Radiation

nancy9
nancy9 Member Posts: 35

Hi!  I have been diagnosed with Stage 3 uterine cancer.  I had a full hysterectomy and just finished chemo.  I begin radiation on Valentine's Day.  Happy Valentines to me!  lol  I'm looking for any experiences of what really happens during radiation.  One doctor said it won't be that bad because I went thru chemo.  Another doctor laughed and basically said that  I will be very sick.  I understand that everyone is different, but I am just wondering what I should anticipate.  Any advice is welcomed.

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Comments

  • jazzy1
    jazzy1 Member Posts: 1,379
    Radiation

    Two different types -- internal and external..what are you having?  I had 33 internal as 1 pelvic lymph node had cancer, so they really zapped me hard.  

    I had radiation sandwiched between my total chemo sessions, therefore, had it after #3 chemo.  Will tell you it was more difficult vs. chemo as it caused havoc on my bowels and intestines as to where I learned to be close to a bathroom as everything was a "rush".  My food intake became very bland with no raw veggies, which I love, plus lots of fluids as I had the runs an awful lot.

    Sorry to be the bearer of bad news, but this was my experience.  I do know not everyone has it this bad, so look for some good news postings soon.

    How did you do thru the chemo and what type of protocol drugs???  

    I can relate to unfun events falling on a "special day".  I had a D&C on my birthday and found the 2 small fibroid tumors and the rest is history.

    Good luck and know  we've all been thru it, just some of us have different experiences.

    Hugs,

    Jan

     

     

  • nancy9
    nancy9 Member Posts: 35
    jazzy1 said:

    Radiation

    Two different types -- internal and external..what are you having?  I had 33 internal as 1 pelvic lymph node had cancer, so they really zapped me hard.  

    I had radiation sandwiched between my total chemo sessions, therefore, had it after #3 chemo.  Will tell you it was more difficult vs. chemo as it caused havoc on my bowels and intestines as to where I learned to be close to a bathroom as everything was a "rush".  My food intake became very bland with no raw veggies, which I love, plus lots of fluids as I had the runs an awful lot.

    Sorry to be the bearer of bad news, but this was my experience.  I do know not everyone has it this bad, so look for some good news postings soon.

    How did you do thru the chemo and what type of protocol drugs???  

    I can relate to unfun events falling on a "special day".  I had a D&C on my birthday and found the 2 small fibroid tumors and the rest is history.

    Good luck and know  we've all been thru it, just some of us have different experiences.

    Hugs,

    Jan

     

     

    Thanks Jan.  I appreciate

    Thanks Jan.  I appreciate your honesty.  I can relate to yucky birthdays.  2 days before my 40th birthday I was told that I had cancer and on my 40th I was told I needed a hysterectomy.  40 stinks so far.  I am looking for to 41.  lol

    Chemo declared war on my bowels from the get go.  I also love my fresh veggies and fruit.  I refused to give them up since any type of food didn't agree with my tummy; I figured it was better to eat healthy. 

    I am getting microwaved 5 days a week for 5 weeks.  It is external because it was microscopic and the drs were surprised by the stage.  They also found 1 node to have cancer out of the 36 they took.  I asked about radiation during chemo but the doctors didn't want to go down that road.  They said it would be too much. 

     

    Were you sick everyday, all day?  Did you get sick immediately after radiation or later in the day?  If you don't mind me asking.

  • Ces59
    Ces59 Member Posts: 8
    nancy9 said:

    Thanks Jan.  I appreciate

    Thanks Jan.  I appreciate your honesty.  I can relate to yucky birthdays.  2 days before my 40th birthday I was told that I had cancer and on my 40th I was told I needed a hysterectomy.  40 stinks so far.  I am looking for to 41.  lol

    Chemo declared war on my bowels from the get go.  I also love my fresh veggies and fruit.  I refused to give them up since any type of food didn't agree with my tummy; I figured it was better to eat healthy. 

    I am getting microwaved 5 days a week for 5 weeks.  It is external because it was microscopic and the drs were surprised by the stage.  They also found 1 node to have cancer out of the 36 they took.  I asked about radiation during chemo but the doctors didn't want to go down that road.  They said it would be too much. 

     

    Were you sick everyday, all day?  Did you get sick immediately after radiation or later in the day?  If you don't mind me asking.

