodes. She recovered very quickly from her surgery and began chemo (paclitaxel + carboplatin) in mid-March. She just had her 4th treatment (out of 6) and so far is doing really well. Her side effects from the chemo have not been too bad - mainly constipation, mild body aches a few days after her treatment, and of course, hair loss. She is not scheduled to receive radiation at this point (her onc wanted to wait and see how she did with the chemo) and she is obviously looking forward to being done with her treatment, but from what I have read online, it sounds like patients who get radiation in combination with chemo often have a better prognosis than those who only receive chemo. I know my mom won't welcome the thought of more treatment but if it is going to help her chances, I really want to encourage her to go for it.

A few questions for anyone who may have faced a similar situation:
1) Is radiation typically done in combo with chemo for patients with an advanced high grade cancer like my mom's?
2) How severe are the side effects from radiation, particularly for patients who have recently gone through chemo?
3) What determines whether you receive brachytherapy vs external radiation? It seems like side effects from brachytherapy are more minimal than external radiation; can it be used in all cases and is it thought to be as effective?

Also, what is the standard way to monitor the cancer's progress (or hopefully lack thereof!) after treatment? The onc told us that it would be scans because there are no reliable blood markers for her cancer, but I seem to see a lot of references to CA125 on uterine forums. Is CA125 a reliable marker for uterine cancer?

Many thanks to anyone who may have some input on these questions - and best wishes to those of you who are going through this right now!

Stacey

Comments

  • LaurelWillow
    LaurelWillow Member Posts: 13
    Additional Treatment
    Hi Stacey,

    CA 125 is not realiable in your mom's case. It works for some women but usually not for endometrial (uterine) cancer. Since she is a high grade cancer she needs aggressive treatment as her chances of relapse are high. Now is the time to check out second opinions and should she need follow-up treatment or surgery consider using a chemo assay lab to assess what types of treatment will work. I don't want to scare you but you have to start preparing to help manage your mom's disease as curing it is not likely.

    Depending on where the cancer spread radiation may be an option. Again, seek out a good second opinion with an aggressive team.

    Best wishes.
  • LizGrrr
    LizGrrr Member Posts: 127 Member
    What can Mom's body tolerate?
    I can't speak for everyone, but my gyn/onc's approach is be as aggressive as possible as soon as possible because there's one chance to get this in the beginning. According to my doc, I had a 65% chance of recurrence (IA) after surgery and 3 chemos; 50% after 25 rad tx; 15% after 25 rad tx + 3 more chemo tx.

    However, I'm young (45) and have tolerated this fairly well (what's a little lymphedema, bone pain, constipation, c diff, blood clot, insomnia among friends). If your mom's in fragile health that would be a consideration.

    My radiation was external, mostly because I refused internal (the long-term effects were unacceptable to me). But overall it was no big deal.

    To me I'd ask what mom's body can tolerate. Sometimes the treatment worsens the disease. Keep vigilant on her condition and don't let any medical staff pooh-pooh your concerns.

    Liz in Dallas
  • runwithloki
    runwithloki Member Posts: 16
    LizGrrr said:

    What can Mom's body tolerate?
    I can't speak for everyone, but my gyn/onc's approach is be as aggressive as possible as soon as possible because there's one chance to get this in the beginning. According to my doc, I had a 65% chance of recurrence (IA) after surgery and 3 chemos; 50% after 25 rad tx; 15% after 25 rad tx + 3 more chemo tx.

    However, I'm young (45) and have tolerated this fairly well (what's a little lymphedema, bone pain, constipation, c diff, blood clot, insomnia among friends). If your mom's in fragile health that would be a consideration.

    My radiation was external, mostly because I refused internal (the long-term effects were unacceptable to me). But overall it was no big deal.

    To me I'd ask what mom's body can tolerate. Sometimes the treatment worsens the disease. Keep vigilant on her condition and don't let any medical staff pooh-pooh your concerns.

