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Let's talk about radiation

AWK
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Joined: Mar 2013

I see a lot of great questions, concerns, information on it buried in other threads and thought it would be good to start a conversation on it.  I was diagnosed originally with Stage IIIC UPSC in April 2013.  My cancer continues to be active and progressive with mets found shortly after I finished frontline chemo and radiation.  I had 28 topical radiation treatments and three brachytherapy.  In my progression of disease over the last two years i ought I would share that the areas that were radiated were where active mets and cancer were originally found - targeted at the "source sites in my mind".  I asked the doctors about the need for radiation and the difference between that and chemo.  He had an interesting answer which was think locally (radiation) and act globally (chemo).  The radiation is targeted and the chemo is systematic.  

I did well with both the radiation and brachytherapy and thought I would note that with all of my progression the radiation fields are clear with no active cancer.  My issue is systematic.  But I am doing well and living fully.  Anne

TeddyandBears_Mom's picture
TeddyandBears_Mom
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Thanks for once again thinking about the bigger picture and starting this new thread. It will sure help to find the answers down the road too!

Also, appreciate the answer to why both.  Not that I like it but I do get it. :-)

I hope you are getting close to the end of your tough days from your last treatment!

Cindi

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Editgrl
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Thanks for your information, Anne.  I do have a couple of questions.  I was going to ask the radiation oncologist next week, but since we have this thread...

Did you have a scan between chemo and radiation? Did you initially have tumors outside of the uterus or cancer cells in your pelvic wash?  

I was diagnosed with Stage 3c, Grade 3 carcinosarcoma, very aggressive.  While the tumor itself was contained in the uterus, they found cancer in some of the lymph nodes they removed, but my pelvic wash was clear.  I'm trying to figure out if the radiation is targeted, what do they target when there is no met? I'm not speaking of brachytherapy here.

I understand chemo being systemic.  I guess all of my experience hearing about radiation from people I've known is that there is a specific target they are aiming at.  Otherwise, it seems to me like using a sledgehammer on a thumbtack.  

I would also like to hear from slender women who have undergone pelvic radiation which is what my doctor recommended.  He already warned me that because of my size, i would probably have significant side effects.  I'm trying to decide if this treatment, at this time, is worth the risk.

Chris

AWK
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Joined: Mar 2013

This will be a good source of information for all of us!  My cancer, also Grade 3 - involved a tumor in my uterus that penetrated 81 percent, a tumor in my right ovary and three pelvic lymph nodes.  My pelvic wash was clean, now we know the cancer was already systematic at that point.  It was just waiting to reveal itself.  I didn't have scans between chemo and radiation; just rolled from one into the other.  

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Abbycat2
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I decided not to receive brachytherapy. Since I didn't have Ca on the vaginal cuff, I didn't see the point of radiating healthy tissue. Now, should I have a recurrence on the vaginal cuff, I would quite likely op for the brachytherapy. I saw a radiologist after being diagnosed with stage 3a UPSC, a grade 3 Ca. He said that radiation is always aimed at something, like a gun.  In my case, he said that he could not radiate the cancer in my peritoneal cavity without destroying my colon, stomach or urinary bladder. Another words, without killing me. I had a positive pelvic wash that only chemo could address.

AWK
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Joined: Mar 2013

In terms of the radiation my understanding is they target the specific sites where the cancer was in order to destroy anything lurking there.    In my case the brachytherapy was recommended for the same reason - to go after anything lurking there even though my cervix (removed) and vagina were cancer free from a surgical perspective. 

Now with hindsight I wonder about impacts to the bones and also bone marrow; especially given my issues wth bone marrow production.  It is hard to say if the radiation is tied into that given my thirty ish infusions etc.  Either way I wouldn't change  thing about it.  

Side effects for me were fatigue and  course - diahhrea.  I got medicine for that after about 10 rounds.  I never got burns internally or externally.  Externally my nurse told me to get Aquaphor or something similar.  She said to put it on the radiation spots when I got home after the treatment starting with the first one.  Not to wait for itching or burning.  I think that was great advice.  