    Chemo

    I am just waiting for histology following my hysterectomy. I expect to be told I need radiotherapy and chemo as they found things were not the 1 a they expected when they did the surgery. My question is how did the chemo affect you? We're you very sick and also did you lose your hair? 

  • jazzy1
    jazzy1 Member Posts: 1,379
    nancy9 said:

    Thanks Jan.  I appreciate

    Thanks Jan.  I appreciate your honesty.  I can relate to yucky birthdays.  2 days before my 40th birthday I was told that I had cancer and on my 40th I was told I needed a hysterectomy.  40 stinks so far.  I am looking for to 41.  lol

    Chemo declared war on my bowels from the get go.  I also love my fresh veggies and fruit.  I refused to give them up since any type of food didn't agree with my tummy; I figured it was better to eat healthy. 

    I am getting microwaved 5 days a week for 5 weeks.  It is external because it was microscopic and the drs were surprised by the stage.  They also found 1 node to have cancer out of the 36 they took.  I asked about radiation during chemo but the doctors didn't want to go down that road.  They said it would be too much. 

     

    Were you sick everyday, all day?  Did you get sick immediately after radiation or later in the day?  If you don't mind me asking.

    Nancy

    I can't say the chemo was quite as bad, especially with the bowels.  I was just having an upset tummie which made me not want to eat much.  But...learned to force somewthing down, especially fluids.  

    I was still working out even during radiation, but must say the walking and runs were somewhat challenging as had to plan my course close to home, so I could step into the bathroom. Gives you an idea how much it affect me, too. The bowel issues started almost to the day of 14. From then on each day I had some type of fast bowels.  I just learned to eat much less roughage-type foods.  I know you mentioned continuing to eat certain foods as know they're healthy, but trust me, you won't be eating much roughage...you will pay in the end!!! lol~

    They did give me some meds and/or over the counter type aid for the issues, so surely you're have this talk with your doc.  Mine gave me a sheet of what to eat and not eat, etc, and I learned to follow it.

    I hope and pray you have a very easy path during the radiation.....but know it's much better months after the treatments are completed.  

    Jan

  • jazzy1
    jazzy1 Member Posts: 1,379
    Ces59 said:

    Chemo

    I am just waiting for histology following my hysterectomy. I expect to be told I need radiotherapy and chemo as they found things were not the 1 a they expected when they did the surgery. My question is how did the chemo affect you? We're you very sick and also did you lose your hair? 

    Ces59

    Let's hope and pray your doc tells you all good news and don't have to worry about any treatments.  Chemo affects us all in different ways as well as loosing the hair.  All depend on the drugs administered, which is what you'll need to find out...drugs used?

    Good luck and keep us posted on what you find!

    Jan

  • nancy9
    nancy9 Member Posts: 35
    Ces59 said:

    Chemo

    I am just waiting for histology following my hysterectomy. I expect to be told I need radiotherapy and chemo as they found things were not the 1 a they expected when they did the surgery. My question is how did the chemo affect you? We're you very sick and also did you lose your hair? 

    Hi!  Chemo is an interesting

    Hi!  Chemo is an interesting journey.  Please keep in mind that chemo is different for everyone.  I wasn't as sick as I thought I would be.  I didn't really vomit (I wanted to, but couldn't) but I did have diarhea.  If it wasn't diarhea, then I was constipated.  I was very nauseated and dizzy.  I do have neuropathy as a result of chemo.  It should go away.  It gets a little better every day.  Chemo brain sucks and I was always tired.  Invest in lotion.  My skin is really dry now, but lotion is my best friend.  The Neulasta shots make your bones ache/hurt for a few days.  Most of the side effects didn't last too long and not as bad as I imagined. 

    I did start losing my hair by week 3 (the doctor informed me and I hate when he is right.  Hahaha).  I took control and shaved my head.  I haven't shaved my legs or armpits in months (wish it was summer LOL).  I still have most of my eyelashes and eyebrows.  But let me tell you how freeing it is not to shave and moss around with hair.  I can be showered, dressed, and ready to go in 20 minutes; 30 if I put  on make up. 

