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cisplatin and radiation

Feelingalone74
Posts: 236
Joined: Jun 2019

Hi Ladies, next week I will begin my 25 radiation treatments with concurrent weeks 1 and 4 Cisplatin. I'm feeling very anxious about the cisplatin side effects. Does the anitnausea med help minimize the nausea and vomiting. I did not feel nauseous at all with the Carbo/Taxol treatments I received. This scares me to think I could be living by the toilet from the Cisplatin. They said I will need to take the anti nausea med around the clock. Hoping this works and Im not left sick. Im reading hearing loss too. Is that likely? I already drive my son and husband nuts saying what ...ha ha.

Originally my gyno oncologist treatment plan was 1x weekly for each of the 5 weeks of radiation.At Center closer to my home where I receive treatment says there was a new clinical trial that the showed no different results for most that received Cisplatin Week 1 and Week 4 of radiation. they both say the  decision is mine. I know nothing about this so how can I possibly make the decision?!!? The radiolgist said if he was the tie breaker he'dgo with just the 2 Cisplatin treatments.

Also, my gyno oncologist said there is no need forme to have brachy therapy but the radioligist is suggesting at least 2 or 3 brachy treatments. says its standard. Ugh , again so who do I go with. The gyno oncologist has been doing this for many many years. radioligist is much younger less experienced perhaps due to his age but may be more up to date on his education. I dont know . alls i do know is that making the patient who knows nothing about any of this doesnt deem like the answer.

It's hard for me to trust any docs right now because I so trusted the midwife I saw for 15-20 years . When I told her I was spotting between periods, which was abnormal for me she said i was likely premenopausal and having hormone changes stating some get the periods more and othrs get it less some get it more and i was unfortunately the one who was going to get it more. I trusted her completely and now after being diagnosed with C , im learnng she shoulud have immeditatly sent me for an ultrasound. This perhaps could have been caughten earlier and i may not be in the boat I am now but it sounded logial and she had done my paps for so many years that I trusted she new what she was talking about.

I wish currently the docs werent putting in my hands .

also very worried about the cisplatin making me sick!

any thoughts or suggestions are so appreciated!

Donna Faye's picture
Donna Faye
Posts: 253
Joined: Jan 2017

When I had a recurrence, I had to have the pelvic rads and more brachy. I trusted my rad doc and he assured me the cisplatin worked to enhance the radiation. I had absolutely no problem with the cisplatin, just the normal problems that go with pelvic rads. Now 18 mos. out and doing well. Don't fear the cisplatin.

Feelingalone74
Posts: 236
Joined: Jun 2019

Donna Faye, thanks for your response! Im so gald that 18 months out your doing well!!!!

My rad doc and oncologist did say too that the radiation and cisplatin worked together . I have heard that cisplatin can make you very nausious so Im getting nervous about treatment next week. They reassured me I would get antinausea premed before the cisplatin and that I would have to take antinausea round the clock . and that on day 3 i might start feeling sick ....though reminding me that everyones body tolerates treatments different. I didnt get sick with the carbo/taxol so I was hoping for the same but getting nervous. So Im so relieved that you said you didnt have any problems with the cisplatin!!!! I will hope for the same.

How many times did you get the cisplatin during radiation. They changed mine from 5 times to 2 (given on week 1 and week 4) based on a study. My gyno oncologist suggested every week originally but he said was fine with what  the oncologist Im  seeing closer to me is suggesting.

I'm hoping I dont make a mistake only getting it 2x's

Keep feeling well Donna Faye!!!! :-)

Donna Faye's picture
Donna Faye
Posts: 253
Joined: Jan 2017

I did not take any medicine for nausea but did have to live on Immodium for weeks and still have to take every now and then.  I had 5 total cisplatin, once a week, during the pelvic rads. I did not take a probiotic but wish I had. It might have helped. My docs were very on top of things for me and often one would call and we would have a conference call so I would get both their ideas at the same time. I think you will be OK. Thinking of you.

Feelingalone74
Posts: 236
Joined: Jun 2019

Did you take a probiotic when receiving pelvic rad? I asked he said it wasnnt nessecary. Also, I thought someone originally told me I would have to avoid fruit and veggies that are antioxidants because they would work against the radiation that oxidizies you but he said that was just a myth. Thoughts on that?