    Liz in Dallas

    Tolerating treatment
    Thanks for the input. My mom just turned 67 and is otherwise in excellent health- very fit, eats well, exercises regularly, etc. so far, she has been tolerating her treatments very well. I'm of the same mindset- I think she should be more aggressive now to reduce her chances of recurrence. How severe were the side effects from external radiation?
  • LizGrrr
    LizGrrr Member Posts: 127 Member

    Tolerating treatment
    Thanks for the input. My mom just turned 67 and is otherwise in excellent health- very fit, eats well, exercises regularly, etc. so far, she has been tolerating her treatments very well. I'm of the same mindset- I think she should be more aggressive now to reduce her chances of recurrence. How severe were the side effects from external radiation?

    External rad side fx
    Side effects are cumulative, and the first 2-3 weeks were no biggie. The fatigue does grow and lingers a while after last treatment. It's manageable tho.

    Skin discomfort is common though I didn't experience it

    Hello, diarrhea! Bowels will be faster and looser. I also got a c diff infection that made me pass green water but antibiotics cured that

    UTIs are common but I didn't get any

    Vaginal dryness is common and I've been cautioned that KY will keep me happy. So far I haven't noticed anything but I'm also not having sex at the moment

    Pubic hair will fall out but I consider that a benefit rather than a side effect.

    Hth,
    Liz
  • mollymuch
    mollymuch Member Posts: 18
    1) Get a second opinion if
    1) Get a second opinion if at all possible. I had stage 3(c) low grade and got many (5 I think, when you include radiation specialists) - each was slightly different, well informed and based in current research, and I had to do a lot of thinking to find my path. One doctor said that they no longer think radiation is necessary, another said the older research was still valid, etc.

    2) I went for it all - had chemo and both forms of radiation, external and brachy. Vaginal stenosis - shrinking from scar tissue - is an ongoing problem for me, almost two years out. I hate dilating and didn't expect to as much as I do. Am not currently sexually active, but I'm 44 so I need to keep my options open - plus, even a speculum can hurt. My drs underplayed this issue as far as I'm concerned - I think their assumption was that having sex would sort it out. Overall, I disliked radiation more than chemo because of the nausea and tiredness and it lasted longer. I worked my way through both, taking a few days off to recover from chemo but not with radiation because it just goes on and on, so that may have something to do with it.

    Side effects for external pelvic radiation mostly went away in the first year - diarrhea.

    I'd still make the same decision again because I really want to live. But radiation for me was not a small thing.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    mollymuch said:

    1) Get a second opinion if
    1) Get a second opinion if at all possible. I had stage 3(c) low grade and got many (5 I think, when you include radiation specialists) - each was slightly different, well informed and based in current research, and I had to do a lot of thinking to find my path. One doctor said that they no longer think radiation is necessary, another said the older research was still valid, etc.

    2) I went for it all - had chemo and both forms of radiation, external and brachy. Vaginal stenosis - shrinking from scar tissue - is an ongoing problem for me, almost two years out. I hate dilating and didn't expect to as much as I do. Am not currently sexually active, but I'm 44 so I need to keep my options open - plus, even a speculum can hurt. My drs underplayed this issue as far as I'm concerned - I think their assumption was that having sex would sort it out. Overall, I disliked radiation more than chemo because of the nausea and tiredness and it lasted longer. I worked my way through both, taking a few days off to recover from chemo but not with radiation because it just goes on and on, so that may have something to do with it.

    Side effects for external pelvic radiation mostly went away in the first year - diarrhea.

    I'd still make the same decision again because I really want to live. But radiation for me was not a small thing.

    my experience
    I also have a high grade uterine cancer - originally stage 3a uterine papillary serous carcinoma (UPSC).

    For me, the ca125 has been a reliable marker (UPSC acts like ovarian cancer) though for many it is not. My doctor did NOT recommend the pelvic radiation for me and I do not regret following his advice - he said there was "no science" to justify it - even though it seems most doctors do recommend the aggressive approach.

    I admire my doctor's thinking - give enough treatment but not too much. Last time we discussed options he said he does not believe in using a cannon when a bullet will work. Chemo and radiation are severe assaults on our bodies. The body tries to heal itself and we are trying to avoid doing irreparable damage to my body in the process of killing off cancer when a less toxic approach may give the same result.

    I've been on this site for over three years and even people with aggressive treatment have recurred (even stage 1) so I really don't think aggressive treatment is any guarantee. I often wonder if it makes the DOCTOR feel better - that THEY've done everything possible.