    Take advantage of the Look Good Feel Better program.  It was great!  There are great wigs, hats, and scarves.  The American Cancer Society offer wonderful free wigs.  Most importantly, be open and honest with your doctor about everything.  They can help you.  My oncologist is amazed when he asks how I am doing and I tell him FANTABULOUS with a big smile (and I mean it).  My positive attitude helped me a lot. 

    Don't be discouraged if you need chemo and/or radiation.  And remember that it effects everyone differently.  Side effects can be managed if you tell your doctor.  

    Good luck on your journey.

  • nancy9
    nancy9 Member Posts: 35
    jazzy1 said:

    Nancy

    I can't say the chemo was quite as bad, especially with the bowels.  I was just having an upset tummie which made me not want to eat much.  But...learned to force somewthing down, especially fluids.  

    I was still working out even during radiation, but must say the walking and runs were somewhat challenging as had to plan my course close to home, so I could step into the bathroom. Gives you an idea how much it affect me, too. The bowel issues started almost to the day of 14. From then on each day I had some type of fast bowels.  I just learned to eat much less roughage-type foods.  I know you mentioned continuing to eat certain foods as know they're healthy, but trust me, you won't be eating much roughage...you will pay in the end!!! lol~

    They did give me some meds and/or over the counter type aid for the issues, so surely you're have this talk with your doc.  Mine gave me a sheet of what to eat and not eat, etc, and I learned to follow it.

    I hope and pray you have a very easy path during the radiation.....but know it's much better months after the treatments are completed.  

    Jan

    Thanks Jan.  I'm going to

    Thanks Jan.  I'm going to take your advice and watch my roughage intake.  It sounds as if the potty issues lasted long after radiation stopped. 

  • jazzy1
    jazzy1 Member Posts: 1,379
    nancy9 said:

    Thanks Jan.  I'm going to

    Thanks Jan.  I'm going to take your advice and watch my roughage intake.  It sounds as if the potty issues lasted long after radiation stopped. 

    Nancy

    Yes they do last a while even after the treatments.  Today some 3.5 years since completion of treatments, have some very minor issues.  Radiation simply dries many ligaments, bones and tendons up, so we do have issues.  

    Try to think of the positives --- killing the cancer!!!  The ONLY way I got thru the treatments.  Listen to your body as it'll give you guidance on what to/not eat.  I was an avid person to call my chemo/radiation nurses to ask about issues I'd have, and they were very helpful with suggestions.  Heck they've seen it a million times so who better to ask then the ones who see this all the time.

    Take care and you'll be fine...

    Jan

     

  • nancy9
    nancy9 Member Posts: 35
    jazzy1 said:

    Nancy

    Yes they do last a while even after the treatments.  Today some 3.5 years since completion of treatments, have some very minor issues.  Radiation simply dries many ligaments, bones and tendons up, so we do have issues.  

    Try to think of the positives --- killing the cancer!!!  The ONLY way I got thru the treatments.  Listen to your body as it'll give you guidance on what to/not eat.  I was an avid person to call my chemo/radiation nurses to ask about issues I'd have, and they were very helpful with suggestions.  Heck they've seen it a million times so who better to ask then the ones who see this all the time.

    Take care and you'll be fine...

    Jan

     

    Thanks for the honesty.  I am

    Thanks for the honesty.  I am sure I will have many more questions as time marches on.  :-)

  • cleo
    cleo Member Posts: 144
    Radiation

    Hi Nancy.  I had 32 zaps of exterior pelvic radiation for stage 3/4 MMMT    Followed the advice given beforehand......use non scented soap and water based cream.  I took the cream with me and rubbed it on mmediately after treatment.  Don't bathe in very hot water.    I did feel nauseous and the bowels went into overtime but was immediately given medication for both to take when necessary.    I went off all food and lost quite a bit of weight as soups were more palatable.   However...apart from afternoon tiredness in the final couple of weeks I had no major problems.  Good luck.

  • Ces59
    Ces59 Member Posts: 8
    jazzy1 said:

    Ces59

    Let's hope and pray your doc tells you all good news and don't have to worry about any treatments.  Chemo affects us all in different ways as well as loosing the hair.  All depend on the drugs administered, which is what you'll need to find out...drugs used?

    Good luck and keep us posted on what you find!