Donna Faye's picture
Donna Faye
Posts: 253
Joined: Jan 2017

I had to stay on a BRAT diet during the time due to my bowel upset. I still have to be careful about what I eat as tummy can get upset in a hurry.

MAbound
Posts: 871
Joined: Jun 2016

It's antioxidant supplements that you need to be careful about taking during chemo and radiation rather than food sources for antioxidants. Supplements provide much higher concentrations and doses than you get from eating food and can be counterproductive to treatment in medicinal strength doses. 

https://www.oncolink.org/cancer-treatment/radiation/support/supplement-use-during-radiation-therapy

Feelingalone74
Posts: 236
Joined: Jun 2019

Thanks so much MaBound for that clarification! Only thing I take is Iron Tab and B Vomplex so presumably they should be good.

MAbound
Posts: 871
Joined: Jun 2016

Why are you taking an iron tab? How long have you been taking it? I ask because with going into surgical menopause, if you were anemic due to your periods, that should no longer be a concern for you and you really shouldn't take an iron supplement unless there is a really good reason and you are advised to take it by your doctor.

The best way our bodies get rid of excess iron is through blood loss. After menopause you are more susceptible to iron toxicity if you take an iron supplement. Iron toxicity can actually cause cancer, particularly colon cancer, so it is much safer to get what you need from food. A doctor might prescribe it for a set period of time if your levels test low, but this is a supplement you don't want to keep taking indefinitely without getting your levels checked regularly.

Feelingalone74
Posts: 236
Joined: Jun 2019

Oh MAbound you are so knowledgeable. I was told to take it when I was bleeding prior to the hysterectomy. I asked them to check my iron level  a few weeks ago when they were doing routine blood work. She told me the level was good and that I wasnt at the risk of anemia. She beversiad to stop taking it so I assumed I should continue as I was concerned about not getting enough Iron through food.

Jeez, I have learned way  more on here than any doc off. I have an appt tomorrow that Im hoping to not to have to cancel , and I will ask then and tell them my concern.

Feelingalone74
Posts: 236
Joined: Jun 2019

Just researched it you are absolutley right! Why they havent told me to stop taking it is beyond me!

MAbound
Posts: 871
Joined: Jun 2016

It's important and vital to one's own self-preservation to never be a passive patient. There is no such thing as a doctor who knows everything about everything and has the time to educate us about it all, so the onus is on us to fill in the gaps for what pertains to us. It seems like the more you learn, the more there is to learn. It never stops, but it's worth the time and effort you put into it. 

I just can't understand ingesting anything without thoroughly understanding the pros and cons of doing so, so discussions about supplements tend to get me up on my soap box. So often the benefits get tauted without discussion about the potential negatives and times when they would be contra-indicated. I know I can be irritating when I go "but....", but ....Innocent.

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Uhm.... I'll take your "but...." anytime! The fact that you care enough to share speaks volumes. If someone doesn't like a post, they can just scroll on by it.  

Thanks for your candor and sharing.

Love and Hugs,

Cindi

MAbound
Posts: 871
Joined: Jun 2016

Wink. LOL! Don't give me too much encouragement! I like the soap box too much!

Feelingalone74
Posts: 236
Joined: Jun 2019

MAbound , I always appreciate your knowledge and your input! I hve learned so much from you ladies 1st hand experience and its helping me get through this journey tremendously!

I am learning that they cant or dont have the time to answer all my questions so coming to this board is so helpful to me. 

Learning I need to be my own advocate and I know its my right to question anything Im not comfortable with in regards to decisions my helath team are making in regards to my treatment. Often I know they get annoyed with all my questions but I also know if I dont ask and question how will I know .

 

Armywife's picture
Armywife
Posts: 316
Joined: Feb 2018

You might feel like they are annoyed with you, and I felt the same way.  BUT, when I had to say goodbye to my surgeon/gynonc due to her move, she said to me that she was so happy that I was my own advocate and took detailed charge of my own care - she said so many patients blindly obey or turn over their care to their husbands.  I think it would be so much easier to do that in times of stress, but my doc appreciated me keeping her on her toes!  (now I have to break in a new one!)