Hugs and prayers ladies!  Anne

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Lou Ann M
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I don't remember having a scan between , but i had what thery call a sandwich treatment, 3 chemo, radiation, and 3 more chemo..  i think they have very specific areas that the aim at  the radiologist does do a scan and then goes over it to plan exactly where his machine willmbe aimed.  They make a mold for you to lay on to keep you from moving and you are not supposedto move at all.  i think in my case they radiated the spots where the surgeon sliced and diced. to make sure they were clean. That area of me has remained cancer free.

My cancer had spread out of the uterus into the cervics and 3 small spots behind no lymph node involvment, but the wash showed cancer cells.  Hugs and prayers, Lou Ann

 

 

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Editgrl
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Thanks for the detailed info.  In some ways, I am more concerned with radiation than chemo.  I understand how the chemo works systemically.  It's just the idea of firing all that radiation into my body that kind of freaks me out.  I also saw the side effects that my BF went through during his radiation.  Truth be told, he did not take very good care of himself diet-wise during any of his treatment, and I can't help but think that had, and continues to have, a lot to do with how his body is handling the after effects.

Hugs to you, Lou Ann.

Chris

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NoTimeForCancer
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Chris,

I am on the slender side and my radiologist raised the issue of side effects from radiation because of this. 

I will tell you I started by asking him why I even had to have radiation since 'the equipment' was gone?  He said it is targeted (which we have already heard) and for the brachy that cancer can come back in this area.  Ok, I am not sure of that, but I was doing everything I could to put this in the rearview mirror.

He did talk about being smaller and how radiation would effect my digestive track.  I was completely freaked out about not being able to work with debilitating diahrea! I really was a wreck.  I did sit down with a dietician who had given me a powerpoint on how probiotics can help the digestive track during radiation.

The study, seems barbaric actually, was about 60 women being treated with radiation for cervical cancer.  The ones who did NOT take probiotics were hospitalized with dehydration and had 'loose stool' in high numbers.  The comparison to the women who took probiotics and did not have these side effects were shocking.  I had been taking them before all this started and I really had very few side effects. 

I also forced myself to eat protein daily to help the bone marrow in the pelvic area that was getting the radiation. (IMRT is targeted radiation.  They did do a CT for planning purposed of the IMRT and I always had to have an xray before each IMRT to match up the plan with how the body was that day).  I stayed away from highly processed soy, soy protien isolates, as the body treats that like estrogen and hormones cannot be used on my form of agressive cancer, UPSC.

I shared the study with people I work with and one woman started taking them because of it.

Editgrl's picture
Editgrl
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This is exactly the kind of feedback I was hoping for.  I started taking probiotics shortly after my hysterectomy.  It was suggested by my gyn/oncologist to help with the bloating/gas I was having, and I have continued with them.  The fact that you find they helped you with radiation is very reassuring.  I wish I had known this when my BF was going through radiation for prostate cancer.  It might have helped him, too.

As far as protein goes, I am also very conscious of that, using a food diary now to make sure I eat enough calories/protein.  For me, right now, there is no such thing as too much. I am determined to keep my blood counts up during chemo...  I do not want any delays. I am grateful that for the most part, my appetite has remained and has made it easy to keep on eating regularly.  My gyn/oncologist jokingly told me that my job between my post/op appointment and radiation (other than dealing with chemo) was to "bulk up."  We both laughed.  Bulk is just not in my physical make up lol.

I am really curious as to what they will be "targeting."  Areas where they removed the positive lymph nodes?  How do they make that decision when the only tumor was in the uterus and that's gone?  They must have some protocol for that.

This is why I love the women on this board so much.  So much information and practical experience. You all rock!

Chris

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TeddyandBears_Mom
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Hey Chris and No Time,

I know nothing about probiotics except from TV commercials and yogurt (which I hate).  Is there a supplement that I could take? Or, what are you using? I would like to incorporate something to help with the stomach issues from chemo.   I do like frozen yougurt. Does that count?  Concern though because it has a lot of sugar.