    Jan

    I waited on Wednesday for my results - having steeled myself for the worst. At about 3 pm I got a call from the oncologist nurse to say the results were not ready so they had not looked at my case. I now have to wait a further week. She was very pleasant and said it made little difference as follow up treatment could not begin until 4-6 weeks after surgery. I felt so shocked and upset. I was told there was a desperate shortage of histologists - no-one seems to want to do that job in the UK and meanwhile there is greater demand. So I will come back next week. Thanks for the support on this site.

     

    Carol
  • susangr
    susangr Member Posts: 64
    More experiences related to radiation....
    Interesting that so many of us were diagnosed and/or began treatments around special days. As if we need special days to remember this momentous event. I had my diagnostic CTs on my birthday with surgery one week later. I had 25 external radiation treatments over 5 weeks with chemo weekly and then at the end 3 brachytherapy internal radiation treatments at the end. It's doable. The effects are cumulative. Begin to become evident about 3 weeks in and peaks 3 weeks after treatment stops. Be very careful not to get dehydrated from diarrhea and/or vomiting. My radiologist wanted me to keep my bladder full prior to the treatments. This helps to push most of the bowel out of the radiation field. It's the radiation on the bowel that causes the diarrhea. Drink at least 96 ounces of fluid a day and stay on top of the diarrhea treating it with the meds recommended. If you get dehydrated you can get dizzy from low BP and may have to be admitted for hydration. As for what you eat..follow the recommendations. I found bland was best, rice, puddings, jello, etc. if you are getting radiation at the same time as chemo, as one is suppose to make the other work better additional problems can be amplified. You can also believe it or not get constipated too! Don't hesitate to call your healthcare team to solve issues as you go along. Find the bathrooms. Keep a bag with you with extra undies or disposable briefs. Just think of these treatments as killing any cells that got away!

    We are here for you.
  • HellieC
    HellieC Member Posts: 524 Member
    Ces59 said:

    I waited on Wednesday for my results - having steeled myself for the worst. At about 3 pm I got a call from the oncologist nurse to say the results were not ready so they had not looked at my case. I now have to wait a further week. She was very pleasant and said it made little difference as follow up treatment could not begin until 4-6 weeks after surgery. I felt so shocked and upset. I was told there was a desperate shortage of histologists - no-one seems to want to do that job in the UK and meanwhile there is greater demand. So I will come back next week. Thanks for the support on this site.

     

    Carol
    So sorry you're still waiting

    Carol.  I'm so sorry the results weren't ready for your MDT meeting this week.  I know how that feels and waiting another week is torture.  I am in the UK too and I had 6 rounds of chemo in 2008 (carboplatin and taxol), so when you're ready, post again and I will give you an idea of how it was for me.  But it is very do-able - so don't let your imagination run wild!

    Did you know that there is a Facebook support page for womb cancer in the UK?  Here are the links.  The first link is for the Womb Cancer Support UK Facebook page and the second is for their closed (secret) group, where we can all chat without it appearing in any news feed.  Lots of lovely ladies at various stages of the treatment process and beyond and lots of information and advice. 

    http://www.facebook.com/?sk=nf#!/WombCancerSupportUK?fref=ts

    http://www.facebook.com/?sk=nf#!/groups/108865462534230/

    Helen 

  • jazzy1
    jazzy1 Member Posts: 1,379
    Ces59 said:

    I waited on Wednesday for my results - having steeled myself for the worst. At about 3 pm I got a call from the oncologist nurse to say the results were not ready so they had not looked at my case. I now have to wait a further week. She was very pleasant and said it made little difference as follow up treatment could not begin until 4-6 weeks after surgery. I felt so shocked and upset. I was told there was a desperate shortage of histologists - no-one seems to want to do that job in the UK and meanwhile there is greater demand. So I will come back next week. Thanks for the support on this site.

     

    Carol
    Carol

    I as well am sorry you're still on the waiting pad...not what any of us want is it???  What concerns me you were diagnosed or should I say had surgery prior to Christmas and still unknown for results, then to start treatments????  If anything is aggressive (as mine was with MMMT), my docs didn't want to wait very long after pathology came back, then start treatments immediately.  

    UK health care is different, but heck what do any ofus  know here...our new Obamacare might be similar.  They could pick and choose whom to treat, thus be in waiting line as you're doing now??