 

Feelingalone74
Posts: 236
Joined: Jun 2019

Thanks for sharing that Armywife!  I hope that my docs and nurses as well as yours did, appreciate the fact I am trying to be my own advocate.I feel sometimes when I call to get reassurance as to what Im feeling is noraml or question their thought process its not because im being disrepectful its because I want to better understand what their telling me or I need more feedback. I bet you will have no trouble breaking in a new one. LOL

My gnoonc/surgeon is an older man and I know he especially gets annoyed by all my questions and answers I want. that is frustating as this is all scary for me and all the uncertainities are so worrisiome. I just wishhe was a lil more sypathetic of patients like me. Thankfully his nurse and the nurse at the Center Im being treated at are more patient withme and answer my questions to the best they can. Its just hard when you want to hear youll be cured after this and they cant look you in the eye and tell you yes ...i get that they have no idea whaatmy body is going to do . Hopeful though because they say cat scan was negative and this is preventative treatment incase a bad cell was to small to be detected. 

I hope you are well as I do for all the ladies on here who take the time out of their days to give input on my concerns!  :-)

MAbound
Posts: 871
Joined: Jun 2016

I can't remember your pathology results and your "My Space" is blank. (Hint, hint) My radiation oncologist and gyn oncologist didn't agree with each other, either. My 69 year old gyn oncologist absolutely did not want me to have brachy during frontline. He only wanted me to have 5 weeks of pelvic radiation. I ended up having the pelvic radiation plus what was called a vaginal boost which is basically brachy delivered externally without using the radioactive tampon.

I really felt caught in the middle between them and didn't appreciate it because it took a lot of help and information from this group to get myself to agree to even have the pelvic radiation. Doctors are just all over the place in philosophies and practices and it just sucks that they look at us to make these life and death decisions.

Here's what you really need to understand and consider when you make your decision:

  • Your pathology (hence why I went looking for yours). My cancer originated near the neck of the uterus (the thinnest part) and grew both up into the fundus and down towards the cervix. It penetrated the myometrium 70%. I had lymphovascular invasion with a positive pelvic lymph node on each side. Those particulars put me at having a good chance for recurrence around the vaginal cuff which is where this cancer tends to recur first. (Lungs are second and that's why para-aortic lymph nodes usually get tested, too.) Radiation, particularly brachy or a vaginal boost has been shown in studies to up your odds of remaining NED when you have that kind of pathology vs. not having that as additional treatment. 
  • In my circumstances, it also helped to know what kind of equipment was going to be used to deliver the radiation. There are some really sophisticated options out there that can do a lot to avoid surrounding organs such as the bladder, bowel, and hips to minimize adverse side effects. I had mine delivered using 3D-CRT and haven't suffered from some of the ill effects that others have had with internal radiation (brachy). 
  • Your gyn oncologist is not necessarily wrong in advising against the brachy. Brachy is a local treatment (effective against only what it's aimed at) and can only be used once to an area. He's not the only Dr. out there who prefers to reserve radiation for if and when it might be needed. Go ahead and give weight to his recommendation, but do it in light of what your pathology particulars are.

I get what you mean about the trust issue. My cancer got to the stage and grade it did due to my doctor being let's-wait-and-see about my late menopause (I was 59 at diagnosis). It is a thing, so I went along with it, but that was a missed opportunity for the possibility of the C word being considered. My periods were regular and my pap smears were negative, so I didn't have it on my radar to question about it. I didn't know about any of the risk factors for this cancer because the focus seems to always be on breast or cervical cancer. It turns out that I had a number of the risk factors and it really angered me that my doctor didn't know better than me to add that all up and consider sending me a specialist sooner. It's all coulda, woulda, shoulda now, but it still upsets me that my cancer wasn't caught earlier and that this similarly happens to others. It's probably going to take the availability of a screening test to change that. Until then, it just seems like there isn't the interest in educating anyone to have it on their radar to try to catch it quick or even do what's possible to prevent it. I could just rant about this forever!

Feelingalone74
Posts: 236
Joined: Jun 2019

MAbound, it certainly is difficult when those on health care team aren't in agreeance! 