Chris, I'm still amazed at how well you are tolerating the chemo.  As tiny as you are, I would have expected it to be really hard for you. So glad it hasn't been. My appetite isn't all that great. And, the fatigue is high for two days each week. I'm still not sold that weekly is better!

Take care,

Cindi

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Editgrl
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The probiotic recommended to me by my GYN/Oncologist was Culturelle capsules.  Now, it only contains lactobacillus and inulin, but it seems to do the job.  I also have Pro Greens which has a wider range of probiotics along with a bunch of vegetable extracts that RoseyR has recommended in several of her posts to help with side effects of chemo.  However, I will tell you that I have a problem choking it down.

It doesn't taste bad, but it doesn't taste good.  I have resorted to mixing it in a smoothie and I take it during the first few days of chemo. I don't know if that affects its effectiveness but it does make it more palatable.

A friend with bladder cancer is taking acidophilus pearls and seems to be having good luck with them.

I, too, am amazed at my reaction to the chemo and very grateful.  I hope my cancer cells are not as resiiient as I seem to be.

Chris

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NoTimeForCancer
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Cindi, not all yogurts are the same and the important thing in yogurt is the live and active culture - I don't think they can live in frozen state . 

There are a million different manufacturers out there, I took Accuflora (Walmart - $10) and took it to my dietician to look at.  She was really impressed that it had lots of both kinds of little critters. 

Chris, I will tell you what my chemo nurse when we first sat down before I started the chemo/radiation, and maybe you were told this too.  Because the radiation is targeted in your pelvis, where there is a lot of bone marrow, getting the last couple chemo's in might be difficult.  (I am not sure if you are having the "sandwich" treatment or not  - 3 chemo/radiation/3 chemo.)  For number 5 I did the blood work in advance and it was low but the morning of chemo it has popped up very nice thank you!  For number 6, again the numbers were low and I thought it would pop up again, it didn't.  It was devastating to me and my BFF.  We both left crying, we were so ready to be done.  It was delayed one week.

I agree with you on radiation.  It COMPLETELY freaked me out.  I really had a problem wrapping my head around this.  For me, it brought on fatigue I had never experienced before.  I sat in my office just thinking how I had never felt like this before.  When I got home I usually crashed on the couch at 7 pm and dragged myself up to bed somehow. 

I am betting most of us thought we could never make it, but you will and you will amaze yourself.  There may be a few little bumps along the way, but it is very doable!! 

Editgrl's picture
Editgrl
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I'm getting the chemo first, then the radiation.  Not sure which way would be easier to deal with, but I do feel good about having the 3 weeks between each of the chemo treatments.  It gives me a lot of good days which is very good for me mentally and emotionally.

The fatigue from radiation is something I witnessed with my boyfriend.  He would go to his treatment in the morning, then we would go to lunch, then he would just fade away for the rest of the day.  Luckily, he is retired, so he could just veg at home. I don't know how someone who worked a 40 hour a week job could handle that.  I'm impressed that you continued working.

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Lou Ann M
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I was dx with stage 4 very aggressive endometrial cancer in Aug. 2012.  1st round treatment included 28 external and 2 internal radiation treatments.  External was aimed  at 9 different places and took a total of about 20 minutes.  i hated the laying still for that long, but the result was good .. i have had no return to the area of radiaation.  The only side effect that I had at the time was diarhea, which was controlled with Imodium.  I was teaching full time at the time and missed no days of school because of it.  I had no burns or even redness on my skin.  For awhile my large bones in my pelvis had trouble manufacturing blood during chemo, but that straiten out after a few months,  i had some problems with diarhea for awhile after, but that to cleared up.  All in all it was fairly easy.  When My cancer reoccured my radioloigist recomended chemo because of the systematic nature of my cancer.  Hugs and prayer to all, Lou Ann