    A friend was diagnosd with ovarian and breast cancers some 20+ years ago.  Still does have infrequent follow ups with her oncolog.  She started with some spotting and doc recommeneded a CT scan.  Sent to her insurance, Anthem, for approval and they DECLINED.  My friend proceeded to tell me this is the start of how our new health care will be working....they'll not approve everything as doing now, as will pick and choose what THEY will pay for.  If she truly wanted the CT, she'd be forced to pay the full amount,which she'll not do.  Luckily the spotting did stop on it's own and doc ran some other test which showed nothing.  

    Keep us posted Carol, and hang in there during the long wait!!

    Jan

     

  • nancy9
    nancy9 Member Posts: 35
    Ces59 said:

    I waited on Wednesday for my results - having steeled myself for the worst. At about 3 pm I got a call from the oncologist nurse to say the results were not ready so they had not looked at my case. I now have to wait a further week. She was very pleasant and said it made little difference as follow up treatment could not begin until 4-6 weeks after surgery. I felt so shocked and upset. I was told there was a desperate shortage of histologists - no-one seems to want to do that job in the UK and meanwhile there is greater demand. So I will come back next week. Thanks for the support on this site.

     

    Carol
    Ces59

    I am so sorry that you have to continue to wait.  I am from Western New York and we are beginning to experience a shortage of doctors my healthcare care changed this year all due to Obamacare.  I amstarting to feel your pain and anguish.  Just know that we are all here to support each other. 

  • nancy9
    nancy9 Member Posts: 35
    cleo said:

    Radiation

    Hi Nancy.  I had 32 zaps of exterior pelvic radiation for stage 3/4 MMMT    Followed the advice given beforehand......use non scented soap and water based cream.  I took the cream with me and rubbed it on mmediately after treatment.  Don't bathe in very hot water.    I did feel nauseous and the bowels went into overtime but was immediately given medication for both to take when necessary.    I went off all food and lost quite a bit of weight as soups were more palatable.   However...apart from afternoon tiredness in the final couple of weeks I had no major problems.  Good luck.

    cleo

    Great advice thank you!

  • nancy9
    nancy9 Member Posts: 35
    susangr said:

    More experiences related to radiation....
    Interesting that so many of us were diagnosed and/or began treatments around special days. As if we need special days to remember this momentous event. I had my diagnostic CTs on my birthday with surgery one week later. I had 25 external radiation treatments over 5 weeks with chemo weekly and then at the end 3 brachytherapy internal radiation treatments at the end. It's doable. The effects are cumulative. Begin to become evident about 3 weeks in and peaks 3 weeks after treatment stops. Be very careful not to get dehydrated from diarrhea and/or vomiting. My radiologist wanted me to keep my bladder full prior to the treatments. This helps to push most of the bowel out of the radiation field. It's the radiation on the bowel that causes the diarrhea. Drink at least 96 ounces of fluid a day and stay on top of the diarrhea treating it with the meds recommended. If you get dehydrated you can get dizzy from low BP and may have to be admitted for hydration. As for what you eat..follow the recommendations. I found bland was best, rice, puddings, jello, etc. if you are getting radiation at the same time as chemo, as one is suppose to make the other work better additional problems can be amplified. You can also believe it or not get constipated too! Don't hesitate to call your healthcare team to solve issues as you go along. Find the bathrooms. Keep a bag with you with extra undies or disposable briefs. Just think of these treatments as killing any cells that got away!

    We are here for you.

    susangr

    I never thought to keep my bladder full.  I am going to try that.  I asked if I could do radiation and chemo together (kill 2 birds with 1 stone and get back to work quickly) and the doctors told me no.  It would be too much at once and they would need to ease up on one of the treatments.  I understood but was disappointed.  Thanks for the advice, especially about the extra undies. 

  • Ces59
    Ces59 Member Posts: 8
    HellieC said:

    So sorry you're still waiting

    Carol.  I'm so sorry the results weren't ready for your MDT meeting this week.  I know how that feels and waiting another week is torture.  I am in the UK too and I had 6 rounds of chemo in 2008 (carboplatin and taxol), so when you're ready, post again and I will give you an idea of how it was for me.  But it is very do-able - so don't let your imagination run wild!