And yes ive been saying forever that i need to fill out my space page...hint taken :-)

In short, my gyno oncoligist says that brachy therapy isnt necesscary because he thinks im getting coverage of the vaginal cuff with exteranl radiation. he says its usually recommended if the cervix or top of the uterus was involved and mine was not.  

my diagnosis is at age 44 Endometrial Cancer Stage lll FIGO Grade 2 ( went from stage ll to stage lll because it had spread to my ovaries).  I had a full robotic hysterectomy...went well without any complications,thankfully)! then Cat Scan of pelvic and abdomen...came back negative, negative testing for lynch syndrome. they couldnt understand why someone as young as me with slimmer body type and not have been through menopause and because of that said I didnt fit the bill for endometrial cancer. it was concluded that I had the genetics for endometrial cancer. All of this was so scary and shocking to me because just before the spotting bleeding between periods i had just gone a few weeks prior came back normal and when i called about spottingbleeding she said I was most likely premenopausal and that some get their periods less some get it more and unfortunately I was going to be the one who gets it more. I saw her for so long that who was I not to trust what she said. hindsight now should have asked to be referred to a gynocoligist as she is a midwife. not knowing the medical field and seeing her for so long i trusted she knew what she was talking about. ugh....so mad at myslef for not questioning her!

So after the pelvic abdomen cat scan came back negative I was hopeful that i wouldnt need treatment. the explained id something was smaller than the the vegetable pee that the cat scan wouldnt see it an told me i would need to have preventative treatment. i was schocked that preventative treatment was the full blown cancer treatment. it gives me hope that they say preventative treatment and that I HAD cancer and as far as they know its all been surgically removed. My CA 125 went from in July 104 to post 2 chemo treatments to 7. that gives me reassurance because they said that means my body is responding to treatment. my gyno oncolgist however doesnt take stock in it and says he doesnt do one to after final treatment....way to burst my happy bubble!

next week i begin radiation. still conflicted of what is right about the cisplatin. gyno oncolgist whose older and says that has always been his standard treatment or younger oncologist who states clincal trial shoes know difference in getting it weeks 1 and 4 of radiation vs. once a week. Radioligist whomis youngersays he sides with oncologist . they are in the same Cancer Center.

I cant make that choice as a patient. their suppose to be the experts! UGH!

I hoping that you are well MAbound ! Thank you for listening and advicing as well as encouraging!

I so apppreciate you ladies!

zsazsa1
Posts: 344
Joined: Oct 2018

I  completed 5 weeks of whole pelvic IMRT this past May.  I didn't take a probiotic because no one told me about it.  Two weeks into the radiation, I first developed mucusy stools (that was the breakdown of the mucus lining of the colon and intestines), and then diarrhea every five minutes.  Rad Onc asked me how many times a day I was having diarrhea - the answer was too numerous to count.  I almost quit the radiation.  But then someone on this website told me to add a probiotic.  It helped within HOURS.  I went from every 5 minutes all day and night, to several bouts of emptying out after having eaten, but it was possible to continue the radiation.  I took Culturelle on someone's recommendation.  I could never have finished radiation without it.

Studies on mice showed that if the probiotic was begun about a week BEFORE the radiation, and continued throughout the radiation, the mice had less bowel mucosa damage.  There aren't any human studies that I know of, but if I were you, I'd start the Culturelle immediately.  Someone else on this forum was advised to start the probiotic before radiation, and swears she had NO diarrhea!

As for the brachytherapy, I was told over and over by the rad onc that he could do the vagina with external beam.  I still think I should have had brachy, too, but he preferred not to.

I don't know what to tell you about the cisplatin.  I pushed for the most aggressive treatment I could get, because I have a very aggressive tumor (UPSC/clear cell) that had gotten out of the uterus, as isolated tumor cells seen in a sentinel node.  If I had a recurrence, I wanted to be able to feel that I had done everything possible to stay here for my family.  But I had only carbo/taxol - and that was bad enough.  I can say that ondansetron was a miracle drug for me.

I know how you feel about the delay in diagnosis.  A lot of us here have similar stories.  I was told my symptoms were nothing, didn't warrant the transvaginal ultrasound I already had scheduled for that day, and diagnosis was delayed for a year.  And it was an experienced MD who told me that!

However you decide, I wish you an easy course with it.