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caedmon22
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i too wondered what exactly they were shooting at with radiation, but my rad onc said that the pelvic radiation would reduce my statistical chances of recurrence there from 20% to 10%, and the brachy would reduce statistical chances of recurrence there from 15% to pretty much 0%. since uterine clear cell occurs in 4% of cases, i figured i might as well do my best to get out ahead of those numbers in any way possible. (and yeah, i know i'm a statistic of one -- just getting this cancer in the first place seemed so random...i had ZERO potential pre-conditions). mine was stage 1a, grade 3 (clear cell). much less than 50% into the myometrium, high in the uterus, clear nodes and pelvic wash. BUT they found cells in the uterine lymph. so i guess the idea was on the off chance those cells had buddies who had escaped into neighborhood but weren't going to show up in the path report, this was a way to head them off at the pass. i haven't had any adverse effects from the radiation so far. tiny bit of poo issues. have to do the dilator, which i could live without but is a small price to pay. i do worry about recurrence. especially as i get closer to my next visit to my surgeon. it's an aggressive cancer. but i also feel like i did what i could at the time to prevent it, according to information available to me.

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TeddyandBears_Mom
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Hi,

What is the schedule for the internal radiation?  It seems like 3 times is the standard? If that is true, how are they scheduled?  I mean, is it every day for 3 days, or 3 weeks apart like the chemo normally is or???  Also, I'm seeing comments that it causes fatigue.  How long does that last?  Also, for those that had all chemo first, then had the brachy, did you get a few weeks reprieve after the chemo was finished? 

Thanks in advance.  I'm sure I'll have more questions the closer I get to this part!

Cindi

AWK
Posts: 364
Joined: Mar 2013

The appointments lasted an hour mostly due to the positioning and set up.  The actual treatment was only five plus minutes at most.  The team was gentle and respectful so that helped.  My doctor prescribed Ativan for each treatment to cut down on the anxiety, I took it about 45 minutes prior.  I had low energy just rom the cumulative effects of chemo, then radiation then brachytherapy; I wouldn't attribute it just to the brachytherapy.  

I had a  break between chemo and radiation, I think about ten days.  After I had the brachytherapy treatments I would go home and crash due to the Ativan.  It wasn't easy but i didn't have pain and recovered well.  

hugs and Happy Sunday!  Anne

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caedmon22
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hi cindi -- i had 25 rounds of pelvic, followed by 2 brachys, starting immediately. i went from external pelvic to the first brachy session -- which is the long one where they do all the prep. by then i was already in full-blown radiation fatigue. my experience with the brachy was that it knocked me on my keester for three days. i could barely peel myself off the bed. i also had a very hard time with the first appointment, but i think that was because it followed so closely on the pelvic rads and everything "down there" was tender. that first brachy was on a thursday. i was supposed to go in the following monday for the last one, but because i had such a hard time my rad onc pushed that one out to wednesday. by wednesday i was feeling much better. on his advice, i took two ativan and a vicodin, and going through the experience was fine. i still had 3 days of major exhaustion afterwards. but two weeks later i did an extended solo road trip, so general recovery was pretty fast for me. i didn't have chemo, though. only radiation. from what i've seen on other boards of folks who had brachy (but not external rads), they are usually scheduled a few days apart. most people didn't seem to have as much fatigue as i did. and not much problem with side effects. the words "piece of cake" came up quite a bit. i hope yours will be that easy too Smile.

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TeddyandBears_Mom
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Thanks Anne and Caedmon22 for your replies.

Low energy seems to come with the territory regardless of the "poison"..... I mean medicine. .... ugh!

I'm on my hardest weekly chemo impact day today. So, have done nothing but sleep or lay around under the TV.  I find it interesting that we just do it. And, we get through it to do it again. We really are strong women.  

My meeting with the radiologist isn't until early November. I'll share what he tells me after that.

Thanks for the hugs Anne!

