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Radiation

nancy9
Posts: 35
Joined: Feb 2013

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.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

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
Posts: 35
Joined: Feb 2013

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's picture
Ces59
Posts: 8
Joined: Feb 2013

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's picture
jazzy1
Posts: 1387
Joined: Mar 2010

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

Ces59's picture
Ces59
Posts: 8
Joined: Feb 2013
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
HellieC
Posts: 455
Joined: Nov 2010

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 

Ces59's picture
Ces59
Posts: 8
Joined: Feb 2013

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
Posts: 455
Joined: Nov 2010

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

 

Ces59's picture
Ces59
Posts: 8
Joined: Feb 2013

Just to let all the wonderful people on this site know that I got my results yesterday and the biopsies showed no cancers anywhere else. I don't have all the full details as it was a phone call but it seems all the scarring on my bowel is probably due to endometriosis. So my cancer remains a 1a removed by my hysterectomy. So I have been celebrating. They have said they will not need to give me radiotherapy . So I feel I have been given my life back and I feel very thankful. I hope I can be of some help to those of you who have more to face. I do believe the important thing is to try and remain positive. My friends have been amazing - including my online friends. They make such a difference. Thank you everyone who has sent me good thoughts.

Carol

nancy9
Posts: 35
Joined: Feb 2013

That is FANTABULOUS!!!  I would definitley celebrate with a drink or two.  Best wishes to you. Cool

Ces59's picture
Ces59
Posts: 8
Joined: Feb 2013

Just to let all the wonderful people on this site know that I got my results yesterday and the biopsies showed no cancers anywhere else. I don't have all the full details as it was a phone call but it seems all the scarring on my bowel is probably due to endometriosis. So my cancer remains a 1a removed by my hysterectomy. So I have been celebrating. They have said they will not need to give me radiotherapy . So I feel I have been given my life back and I feel very thankful. I hope I can be of some help to those of you who have more to face. I do believe the important thing is to try and remain positive. My friends have been amazing - including my online friends. They make such a difference. Thank you everyone who has sent me good thoughts.

Carol

HellieC
Posts: 455
Joined: Nov 2010

I am so pleased for you, Carol.  The waiting is terrible, but such good news at the end is wonderful.  The most important thing for you now is to move forward with your life.  Enjoy each and every day and "don't sweat the small stuff"! 

Kindest wishes
Helen

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

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
Posts: 35
Joined: Feb 2013

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
Posts: 35
Joined: Feb 2013

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.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

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

nancy9
Posts: 35
Joined: Feb 2013

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's picture
jazzy1
Posts: 1387
Joined: Mar 2010

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
Posts: 35
Joined: Feb 2013

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

Teamkelly's picture
Teamkelly
Posts: 54
Joined: Sep 2012

I have a question about why my sister in law who has finished 6 rounds of carbo taxol, has been told by her doctor and doctor at MSK that she is not a candidate for radiation?  I see that most of you have had radiation, is it because they think it has metastised too far that they both are telling her no radiation?

 

Nicki

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I as well diagnosed with same cancer (MMMT) 3c, as found in 1 pelvic lymph node.  Doc told me chemo will  kill good/bad cells and with this aggressive cancer want to get everything right out of the cage.  Then come back and hit hard the area (1 pelvic lymph node) where cancer was found.  Main reasoning for my radiation, but as well remember the cancer with us originates normally in uterus.

Not sure why not suggesting radiation for your SIL.  If you don't feel comfortable with the course this doc wishes to take, plse get a second opinion.  Most insurance will cover second opinions.  Remember this is aggressive and we have a better chance of getting it all at the beginning.  Surely don't want to have any recurrences as a bit more difficult to treat as this one moves around a lot.

Hang in there and don't give up....

Jan

Teamkelly's picture
Teamkelly
Posts: 54
Joined: Sep 2012

Thanks Jazzy, yes I know you had a very similar diagnosis as Kelly. You know we did get a second opinion at Sloan, he also said no radiation, I videotaped that apptmt so I will go back and re watch it again. What year did you have radiation? Thanks for everyone's support on here, you ladies are amazing.  

Nicki

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Radiation was summer of '09...sandwiched between total of 6 chemo (carbo/taxol). Sorry didn't remember you had second opinion.  I think you've gone to a very reputable hospital and if you feel docs is qualified, go with your gut feeling.  Does this doc have experience withour agressive MMMT?  That's important as not like the garden variety cancer.

MMMT as well is diagnosed in ovarian, have you tried that side of site under that cancer?  Might find help over there...just a thought~

Best,

Jan

 

 

 

 

Teamkelly's picture
Teamkelly
Posts: 54
Joined: Sep 2012

Yeah, the MSK doc sits on the international uterine carcinoma sarcoma board and he and his boss/partner wrote the current trial for infosamide/taxol which is in it's final stages, in fact this board is the one that has agreed they will all call it uterine carcinoma sarcoma instead of MMMT.

Kelly has her PET on the 26th of March and follow up on 28th, so we will wait and see. Thanks for everything.

Nicki

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Best to Kelly on her upcoming PET.

 

Keep us posted,

Jan

cleo
Posts: 123
Joined: Sep 2009

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.

nancy9
Posts: 35
Joined: Feb 2013

Great advice thank you!

susangr
Posts: 63
Joined: Oct 2010

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.

nancy9
Posts: 35
Joined: Feb 2013

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. 

Jennifer642's picture
Jennifer642
Posts: 5
Joined: Feb 2013

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!

nancy9
Posts: 35
Joined: Feb 2013

Everyone knows someone.  LOL  I so know that feeling.  I didn't lose that much wait with chemo like everyone who knew someone said I would.  LOL  I have begun to open up more with my Onocologist and have been honest (sometimes brutally) with him.  I crack a lot of jokes and he appreciates my honesty and willingness to ask questions that most patients are too embarrassed to ask.  So needless to say, I stopped listening to the "experts" and I am doing great.  I am going into my 2nd week of radiation and so far so good.  Nothing too major.  Good luck Jennifer!  Keep us updated on how your progress.

Nancy2012
Posts: 3
Joined: Oct 2012

This past August I was also diagnosed with stage 4 carcinosarcoma. Since then, I've had carbo/taxal, 6 doses, with a total hyst inbetween. Chemo side effects varied from dose to dose, but all of them gave me muscle & joint pain. Gel ice packs made it tolerable. I lost only 15 pounds in 6 months, but I also watched what I ate. Key to all of this is faith in my doctor. We had to have a meeting of the minds in the beginning, I'm a bit assertive & researched my diagnosis ahead of time. Being a retired RN in critial care, I had a pretty good grasp of the ramifications of this diagnosis. My Dr & I are on the same page reguarding treatment & future care, I trust him implicitly. Yesterday I started 3 doses of vaginal radiation. Not too bad & a breeze compared to chemo! Next will be a ct scan & every 3 month Dr visits. Right now, I'm tired. I too have 'chemo brain,' but I'm looking forward to growing hair, getting my energy back & being able to play with my horses. They have been a healthy diversion. My family has been totally supportive & a major factor in getting through all this! Keeping a good sense of humor is paramount. That and a positive outlook. No matter what happens, there's always something positive.

Keep up your wonderful outlook!!!

Nancy2012

nancy9
Posts: 35
Joined: Feb 2013

I cannot agree more that family and a great sense of humor plays a major role in getting healthy and staying healthy.  It helps me stay positive no matter what happens.  Best wishes to you. 

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