Feelingalone74
Posts: 236
Joined: Jun 2019

zsazsa1 Thanks for your response and sharingyou story. Im so sorry that you went through all of that with the radiation! I cant imagine how that must have been for  you.I will get some Culturelle asap. I asked the radioligist if I should take one and he said it wasnt neccessary. Why they dont listen to patients whom have side effects and what helped them is beyond me. SO glad I have all you ladies for advice!

Im so undecided about the brachy that my radioligist is pushing for. My gyno oncolgist said it wasnt neccasary because based on mypathology report the top of my cervix and uterus werent involved so he deems brachy not needed. Radiolgist says standard to do extrenal pelivc radiation and brachy? WHo to believe....Id say gyno oncoligist he saw it all 1st hand but I dont want tomake a wong decisioin. 

I just dont want to have regrets but feel the my gyno oncologist wouldnt tell me to skip it if he felt deemed necessary.

The delayed diagnosis sure sucks! i wish i knew now what I know now. I had a normal papsmear 1 month before adnormal spottingn between periods. Trusted my midwife of over 15-20 years and never gvae a thought I shoud be tested for something. She didnt recommend further testing I took her word that I was just going to be the unforutante one to get my period more during premenapause. A test in the 1st month of that might have saved me for the BIG C progressing. UGH!!!!!

I just want the same as you ....the best care choice an good health so I can continue to be here for my family!

Thank you for wishing me an easy course ! I wish you good health!!!

zsazsa1
Posts: 344
Joined: Oct 2018

Probiotic isn't being recommended because I don't think that anyone has done human studies with it.  But I don't believe it's dangerous or will impede the efficacy of radiation.  I too had my tumor up in the fundus (top) of the uterus, with no lower involvement, so I was sort of okay with the rads onc refusing to do brachy combined with external.  Because I had isolated cells in a sentinel node, I figured that it was more important to irradiate the pelvic nodes.

Feelingalone74
Posts: 236
Joined: Jun 2019

zsazsa1 Ok, I will double check before starting to take it certainly if it helps stop or eleviate the diahreah its worth it!

I didnt have any involvement with the cervix or uterus so that is why my gyno oncologist said for me it wasnt neccesary for me to have the brachy threapy. hes a pretty straight forward doctor so i do believe he'd speak his mind about the cisplatin differences and tell me yes most certainly u need brachy if he deemed it necessary.

barnyardgal
Posts: 220
Joined: Oct 2017

My gynecologist oncologist said at the beginning I would get chemo, radiation, and brachy. My radiation Dr disagreed with the brachy as my tumor had been high up in the uterus (if that makes sense). All three does talked and decided to skip the brachy and just do chemo and IMRT radiation. I've been lucky and have no issues from the radiation. 

I had a similar issue with my Dr before we switched to Kaiser. I had bleeding and when I told him he said it was normal for a woman my age. I never even thought to mention it when we switched does and insurance until the bleeding suddenly got worse.So frustrating that some drs don't take this seriously.

Feelingalone74
Posts: 236
Joined: Jun 2019

Yes, I agree Barnyardgal, Im sorry you went through a similar issue!  so frustrating when some drs. dont take the irregular bleeding seriously and then us ladies end up in the "boat" were in when if caught early a hysteretomy might have been all that was needed. 

It's also very frustrating when docs dont agree and and he patient with no knowledge of what is right or wormg is left to make the decision. I think I am going to go with my gyno oncologist whom performed the hysterectomy . He said no reason for brachy as where the cancer was found wasnt near the vaignl cuff.I hope I dont regret it down the road but he has been in practice for probably as long as the radioligist is old so one would assume he knows what hes talking about. I will also ask the oncoligist where i am being treated , next week when I see her what she thinks. 

I'm so glad that you had no issues with radiation and hope yoou are well now!

Did you have cisplatin chemo therapy during your radiation?

 

barnyardgal
Posts: 220
Joined: Oct 2017

I didn't have cisplatin. When it turned out that I was too allergic to Taxol to desensitize I was switched to adriamyacin. Typically, they combine cisplatin and adriamyacin, not carboplatin. I had already had carboplatin and wasn't allergic so I asked if I could continue with that and the adria and the docs agreed. I was nervous about the adriamyacin as that can cause heart problems but fortunately no issues.

