Let's talk about radiation

NoTimeForCancer said:

Cindi, not all yogurts are

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!! 

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.

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 said:

Diet during radiation

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?  

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.

Lou Ann M said:

I called it my white on white

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

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 said:

Thank you for all this

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

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 said:

1st Brachy Done! 4 to go...

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

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 said:

Thanks Lou Ann. 
I'm feeling

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

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

cindy0519 said:

Thanks for sharing your

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

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

TeddyandBears_Mom said:

1st Brachy Done! 4 to go...

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

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 said:

Glad this went well.

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

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