    I also have recurred - twice - and the ca125 helped alert this in addition to routine scans. First recurrence was successfully treated with chemo and radiation in neck (supraclavicular lymph nodes) and second is now being treated with aromatase inhibitor medication (hormone treatment) for lymph node recurrence in paraortic & pelvic nodes. I've got my fingers crossed. I have excellent quality of life.

    Bottom line. Your mother needs to gather all the facts and consult trusted people and then make a decision that she is comfortable with.

    I hope all goes well. Mary Ann
  • snowbird_11
    snowbird_11 Member Posts: 160

    Tolerating treatment
    Thanks for the input. My mom just turned 67 and is otherwise in excellent health- very fit, eats well, exercises regularly, etc. so far, she has been tolerating her treatments very well. I'm of the same mindset- I think she should be more aggressive now to reduce her chances of recurrence. How severe were the side effects from external radiation?

    Just one more bit of input
    Just one more bit of input -- I was a Grade 3 uterine (UPSC) but more advanced Stage IVB. Radiation is considered most beneficial in preventing recurrences if it is believed that all cancer is contained in pelvic area as most lower stages are. It is a localized treatment as opposed to the systemic nature of chemotherapy. Also, once radiation is given in the area, it cannot be used again in same area should there be a recurrence. In my case, it was known that the cancer had spread further afield and it was felt best to save radiation should I have a local recurrence. Since up until now (4 yrs post surgery/first line chemotherapy), recurrences have only been beyond pelvic area, optimal debulking surgery had been effective in pelvic area. It was cells that had spread beyond and were able to survive chemo that caused recurrences. It might help to request a consult with a radiation oncologist for an opinion as well. Your mother's good health should allow her to tolerate treatment but should be done only if benefits do outweigh long term side effects.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    daisy366 said:

    my experience
    I also have a high grade uterine cancer - originally stage 3a uterine papillary serous carcinoma (UPSC).

    For me, the ca125 has been a reliable marker (UPSC acts like ovarian cancer) though for many it is not. My doctor did NOT recommend the pelvic radiation for me and I do not regret following his advice - he said there was "no science" to justify it - even though it seems most doctors do recommend the aggressive approach.

    I admire my doctor's thinking - give enough treatment but not too much. Last time we discussed options he said he does not believe in using a cannon when a bullet will work. Chemo and radiation are severe assaults on our bodies. The body tries to heal itself and we are trying to avoid doing irreparable damage to my body in the process of killing off cancer when a less toxic approach may give the same result.

    I've been on this site for over three years and even people with aggressive treatment have recurred (even stage 1) so I really don't think aggressive treatment is any guarantee. I often wonder if it makes the DOCTOR feel better - that THEY've done everything possible.

    I also have recurred - twice - and the ca125 helped alert this in addition to routine scans. First recurrence was successfully treated with chemo and radiation in neck (supraclavicular lymph nodes) and second is now being treated with aromatase inhibitor medication (hormone treatment) for lymph node recurrence in paraortic & pelvic nodes. I've got my fingers crossed. I have excellent quality of life.

    Bottom line. Your mother needs to gather all the facts and consult trusted people and then make a decision that she is comfortable with.

    I hope all goes well. Mary Ann

    Annie's comments make sense to me.
    My pre-treatment PET scan showed activity in distant lymph nodes and that's where my recurrences have been - not in pelvic area. I do not think radiation would have helped eliminate my recurrences.

    Cancer treatment is a very inexact science. Doctors have guidelines and protocols and do the best they can but cancer often is not a very cooperative entity!!!
  • RoseyR
    RoseyR Member Posts: 471 Member
    Some Tips on Pelvic Radiation

    Stacey,

    I too was diagnosed with grade 3 uterine cancer although stage IB.

    Initially it was recommended that I have (along with six rounds of taxol/carboplatin) both internal and external pelvic radiation.
    When I finished my 25 treatments of external radiation, however, my radiological oncologist said she didn't think I'd need brachytherapy (vaginal vault radiation) for two reasons:

    My tumor had not been not that close to my cervix.

    Reurrences of my kind of cancer (carcinosarcoma) would be less likely in the vaginal vault than other parts of my pelvis or distant organs.

    So whether to use brachytherapy depends on two elements: how close the tumor was to the cervix and the KIND of tumor you had and its typical spreading patterns.