It was mentioned that I would need a hearing test and kidney check before going ahead with the cisplatin. I ended up having the adriamyacin and carboplatin combo but the Dr did mention that carboplatin could cause hearing loss like cisplatin. 

It was never mentioned about cisplatin and radiation but if that makes things more effective I would certainly consider it.

 

BluebirdOne's picture
BluebirdOne
Posts: 198
Joined: Jul 2018

I am certainly not a doctor, but something bothers me about not getting brachytherapy because the tumor was at the top of the uterus. I was advised to get brachytherapy because recurrence is most likely in the vaginal cuff, internally, and cancer cells do migrate, and we still have most of our vaginal tissue. Surgery gets rid of organs, chemo kills systemically,    but what if some cells are still present in in the vagina?  It was explained to me that chemo individually treats 20%, two chemos means 40%. Radiation gets another fraction. I had a Grade 3 tumor with cancerous polyps. I read a study about brachytherapy in that case to help OS vs. none. (I will try to find that study)  I was 1a, so no external radiation was advised at this time. It just seems rational to me if the number one spot for a recurrence is the vagina to have brachy to reduce the chances of recurrence, regardless of where the tumor was located. It all drains downward and out no matter where the tumor was located. Please correct me if I am mistaken. Also the same docs that pooh pooh the efficacy of using ice to stave off neoropathy also might pooh pooh probiotics. This treatment stuff needs to be more standardized. We want to trust the old timers due to their body of knowledge but then we see that they are closed minded to the newest protocols. It is so frustrating. 

MAbound
Posts: 871
Joined: Jun 2016

The difference may be that you have UPCS which has to be treated much more aggressively even when found at an early stage compared to a slower growing hormone driven uterine cancer like endometrial adenocarcinoma.

There have been studies that show brachy ups your odds of NED after treatment in certain scenarios, but it is no guarantee and has the possibility to leave you with issues that can seriously impact the quality of the rest of your life. One's susceptiblity to those risks is likely impacted by what kind of issues you bring with you to the table. A younger, healthier person is probably going to tolerate it better than an older person or one that has other health issues. What has to be weighed is risk (permanent damage) vs. benefit (NED) and considerations of whether or not to "spend" this treatment option in frontline, or "save" it for just in case. The answer is going to be highly personal.

In the case of aggressive uterine cancer types, advanced stage, or low in the uterus origin, it makes sense to "spend" to decrease one's odds of recurrence. A cancer that originates higher up in the fundus has a lower risk of travel to the vagina than when it starts out lower and is a slow growing, less aggessive type or grade. Gravity does not impact the direction of cancer growth, so it is a mistake to visualize it "draining" downward. If that were the case, then there would be a lot of us with advanced stages that would have had lesions in our vaginas at diagnosis. I can't think of anyone here who has said that was noted on their final pathologies.

In the absense of those considerations, one has a reasonable option to "save" that treatment for if it becomes needed later. It's a tough place to be because the risks of either radiation or not having it are not insignificant. A lot depends on the medical advice one recieves and what one can sleep with at night after having made the decision, but I wouldn't say that having radiation should always be a standard part of all frontline treatment. Having one-size-fits-all treatment would be simpler, but there are just too many variables to make that possible. 

Feelingalone74
Posts: 236
Joined: Jun 2019

I agree barnyardgal that treatment needs to be standardized so that the patient isnt left ri decide whose treatment to choose. And interestingly enough at the Center I'm going to did pooh pooh the icing though I did it anyway are also pooh poohing the probiotic. 

I'm going to consult with the brachytherapy doc to hear his thought 1st hand on why he warrants me needing brachytherapy and my gyno oncologist doesnt.