Cindi

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Sandy3185
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It does seem like 3 sessions is the most common therapy. Mine were scheduled one week apart, so it only took 2 weeks. As I said before, I didn't experience any pain or discomfort and only minor fatigue and no diareah. It was the easiest part of my treatment! I was very unsure about doing any radiation. I finally decided that if the chemo, which is supposed to kill all the cancer, missed a few stronger cells, maybe the radiation would catch any that had stuck around. Not very scientific, but it made sense to me at the time. I'm still not sure I made the right decision and Dr Wenham was kind of on the fence about it when I pushed him although he did come down on the side of doing the brachy. I would ask him again Cindy as it will probably be a lot more uncomfortable for you.  Hope you recover quickly from your latest treatment. Sandy

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TeddyandBears_Mom
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Thanks. The decision to do or not is a hard one. If I didn't have my pre-existing issue (vulvadynia) I would not hesitate. Because I'm really afraid not to do it. I think I will talk to Dr. Fernandez first and see what he says. I don't have another appointment with Dr. Wenham until 2 months after the brachy.  When I asked Dr. Wenham about both chemo and brachy, his answer was we treat serous, seriously.  And that recurrence is most likely to hit the vaginal cuff first. That was before my surgery and I didn't push for more information. I wish we all had some black and white answers. But, we know that isn't possible!

So, if I don't do it... Will I be constantly worried about a recurrence? And, if I do, do it.... Will I have to deal with discomfort for the rest of my life?  Anyway, I will continue to ponder this over the next 6 weeks.

Glad to hear you didn't have issues though. That makes me hopeful that going forward with it, won't be too hard for the "normal" things.

Hugs to all,

Cindi

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Abbycat2
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My gyn onc told me that I had clean margins with all that was removed with my hysterectomy and that my chance of eventually developing cancer on the vaginal cuff was small. He said that brachytherapy reduces the chance of a recurrence on the vaginal cuff but does not reduce/prevent a distant recurrence. With UPSC, a distant recurrence is more likely, worse for stage 3 and 4 women but not unheard of with stage 1 or 2. I had a positive wash so I wouldn't be surprised if the cancer spreads outside of the pelvis.

gratefulwan
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Joined: Aug 2015

Thought I would add my comments on this subject since I have started my radiation tx first.  I"ve had 10 tx   with 18 to go.  25 external and 3 internal.  I started probotics before starting the tx and so far so good.  No side effects, no rash or redness.  Just very tired.  The tx only takes about 8 min. but its the driving there and back which is tiring too.  It took a lot for me to wrap my mind around all this.  With every thing gone and AC125 normal the Drs. still wanted me to do radiation and chemo. But the wash did show a few ca cell in cavity which could only be seen by microscope.  So the Rad. Onc. Dr explaiined it to me this way " Think of a garden plot that has been plowed and ready for planting.  You know there are weeds in the ground, can't see them but you know there are there sooo if you don't put something there to kill them they will grow. So it is with the ca. cells that we can't see."  So being a farm girl I knew what he was saying.  BUT not looking forward to the Chemo.Undecided  Will start that  sometime in Nov.  I really appreciate all the info found here on these comments. They have answered a lot of my question about the chemo. I am very grateful for family and friends that are supporting me in this.  My prayers go out for each and every one of you.

Wanda

Editgrl's picture
Editgrl
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My first appointment lasted well over an hour and included a short physical exam and my first pelvic since surgery.  Yikes.  Things are a little tight down there!  The good news is that everything is normal or at least, is the new normal.

Because cancer was found in one of my para-aortic lymph nodes, my proposed field of radiation is extended.  It would not be merely pelvic, but would include a second field that is essentially a strip part way up my abdomen.  He drew diagrams for me.  And my radiation would include brachytherapy, 3 sessions a week apart, at the end of the external beam treatment.  The external treatment would be the standard 25 sessions.

He was very detailed about the process, the preparation, long- and short-term side effects possible.  Very patient about answering my questions and also very open about the fact that overall, the treatment for carcinosarcoma is essentially lifted from the treatment for adenocarcinoma as it is now considered a high grade carcinoma according to the NCCN guidelines. It seems that all of you with UPSC get pretty much the same protocol as well.