    By the way: I had so side effects at all from my 25 pelvic radiation sessions, not even fatigue. However, this may be for the following reasons:

    I had IMRT (intensity-modulated radiation therapy), which has fewer side effects than the old form of radiation.

    I was seeing an integrative doctor at the time, who prescribed the following to avoid damage to my intestines:

    glutamine (one teaspoon in a glass of water two to three times a day)

    curcumin (50 milligrams, three times a day)

    fish oil (two teaspoons a day)

    90 mgs of zinc JUST DURING RADIATION (this is too high a dose to continue for long periods but studies show that chelated zinc can prevent damage to mucosal linings in the mouth and throat for patients undergoing brain radiation. From these studies my doctor extrapolated a similalry protetive role for zinc during pelvic radiation. Nature's Way is a good brand for chelated zinc. (But take it with 1-2 multivitamins a day; PURE makes a brand without copper or iron, two minerals that cancer patients should avoid in all supplements.)

    A final tip: one way to avoid damage to intestines is to drink as much water as possible 15-20 minutes before each radiation session. And try to drink approximately the same amount each time--esp when you have your "test run" (photos that are taken to set up the radiation, called a "simulation." Remember how much you drank before the simulation and try to drink about the same amount before each real session. And don't worry about "leaking" or an "accident": my bladder isn't the greatest anymore but so what if you have an "accident" even on the table? What is more important--your pride or your quality of life after radiation? Many of the best centers TELL their patients to drink at least one small bottle of water beforehand; others refrain from doing so because (in my opinion) they can't always predict within minutes when your session will be each day (they sometimes run a little late) so don't want to cause "anxiety," as my center told me. I'd drink the water no matter what (you can test how much you can hold; each radiation session is about 20 minutes--and perhaps you'll wait for it ten to twenty minutes. Bottom line: remember how much you drank before the simulation and keep drinking that amount before each REAL session. That will help them target your pelvic region most accurately.

    Finally: a macrobiotic chef I know--and serious student of macrobiotics who had helped a relative through radiation--advised me to eat miso soup every day during radiation: one to two small bowls a day. The seaweed in it (wakame) ALSO protects against radiation damage. He also advised me to eat cooked greens (spinach, kale, etc) nearly every day during radation.

    Having done all these things, I experienced no bowel distress or even fatigue during radiation. My doctors were pretty amazed. And my integrative doctor was careful not to prescribe any supplement that would interfere with radiation's efectivenss; indeed, curcium and vitamin E succinate (600-800 mgs a day) have been found in many studies to enhance it.

    Best,
    Rosey
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    RoseyR said:

    Some Tips on Pelvic Radiation

    Stacey,

    I too was diagnosed with grade 3 uterine cancer although stage IB.

    Initially it was recommended that I have (along with six rounds of taxol/carboplatin) both internal and external pelvic radiation.
    When I finished my 25 treatments of external radiation, however, my radiological oncologist said she didn't think I'd need brachytherapy (vaginal vault radiation) for two reasons:

    My tumor had not been not that close to my cervix.

    Reurrences of my kind of cancer (carcinosarcoma) would be less likely in the vaginal vault than other parts of my pelvis or distant organs.

    So whether to use brachytherapy depends on two elements: how close the tumor was to the cervix and the KIND of tumor you had and its typical spreading patterns.

    By the way: I had so side effects at all from my 25 pelvic radiation sessions, not even fatigue. However, this may be for the following reasons:

    I had IMRT (intensity-modulated radiation therapy), which has fewer side effects than the old form of radiation.

    I was seeing an integrative doctor at the time, who prescribed the following to avoid damage to my intestines:

    glutamine (one teaspoon in a glass of water two to three times a day)

    curcumin (50 milligrams, three times a day)

    fish oil (two teaspoons a day)

    90 mgs of zinc JUST DURING RADIATION (this is too high a dose to continue for long periods but studies show that chelated zinc can prevent damage to mucosal linings in the mouth and throat for patients undergoing brain radiation. From these studies my doctor extrapolated a similalry protetive role for zinc during pelvic radiation. Nature's Way is a good brand for chelated zinc. (But take it with 1-2 multivitamins a day; PURE makes a brand without copper or iron, two minerals that cancer patients should avoid in all supplements.)