BluebirdOne's picture
BluebirdOne
Posts: 198
Joined: Jul 2018

I agree with some of your premise but the fact that the many of 1st recurrences occur in the vaginal cuff or vault happen regardless of grade or type suggests that there is some mechanism where cancer cells populate that area after hysterectomy. Of course a UPSC  diagnosis will advise adjuvant therapy.  But having brachytherapy therapy based upon where the tumor was located in the uterus was never discussed with me. The Grade of tumor, not location was the defining factor. Cancer cells did not crawl up the vagina from legs or from toilet paper.  So where do you think they originate from? How do the cells get from the primary tumor to the vagina? You cannot have it both ways, either cells metastasize or they don’t. Vaginal cuff tumors are the 1st to recur, so obviously after surgery, and chemo there are still cells there.  Gravity or something else, the cells travel to the vagina regardless of tumor placement. The only place to originate from is the original tumor also known as metastasis. The entire point of adjuvant therapy is to rid the body of errant cells that originated in the uterus and were not removed by surgery. Systemically and targeted. If you are a stage 3 or 4, any type, does it really matter if the uterine tumor was high or low? Brachytherapy is for cells in the vagina, nothing more. People need to understand that this is the number one place of recurrence, and to get treatment according to their stage and type. Also if you could please cite the study about tumors higher up in the uterus having a lower risk of travel to the vagina let me know. Stage IIIb is defined by vaginal spread AT INITIAL STAGING, so pray tell if there was no migration as you suggest how is anyone staged at Illb and above?  You are suggesting that we have no stage 111b or recurrent cancer in the vagina women?  To make that happen uterine cancer cells had to migrate to the vagina, whether by gravity, mucous, blood, who knows. All treatment requires we weigh our odds and we take our chances, depending upon our dx and our physical tolerance for the short and long term side effects. 

MAbound
Posts: 871
Joined: Jun 2016

Location of where the tumor originated was probably never discussed with you because it was rendered to lesser importance by the type of uterine cancer you had, but.....it's not the only factor that weighs into whether or not radiation is needed. There is all this variation in pathologies so there there are other considerations such as lymphovascular invasion (LVI), myometrial penetration > 50%, and origin of the tumor to be taken into account in any decision.

Below is the link to the thread where I was going through a similar quandary that I think just about everybody goes through when radiation gets recommmended to them. 

https://csn.cancer.org/node/305795

It was quite a trip down memory lane for me and I cried when I re-read some of the posts from dear ones no longer with us. How I wish they were still here!!

Moekay's post is the one that addresses tumor location, so maybe she still has the study that discusses it; I can't find mine (yet). A year later, I'm still hunting for where I put some things after we moved and I lost a ton of bookmarks when my husband's laptop recently died. My pc was in MA when I was going through treatment in Buffalo, so I was doing most of my research then on his computer.

You may find this hard to believe based on how you visualize how this cancer spreads, but vaginal implantation of endometrial cancer is considered to be rare during early stages of slow growing, hormone driven uterine cancers. It can happen, so there are surgical techniques that are used during hysterectomy to help prevent implantation metastasis, but brachy for patients in those circumstances can be considered safe to reserve for if and when a recurrence happens. 

Location matters because while the cancer is still contained within the uterus, it tends to grow from the site of origin. It metastasizes elsewhere once it gets into the the lymph nodes (lymphatic metastasis) and vascular system (vascular metastasis) which is why early detection makes such a huge difference in survival. Metastasis to the vagina tends to occur from growth in locations nearest to it...the cervix, the neck of the uterus which has less myometrium to penetrate to reach the vagina, and the pelvic lymph nodes once it gets outside of uterus. It can also happen during surgery or procedures done without taking the right precautions (implantation metastasis). It's why we get sent to a gyn oncologist by our gyns at diagnosis. Brachy, in addition to chemo, is considered a form of insurance to increase ones odds of reaching and remaining NED when one has higher odds for a vaginal recurrence. Type of cancer, stage, grade, LVI, myometrial penetration, and site of origin all have to be considered. It's not a guarantee, so one wants to have confidence that it's really needed before taking on the potential risks of permanent impact on one's quality of life that radiation can cause. That's why it can't just be a given for everyone and needs to be a personal, but well-informed choice.

Regarding how cancer gets going: https://www.ncbi.nlm.nih.gov/books/NBK9963/

An interesting case study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4907293/

zsazsa1
Posts: 344
Joined: Oct 2018

The rad onc I used swore that he had designed the tx plan to bathe the vagina in radiation using external beam (which I wasn't too happy about) but he was adamant that this was the best way to do it.  Hope he was right.

 

BluebirdOne's picture
BluebirdOne
Posts: 198
Joined: Jul 2018

It is another surprise in this journey that there are so many approaches and so many variations of the same disease. I have yet to see a discussion of the effects of hER2 negative status on endometrial cancer. Maybe because it is not important? 