I asked him how people who were slender like me handled the radiation.  He said in his experience, that slender people handled it better than heavier people and also handled it better than chemo.  Interesting, because that's the opposite of what my gynecologic oncologist had said.  He then explained that while chemo dosage is dependent on weight, radiation is based on body dimension.  That's something I had not thought about at all, though it makes sense.

In any case, nothing is going to happen for a while.  We talked about NCCN Guidelines for treatment, the fact that he is consulting with colleagues at UC Irvine, discussions to be had with my medical oncologist and surgeon.  All in all, I was impressed with his thoroughness and openness as well as his willingness to entertain any and all of my questions.   

Am I all in about radiation?  Still scares the crap out of me, but I feel a little bit better about the possibility. 

Editgrl's picture
Editgrl
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Did those of you who had radiation do a low-fiber diet the entire time?  I just looked over the Mayo clinic's guidelines for a low fiber diet and I think I'm going to have to get really creative to get enough protein in me.  This may push me to consult with a nutritionist. And did anyone do the BRAT diet?  

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NoTimeForCancer
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Yes, I did cut out high fiber but found BRAT (bananas, rice, applesause, toast) too boring for me.  I liked eating cheese as it was a good source of protein, calcium and had 'binding' effects.  Again, I did take probiotics throughout, still do, and believe that helped.  

I knew the radiation would effect the bone marrow in my hips, and getting enough protein to finsih the back end of the chemo was always in my mind as well.  I think the dietician who specializes in helping cancer patients is a great idea.  Knowing what to eat, especially at a time when you need the most nutritious punch, was a plus.

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Soup52
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this is my first post. I have searched many cancer forums and this is the first one I have found with many recent posts. Thank you! I tried low fiber with radiation and sometimes I had constipation and other times diarea. I wish I had looked more into probiotics as it seems it has helped others. I have had one internal radiation now and will have 2 more. I am still going to get some probiotics as I'm told my side effects may take 2 ekes to subside. I am grade 3c and was told that my cancer could effect vaginal cuff so that is why I am having internal. I see the oncologist on February 11 and will find out then when chemo starts and what kind. I'm wondering how that will effect me too. Right now I'm afraid to eat almost anything. I'm not obese but am close to the right body weight right now, mot heavy.

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NoTimeForCancer
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Soup52, I am glad you found us and hope we can help. 

I understand the fear of eating and not knowing what will help.  A lot of us have been told the BRAT diet (bananas, rice, applesause, and toast).  I know some foods were more 'binding' than others - cheese for example, so I wasn't afraid to eat that.  I will say what you may have read a million times - we are all different.  

I will share with you that my dietician showed me a study where women taking probiotics had a DRAMATIC difference in debilitating diarrhea between the two groups.  I had been taking them before my diagnosis and have continued to this day.

Please don't hesitate to ask this group anything - it is a great group of women.

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EZLiving66
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Hello Soup!  I'm glad you found us.  The ladies here are great and will give you their honest opinion on just about anything.  I have not had any radiation but the chemo caused a lot of problems with my digestive system.  My doctor recommended the probiotics and I do believe they have helped.

What was your diagnosis?  What Stage are you?  Did you have a total hysterectomy?

Wishing you all the best!

Love,

Eldri

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Soup52
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yes I had a total hysterectomy. I'm grade 3C and it's clear cell which I understand isn't a good thing. I felt so much better after the surgery, but the radiation was harder and I hate the internal. Just one more of those

Soup52's picture
Soup52
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yes I had a total hysterectomy. I'm grade 3C and it's clear cell which I understand isn't a good thing. I felt so much better after the surgery, but the radiation was harder and I hate the internal. Just one more of those

TeddyandBears_Mom's picture
TeddyandBears_Mom
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Soup - I think we all hate the internal(s)!!!  Brachy or Exam - both suck big time!

I  used to dread a once per year (or less when I procrastinated) pap. Now, I get to have that exam every 3 months. Oh joy!