    A final tip: one way to avoid damage to intestines is to drink as much water as possible 15-20 minutes before each radiation session. And try to drink approximately the same amount each time--esp when you have your "test run" (photos that are taken to set up the radiation, called a "simulation." Remember how much you drank before the simulation and try to drink about the same amount before each real session. And don't worry about "leaking" or an "accident": my bladder isn't the greatest anymore but so what if you have an "accident" even on the table? What is more important--your pride or your quality of life after radiation? Many of the best centers TELL their patients to drink at least one small bottle of water beforehand; others refrain from doing so because (in my opinion) they can't always predict within minutes when your session will be each day (they sometimes run a little late) so don't want to cause "anxiety," as my center told me. I'd drink the water no matter what (you can test how much you can hold; each radiation session is about 20 minutes--and perhaps you'll wait for it ten to twenty minutes. Bottom line: remember how much you drank before the simulation and keep drinking that amount before each REAL session. That will help them target your pelvic region most accurately.

    Finally: a macrobiotic chef I know--and serious student of macrobiotics who had helped a relative through radiation--advised me to eat miso soup every day during radiation: one to two small bowls a day. The seaweed in it (wakame) ALSO protects against radiation damage. He also advised me to eat cooked greens (spinach, kale, etc) nearly every day during radation.

    Having done all these things, I experienced no bowel distress or even fatigue during radiation. My doctors were pretty amazed. And my integrative doctor was careful not to prescribe any supplement that would interfere with radiation's efectivenss; indeed, curcium and vitamin E succinate (600-800 mgs a day) have been found in many studies to enhance it.

    Best,
    Rosey

    Chemo/Radiation
    Hi there.

    I was diagnosed Feb 2010 with Uterine Cancer Stage IIIC.I was 45.

    I had surgery-complete hysterectomy and removal of aorta lymph nodes. I had sandwich therapy.
    Three chemos, three weeeks apart, followed by 25 radiations (5 times a week for 5 weeks) and then three more chemos, three weeks apart.

    I am considered to be no evidence of disease thus far.

    My doctor monitors me with CA125 blood tests.

    It was a good marker test for me because a CA125 was taken following surgery.
    It is not a good marker for all. Mine was 200 after surgery and last tested at a 6 in April 2012. Normal is 0-35.

    Peace and healing!
  • Barcan
    Barcan Member Posts: 1

    Chemo/Radiation
    Hi there.

    I was diagnosed Feb 2010 with Uterine Cancer Stage IIIC.I was 45.

    I had surgery-complete hysterectomy and removal of aorta lymph nodes. I had sandwich therapy.
    Three chemos, three weeeks apart, followed by 25 radiations (5 times a week for 5 weeks) and then three more chemos, three weeks apart.

    I am considered to be no evidence of disease thus far.

    My doctor monitors me with CA125 blood tests.

    It was a good marker test for me because a CA125 was taken following surgery.
    It is not a good marker for all. Mine was 200 after surgery and last tested at a 6 in April 2012. Normal is 0-35.

    Peace and healing!

    side effects
    hopefulgirl1
    So happy for your success. I was wondering if you had any residual side effects from the chemo or radiation. Our scenarios are so very similar. I was diagnosed in Dec. 09. I did the exact treatment and so far so good. I was wondering if you have the same residuals. Would love to compare. I'm 57.
  • Royce1
    Royce1 Member Posts: 24 Member
    I had the same questions!
    Hi Stacey! We have several things in common! You are asking some of the same questions I asked about my Mom. She has UPSC grade 3, stage 1A. I don't know if that's the type of uterine cancer you Mom has on not, but my Mom just finished her chemo and her doctor wants her to get six brachytheraphys. This is her recommendation, we have not spoken to a radiation oncologist yet. My Mom had an appointment this week but she cancelled because, just like your Mom, she really just wants to be finished with all treatments! But I, like you, want her to get the best treatments she can for her particular type of cancer. She's 65, almost 66 and has multiple health problems including pulmonary embolism(from the cancer or chemo) and kidney problems. I'm just afraid she won't tolerate anymore treatments at this time, but I'd like for us to at least talk to a radiation oncologist, to see what he has to say. Most women on this board usually get 3 brachytheraphy treatments, so I don't know why her doctor is recommending 6? I wish the best for you and your Mom. I hope and pray you've found the right answers to your questions! Take care!
  • fanniemay
    fanniemay Member Posts: 53
    Royce1 said:

    I had the same questions!
    Hi Stacey! We have several things in common! You are asking some of the same questions I asked about my Mom. She has UPSC grade 3, stage 1A. I don't know if that's the type of uterine cancer you Mom has on not, but my Mom just finished her chemo and her doctor wants her to get six brachytheraphys. This is her recommendation, we have not spoken to a radiation oncologist yet. My Mom had an appointment this week but she cancelled because, just like your Mom, she really just wants to be finished with all treatments! But I, like you, want her to get the best treatments she can for her particular type of cancer. She's 65, almost 66 and has multiple health problems including pulmonary embolism(from the cancer or chemo) and kidney problems. I'm just afraid she won't tolerate anymore treatments at this time, but I'd like for us to at least talk to a radiation oncologist, to see what he has to say. Most women on this board usually get 3 brachytheraphy treatments, so I don't know why her doctor is recommending 6? I wish the best for you and your Mom. I hope and pray you've found the right answers to your questions! Take care!

    radiation and/or chemo
    I did a lot of research on this before my treatments started. They now recommend 6 chemos plus 3 radiations for all UPSC, even 1A. That comes from realizing that radiation alone is not enough. I had to stop at 5 chemos because I got very sick from the 5th. My dr. said 5 is plenty. Radiation was harder for me than I thought it would be. Burning and pain from the catheter and cylinder, but it only lasts about an hour and when they remove the inserts everything is fine again. I am dreading to go for my last one on THursday, but I know I have to do it. I am not a big beliver in alternative therapy. If you are seeing a gyno/oncologist, they know what works. God bless you and your mom, EDith
  • runwithloki
    runwithloki Member Posts: 16
    RoseyR said:

    Some Tips on Pelvic Radiation

    Stacey,

    I too was diagnosed with grade 3 uterine cancer although stage IB.

    Initially it was recommended that I have (along with six rounds of taxol/carboplatin) both internal and external pelvic radiation.
    When I finished my 25 treatments of external radiation, however, my radiological oncologist said she didn't think I'd need brachytherapy (vaginal vault radiation) for two reasons:

    My tumor had not been not that close to my cervix.

    Reurrences of my kind of cancer (carcinosarcoma) would be less likely in the vaginal vault than other parts of my pelvis or distant organs.

    So whether to use brachytherapy depends on two elements: how close the tumor was to the cervix and the KIND of tumor you had and its typical spreading patterns.

    By the way: I had so side effects at all from my 25 pelvic radiation sessions, not even fatigue. However, this may be for the following reasons:

    I had IMRT (intensity-modulated radiation therapy), which has fewer side effects than the old form of radiation.

    I was seeing an integrative doctor at the time, who prescribed the following to avoid damage to my intestines:

    glutamine (one teaspoon in a glass of water two to three times a day)

    curcumin (50 milligrams, three times a day)

    fish oil (two teaspoons a day)

    90 mgs of zinc JUST DURING RADIATION (this is too high a dose to continue for long periods but studies show that chelated zinc can prevent damage to mucosal linings in the mouth and throat for patients undergoing brain radiation. From these studies my doctor extrapolated a similalry protetive role for zinc during pelvic radiation. Nature's Way is a good brand for chelated zinc. (But take it with 1-2 multivitamins a day; PURE makes a brand without copper or iron, two minerals that cancer patients should avoid in all supplements.)

    A final tip: one way to avoid damage to intestines is to drink as much water as possible 15-20 minutes before each radiation session. And try to drink approximately the same amount each time--esp when you have your "test run" (photos that are taken to set up the radiation, called a "simulation." Remember how much you drank before the simulation and try to drink about the same amount before each real session. And don't worry about "leaking" or an "accident": my bladder isn't the greatest anymore but so what if you have an "accident" even on the table? What is more important--your pride or your quality of life after radiation? Many of the best centers TELL their patients to drink at least one small bottle of water beforehand; others refrain from doing so because (in my opinion) they can't always predict within minutes when your session will be each day (they sometimes run a little late) so don't want to cause "anxiety," as my center told me. I'd drink the water no matter what (you can test how much you can hold; each radiation session is about 20 minutes--and perhaps you'll wait for it ten to twenty minutes. Bottom line: remember how much you drank before the simulation and keep drinking that amount before each REAL session. That will help them target your pelvic region most accurately.