Kaleena's picture
Kaleena
Posts: 1976
Joined: Nov 2009

my gyne onc wanted me to have pelvic radiation and brachytherapy.  My rad onc advised against the pelvic radiation indicating that my risk of getting the pelvic radiation outweighed the-risk if I didn’t.  He said that the long term effect could be detrimental as I was already so scarred.   We finally agreed on brachytherapy only as they indicated the vaginal cuff would be prone to recurrence.   That was back in 2005/2006

my brachytherapy did eventually cause scarring near my bladder and I ended up needing a ureter stent.  That was in 2014 eight years after my brachytherapy.   Then last year (2018) I had a tumor removed near my rectum and at my vaginal cuff (positive) but I needed no treatment as the nodes and tumors were remove.  

I believe if I would have had pelvic radiation I would have had problems much earlier.  Of course that is with me since I was already scarred from my severe endometriosis that I had for years.  Everyone is different 

Feelingalone74
Posts: 236
Joined: Jun 2019

So sorry to hear the Kalwena .I so hope your doing better now!

Wishing everyone on here well!

bluesmama
Posts: 124
Joined: Aug 2014

Quick background. I was originally diagnosed stage 1A grade 1 endometrioid adenocarcinoma. Went two years without an issue. Had a recurrence (a rather large one) on my remaining ovary. I was also diagnosed young at 40. Since it was a recurrence of unknown origin for me and it was stuck to my lower colon, the doctors recommended two phases. 28 rounds of external beam radiation plus cisplatin then phase two was 4 rounds of standard carbo-taxol.

I hate to say it but the radiation+cisplatin was tougher on my body than the carbo-taxol (if you set aside the trauma of losing your hair for the second). Radiation was a breeze for the first two weeks. Once cisplatin was introduced, I was on anti-nausea pills around the clock. Everyone is different though. If you do get nausea, you must get ahead of it. Check to find out if e-mend will be given before your first dose of cisplatin, if not, try to get it. My insurance covered it. There are a lot of anti-nausea pills in your doctor's arsenal. If one combination doesn't work, ask for a different combination. I recall taking mainly two. The one that worked really well for me was Ativan. I also had Zofran and one other. Drink tons of water. Also, a steroids taper worked better for me than having nothing. I did end up with an IV after the second because I was extremely dehydrated no matter how hard I tried to stay hydrated. Having said that, I always felt nauseous but not to the point I couldn't eat nor did I ever need to vomit. I just felt queasy for the rest of treatment and roughly a month after it was done. You'll feel tired, probably lose a little weight and have bowel issues towards the end. I also have permanently darker skin and some other long term effects but it's been two years and I'm about as whole and well as I'll ever feel.

If you're unsure of the brachy therapy, I would ask for a second opinion. Every single percent in my favor mattered enough for me to just throw everything and the kitchen sink at it. But in the end, it's a numbers game with small potential gains statistically. There weren't any guarantees and of course everyone's outcome is unique. You should feel confident about your choice in the end. And don't feel bad about asking why they think you should pursue a particular therapy. 

You'll get through it and good luck! 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Great to see your post Bluesmama. So glad you are feeling well these days.

Love and Hugs,

Cindi

Feelingalone74
Posts: 236
Joined: Jun 2019

Blues mama I am not looking forward to cisplatin infusion tomorrow that's for sure hoping that I just got queasy like and not vomitor  feel overly nauseous! They assure me that they have lots of "tricks" in their bag to help with it.Unfortunately this Center does not use emend as I already inquired about that. They say us something very similar.  They also suggested I take the nausea med round the clock for the 1st few days. I definitely will be doing that! Hoping i dont loose to much weight.  Already down 12 pds prior to surgery. People keep asking have u lost weight.  I want to gain atleast 5 pds. Back

! Did u ice during cisplatin? I did for carbo taxol and wondering if I should do the same for cisplatin.  

I'm caught between 2 very different thoughts on the brachy. I have asked  for my original gyno oncologist at a different practice to consult with the radiologist.  I want it of it will help but also dont want any unnecessary treatment as well.

Thank u for wishing me good luck!

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