We all have to go into this process with a different mindset. And, if we are real lucky, we get great doctors that help us get through the junk!

Stay strong Soup. One to go and you are done with radiation! 

Love and Hugs,

Cindi

Editgrl's picture
Editgrl
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I'm glad that you found us.  It's good to be able to talk to others that are going through or have gone through the same thing.

As far as your upcoming chemo, there is a thread here called "Ladies going through Chemo" that has a lot of good, recent information on how the different drugs have affected different women.  If you aren't tired of hearing it yet, it does affect everyone differently, though there are some issues that are pretty common to everyone.

Hang in there!

Chris

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Lou Ann M
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I called it my white on white diet.  My radioligist said to eat white bread , white rice, cooked  or canned fruit and veggies.  He never really mentioned not eating protein.  I always had meat, eggs and cheese.  Raw fruit and veggies seemed to be his biggest concern.  Lou Ann

TeddyandBears_Mom's picture
TeddyandBears_Mom
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So I met with my Radiologist today. The guy spent over 1 hour with me just explaining everything and answering my questions. I have never had a doctor do that.  I have to say, the care I have received from Moffitt from both doctors, nurses and supporting staff continues to be top notch. I feel very fortunate to have them in my corner.

Anyway, he has suggested that I do 5 lower doses rather than the standard 3. He said this will minimize damage to the tissue. And, I would do 2 per week. Something like Monday and Thursday.

He also will use a numbing solution to minimize any pain during the insertion.  And, he is addressing my concerns with post dialator use pain. I'm going to try a prescription ahead of anything being done and see what it does for me. BTW, he is the first doctor to even offer a possible solution to my current problem. So, I'm excited to see if it can help.

I am leaning towards going forward with the brachy for the following reasons:

1. UPSC is most likely to recur on the cuff first. I asked him if I didn't do the procedure and had a recurrence, could I have it at that time.  Yes, but it would require a lot more radiation and could possibly require additional chemo. 

2. I hope I got this part right: 14% chance of recurrence without it and 3% chance with it.

3. I asked him why chemo can't take care of all of the cells since it is covers the entire body. He said there may be cells that are not cancer yet that would not be impacted with the chemo. And, these cells are most likely to be on the cuff since it was connected to the sight of the tumor.  So, over time they would have a chance to turn into a cancer/tumor.

4. He said we are signing up for a lifetime of the dialators but feels that if they are used consistently for 2 years, chances of scar tissue closing the vagina off are low after that.  But, they don't have data to prove it and he is going by what he has seen with his patients.  Oh, and he said 2 times per week is enough.

5. There are minimal side effects from the radiation.  Everything is very targeted and controlled so organs and other areas don't get hit.

He wanted me to take some time to think about it and then call them back to schedule if I decide to do it. They are very accommodating.

I'm feeling so much better about everything now. It is a very different view than I thought I would land on. I truly thought my decision would be to not do it. But, after considering all of the above, I want that extra insurance of getting myself to NED. And, this will help put it in my rear view mirror!

Sorry for the long post but I wanted to share my experience.  And, I hope this helps someone down the road.

Love and Hugs,

Cindi

 

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

Thank you for all this information!  It is greatly appreciated since I will have to be making this decision in the near future.  I briefly talked to my PA about this and she said the same thing.  Since my cancer had spread slightly into my cervix, which made me Stage II, I was a candidate to radiation.  Please let us know how this goes!!

Love,

Eldri

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Eldri:

I can tell you from personal experience one of the long term effects of Brachytherapy.   I developed hydroureteronephrosis in my left ureter near my bladder.   At first they thought that a soft tissue mass was causing the blockage, my then my urologist indicated that it was scarring from the brachytherapy.

On another note, please know that I had 3 brachytherapies in August of 2006.   I developed hydronephrosis in 2014 - so it was a good 8 years after that.   I did not have pelvic radiation because of how much I was already scarred.

Originally they indicated I wouldn't need any radiation but it wasn't until afterwards they wanted it.  