    Finally: a macrobiotic chef I know--and serious student of macrobiotics who had helped a relative through radiation--advised me to eat miso soup every day during radiation: one to two small bowls a day. The seaweed in it (wakame) ALSO protects against radiation damage. He also advised me to eat cooked greens (spinach, kale, etc) nearly every day during radation.

    Having done all these things, I experienced no bowel distress or even fatigue during radiation. My doctors were pretty amazed. And my integrative doctor was careful not to prescribe any supplement that would interfere with radiation's efectivenss; indeed, curcium and vitamin E succinate (600-800 mgs a day) have been found in many studies to enhance it.

    Best,
    Rosey

    Thanks, Rosey, for the very
    Thanks, Rosey, for the very helpful information! I know that it'll do my mom good to know that the side effects from radiation might not be so horrible in the grand scheme of things. She did extremely well with her chemo- very few side effects and generally feeling quite good throughout. In fact, she just had her last treatment today, right on schedule! I know that she just wants to be done with her treatment but I'm hoping that she gets some more info from her oncologist about what her best options are. Thanks so much for all the info- I will certainly pass it on if the plan calls for radiation.
    Hope that you are doing well!
    Stacey
  • tinapal
    tinapal Member Posts: 2
    edited September 2018 #16
    fanniemay said:

    radiation and/or chemo
    I did a lot of research on this before my treatments started. They now recommend 6 chemos plus 3 radiations for all UPSC, even 1A. That comes from realizing that radiation alone is not enough. I had to stop at 5 chemos because I got very sick from the 5th. My dr. said 5 is plenty. Radiation was harder for me than I thought it would be. Burning and pain from the catheter and cylinder, but it only lasts about an hour and when they remove the inserts everything is fine again. I am dreading to go for my last one on THursday, but I know I have to do it. I am not a big beliver in alternative therapy. If you are seeing a gyno/oncologist, they know what works. God bless you and your mom, EDith

    Fanniemat

    I am like you. I had radiation and 5 of the chemo done.  Suppose to have my last chemo done next week. But I am so sick. Don’t want to do it!!!  My doctor can’t tell me yes or no.  Has to be my decision. Just hard!!  So glad you are doing good!!! Just confused here.  I just got to believe 5 Is enough 

  • cmb
    cmb Member Posts: 1,001 Member
    tinapal said:

    Fanniemat

    I am like you. I had radiation and 5 of the chemo done.  Suppose to have my last chemo done next week. But I am so sick. Don’t want to do it!!!  My doctor can’t tell me yes or no.  Has to be my decision. Just hard!!  So glad you are doing good!!! Just confused here.  I just got to believe 5 Is enough 

    Stage and Grade Matter

    Tinapal,

    Fanniemay was last online in January and remainder of the other posters in this old thread haven't been on in several years. But I think that most of the current members would say that the decision whether to continue with the final chemotherapy treatment depends upon (1) the type and stage of your cancer and (2) other health issues.

    I do know that at least a couple ladies had to stop chemotherapy because the side effects were too intense. Because I am Stage IIIB with an aggressive form of cancer, I persisted with the second phase of my chemotherapy, even though the side effects were far worse than I had had with Paclitaxel/Carboplatin during the first phase. I did have external radiation as a preventative measure after chemotherapy. For me, radiation was much easier than chemo,

    But if I had had earlier stage of cancer or a less aggressive form, my decision to continue with chemo or have radiation might have been different.

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    tinapal said:

    Fanniemat

    I am like you. I had radiation and 5 of the chemo done.  Suppose to have my last chemo done next week. But I am so sick. Don’t want to do it!!!  My doctor can’t tell me yes or no.  Has to be my decision. Just hard!!  So glad you are doing good!!! Just confused here.  I just got to believe 5 Is enough 

    I only made it through three

    I only made it through three chemos and I had Stage II Grade 3 UPSC. Knock on wood, I'll be three years NED next month. 

    Love, 

    Eldri