    Did you know that there is a Facebook support page for womb cancer in the UK?  Here are the links.  The first link is for the Womb Cancer Support UK Facebook page and the second is for their closed (secret) group, where we can all chat without it appearing in any news feed.  Lots of lovely ladies at various stages of the treatment process and beyond and lots of information and advice. 

    http://www.facebook.com/?sk=nf#!/WombCancerSupportUK?fref=ts

    http://www.facebook.com/?sk=nf#!/groups/108865462534230/

    Helen 

    Thanks

    Thanks Jan and Helliec. Yes, the wait has been bad but I feel now as if I am on holiday! My time line is perhaps not as bad as it seems. I went to the GP first early December, was diagnosed just before Christmas, then had an MRI, and had to wait for results. That suggested I was 1a, but when I had surgery it was not so straightforward and it is that  I just don't know about. I had the surgery 1st Feb, they did not take any lymph nodes, but took out the omentum and said my bladder looked inflamed. So whether they found any more cells I won't know till Wednesday. The UK system has it strengths and weaknesses but you are right you have little say who is going to treat you and how, but private health is very expensive here and tends to have poor after surgery support - or at least that was my experience when I had neck surgery done privately 3 years. The only real benefit to go private is you choose who, when and how and have a private room. You don't need to wait. Given the speed with which they usually deal with cancer it is best to stay with NHS. Going private without cover for cancer is just not an option. I just feel let down this time but I also feel grateful for the extra time not knowing. Sounds odd perhaps but I now understand why some people don't go to the doctor I.e. better not to know etc. Thanks also for the Facebook links - I will check them. So good to hear your stories are so positive. If all ends up well for me I promise to do what you have done - be here for others.

  • HellieC
    HellieC Member Posts: 524 Member
    Ces59 said:

    Thanks

    Thanks Jan and Helliec. Yes, the wait has been bad but I feel now as if I am on holiday! My time line is perhaps not as bad as it seems. I went to the GP first early December, was diagnosed just before Christmas, then had an MRI, and had to wait for results. That suggested I was 1a, but when I had surgery it was not so straightforward and it is that  I just don't know about. I had the surgery 1st Feb, they did not take any lymph nodes, but took out the omentum and said my bladder looked inflamed. So whether they found any more cells I won't know till Wednesday. The UK system has it strengths and weaknesses but you are right you have little say who is going to treat you and how, but private health is very expensive here and tends to have poor after surgery support - or at least that was my experience when I had neck surgery done privately 3 years. The only real benefit to go private is you choose who, when and how and have a private room. You don't need to wait. Given the speed with which they usually deal with cancer it is best to stay with NHS. Going private without cover for cancer is just not an option. I just feel let down this time but I also feel grateful for the extra time not knowing. Sounds odd perhaps but I now understand why some people don't go to the doctor I.e. better not to know etc. Thanks also for the Facebook links - I will check them. So good to hear your stories are so positive. If all ends up well for me I promise to do what you have done - be here for others.

    Keeping everything crossed for you

    Only a couple more days and you should have the full picture.  You are right about the NHS, it does have strengths and weaknesses.  I have found that their cancer treatment is first class, but that their admin and support (timing for scans, waiting for results, communication. etc etc) is often wide of the mark. 

    I did manage to get the surgeon I wanted - I knew the name of the chap who was considered best in the area and so I paid for an initial private consultation and scan and then when cancer was suspected, he happily switched me to his NHS list.  Some would say that using your own money like this gives you an unfair advantage, but apparently it's done all the time.  My view is that I have saved hard for a rainy day and I choose to spend it on health rather than a  holiday or a car - it's just a matter of personal choice. But I thought I'd mention it in case it's a route you hadn't thought of and that could be useful to you in the future.

    Hope the news on Wednesday is good

    Helen x

     

  • Jennifer642
    Jennifer642 Member Posts: 5
    Radiation next month

    I too have just finished my final round of chemo and am headed for 5 weeks pf radiation March 7th, with 2 brachyl to follow. I had gotten alot of misinformation from people who knew people, you know.  One women told me to put on as much weight as I could before hand because her mother had lost 80 lbs. during treatment.  Needless to say, I can npt afford tp lose 80 lbs.  My radiation Oncologist told me to stop listening to people who don't know, and to jsut call him if I have any quesitons.  He was helpful, but has never been through radiation, so I as thankful for the input of those of you who have.  Fingers crossed, it will go well, and I can get on with living and not having to endure weekly/daily treatments.  Goof Luck Nancy!