 

Love and hugs,

Kathy

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Today was easier than I expected. Dr. Fernandez made me feel comfortable from the beginning. He used a prescription level lidocaine before starting. I had no pain. Just some pressure that was not comfortable but also not painful. Fairly easy to deal with.

I was able to keep my clothes on from the waist up and my socks. They also had me put a gown on. And, they gave me a nice warm blanket to cover up with. They were very respectful and caring from start to finish. I never felt embarrassed. That surprised me the most. Well, I did take 2 Lorazapam pills before so that could have had something to do with it too! lol  I do have some burning this evening but not bad.  The actual radiation is only 4 minutes. The rest of the time is for set up.

Next treatment is on Tuesday. I hope it goes as well as this one did.

Then, getting on with the dialators with the hope of improving what is already a bad situation is the goal. I figured I was already damaged goods so I might as well do this. Because I believe the dialators would have been necessary even without the radiation based on my current experiences.

This was such a hard decision. And, as of now, I feel I made the right one for me.  I just don't want to have regrets down the road should cancer decide to recur. And, by doing this... I know I have done everything offered to avoid that. The rest is out of my hands.

Love and Hugs,

Cindi

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Glad everything went well for you today.  I hope the next 4 gone as easily for you.  You are doing everything you can to keep this beast away.  I had only 2 of the brachytherapy  treatments, and I think they were the easie3swt part of all the treatments That I have had.  Hugs and prayers, Lou Ann

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Thanks Lou Ann. 

I'm feeling tired today. Not heavy fatigue, just low energy. No pain. I think I'll rest mostly and not push it.

Also, feeling a little blue. I haven't had a 'blue day' in quite a while. I know it will pass.

I agree with you. This is certainly the easiest part of my treatments so far.

Love and Hugs,

Cindi

cindy0519
Posts: 173
Joined: Nov 2015

Thanks for sharing your experience.  I too will be heading this direction in mid April thought I may only have external radiation. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

I hope all of your treatments go well.

As you can see from many ladies on this site.... It is doable! You wil be done before you know it!

Love an Hugs,

Cindi

Cucu me
Posts: 214
Joined: Apr 2015

Wishing you easy and succesful treatment!!!!!!!!!!!!!!!!!!!!!!!!!!

And your hair back soon!!!!!!!!!!!!!!!!!Smile

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Thanks Cucu! Yep, I keep looking for a new sprout every day. Nothing so far! lol

I hope all is going well for you. I think of you often. :-)

Love and Hugs,

Cindi

Kaleena's picture
Kaleena
Posts: 1978
Joined: Nov 2009

Great to hear everything is going well with the brachytherapy.  You will get tired and blue at times.  It's really weird how quick that procedure really is!   

Hugs!!!!!!

Kathy

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I know how anxious you were about this, so it's good to hear that it was relatively easy and painless.  And it only happens 2 more times!  You'll be done with it before you know it.

Chris

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Thanks for your support Kathy and Chris!

I was very tired yesterday. Seems like chemo and radiation have that effect on me. Either that, Or I have learned to like being lazy! lol

 

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

I'm glad you're doing so good!!!

Love,

Eldr

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Thanks Eldri. I hope you are continuing to heal. You had such a rough time!

Byr15
Posts: 9
Joined: Jan 2016

Hi, I am new to this site, so not quite sure how to get in the thread here. It is reassuring, sort of, but inspiring to read everyone's posts! I have UPSC IIIC1, just finished 6th chemo Dec 24, and will start External Pelvic Radiation next week, Jan 21, it seems so sudden. Have already had my CT planning/mapping appt, took 2 1/2 hrs, I was exhausted, still fatigue from chemo. I finally understand that the radiation is targeted at the clear margins - I guess the surgical margins- it is recommended for my aggressive high stage cancer-although I did some research and asked a lot of questions. The long term effects of radiation concern me more than the chemo. I will make myself more familiar with this site, and hopefully don't become as repetitive here, since I am not quite sure where to post. 

Thank you all and good luck. Terry

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