Eus results...From a new member

Mary1864

So i had a cea of 7.8, clear chest cat and andominal cat. The endoscopic ultrasound revealed tumor growth not fully entering into muscle lining. There were two lymph nodes that looked slightly inflamed. Next visit to oncologist. Was told stage 3. Recommended radiation first, then surgery, then chemo. Any thoughts?

Trubrit

Oh, I have lots of thoughts

But I don't know just how much to say. 

As you know, we all tolerate and react to medications and treatments in different ways. For me I wanted to know the worst, while thinking that it won't get back that bad. 

When I fist mentioned my treatment plan on the fourm, I was told via private message what some of the worst could be, but I went into it thinking that I would be one of the lucky ones. I wasn't. 

I was told by my Radiation Oncologist that my body didn't handle the radiation well, which means that most of his patients do allot better. 

So, if you still want to hear the worst, I will share. It wasn't pretty, but here I am, eighteen months out, and its mostly a distant memory. 

It won't be too long before this is a distant memory for you too.

Sue - Trubrit

 

Mary1864

Trubrit said:

Oh, I have lots of thoughts

But I don't know just how much to say. 

As you know, we all tolerate and react to medications and treatments in different ways. For me I wanted to know the worst, while thinking that it won't get back that bad. 

When I fist mentioned my treatment plan on the fourm, I was told via private message what some of the worst could be, but I went into it thinking that I would be one of the lucky ones. I wasn't. 

I was told by my Radiation Oncologist that my body didn't handle the radiation well, which means that most of his patients do allot better. 

So, if you still want to hear the worst, I will share. It wasn't pretty, but here I am, eighteen months out, and its mostly a distant memory. 

It won't be too long before this is a distant memory for you too.

Sue - Trubrit

 

I can take it!

I am cautiously optimistic?  Maybe...I have traveled this road with my sister, age 38, breast cancer and a father I lost quickly after diagnosis of lung cancer.  My sister is 16 years a survivor...I have seen both extremes.  But, it was not me going thru the treatment.  

Does radiation destroy surrounding tissues?   Why do they not want to do chemo first to stop this from spreading?

Trubrit

Different

It seems that different Oncolgists follow different plans. 

When I was first disgnosed, I was staged at 3 B. The large tumour had made its way through the rectal wall and I had one of 21 lymph nodes infected. So, my diagnosis started off slightly different than yours. I am now Stage IV. 

I had surgery first, as my tumour was causing a blockage. Then I went through six months of FOLFOX, and 48 hours 5FU. After than I did Radiation, 30 sessions while being hooked up to 5FU 24/7 for those six weeks. 

I don't know why they are radiating your tumour before chemo. You must ask them. Do you have a notebook for all of your questions? 

You will need to get a fair selection of unctions for your bottom, as radiation causes 'sunburn'. I tried so many different kinds looking for something that would soothe. Again, our bodies are different, so you will just have to find out what works for you. I will tell you what worked for me, though, and that will give you some ideas. 

I suffered excruciating pain. This is the part that is scary. And this is also the part that my rad onc said doesn't happen to everyone. So fingers and toes crossed, that you don't suffer. The only thing I can compare it too is childbirth. It felt like contractions and then bearing down. But this would happen over and over again, several times a day, day in and day out. There were times when I could do nothing but cry. There were times when all I could do was crawl from the toilet to the bed, or just curl up on the bathroom floor. 

I strongly suggest getting some adult diapers. Depends were my friend. The diarrhoea was unrelenting. The urge and the diarrhoea were insantaneous. I went through countless Depends and countless clothes. 

I will list a few products (unctions) that I used; but like I said, different things work for different people. 

Aubrey Organic Pure Aloe Vera (its pure, so not a gel but runny) and needs to be kept in the fridge, thus it is cool and soothing. 

Bert's Bees Vitamin E Oil - Still a favourite for those side-effect that linger on.

Polysporin - When it was REALLY REALLY bad with open sores this was a God-send

Bio-Oil - I LOVED this but was a bit worried about the mineral oil in it. Still, I used it allot, along with the Vitamin E oil and Polysporin.

CeraVe - I have used this on my body for a long time, and found that it worked good around the anus area as well. 

Balmex Adult Care I found this after treatments, when the sores continued. Its like Desitin, so REALLY thick and messy. 

Aquaphor - Messy but there were times when it worked fine

DEPENDS - Not to be scoffed at. The Diarrhea can be unbelivable. It waits for no-one and comes out whenever it wants. 

Sitz Bath - This saved my rear so many times. They are so cheap, I would say definitely get one. I really can't tell you how wonderful it was to sit in the warm water. This is another item I would strongly suggest. 

In January of this year, I had a Bidet plumbed into the toilet. Oh my word! If only I had had one during raditaion. Even now, this is a wonderful, wonderful thing to have. 

Do you know when you start treatment? 

Sorry this is such a long post. I hope you breeze through the radiation; my friend did, and many I have heard from on the forum have to. 

Sue - Trubrit

Annabelle41415

Welcome

I'm wishing you much in the upcoming months.  It will be hard but doable.  Everyone is different.  Radiation is not very long in duration but gradually wears you down and if you have rectal cancer you can experience terrible issues with going, including pain, not wanting to go because of burning and constant watery stools.  Sorry I'm not able to post more now, but will try soon.  Welcome to the board and upcoming treatment to go very well.

Kim

annalexandria

Trubrit said:

Different

It seems that different Oncolgists follow different plans. 

When I was first disgnosed, I was staged at 3 B. The large tumour had made its way through the rectal wall and I had one of 21 lymph nodes infected. So, my diagnosis started off slightly different than yours. I am now Stage IV. 

I had surgery first, as my tumour was causing a blockage. Then I went through six months of FOLFOX, and 48 hours 5FU. After than I did Radiation, 30 sessions while being hooked up to 5FU 24/7 for those six weeks. 

I don't know why they are radiating your tumour before chemo. You must ask them. Do you have a notebook for all of your questions? 

You will need to get a fair selection of unctions for your bottom, as radiation causes 'sunburn'. I tried so many different kinds looking for something that would soothe. Again, our bodies are different, so you will just have to find out what works for you. I will tell you what worked for me, though, and that will give you some ideas. 

I suffered excruciating pain. This is the part that is scary. And this is also the part that my rad onc said doesn't happen to everyone. So fingers and toes crossed, that you don't suffer. The only thing I can compare it too is childbirth. It felt like contractions and then bearing down. But this would happen over and over again, several times a day, day in and day out. There were times when I could do nothing but cry. There were times when all I could do was crawl from the toilet to the bed, or just curl up on the bathroom floor. 

I strongly suggest getting some adult diapers. Depends were my friend. The diarrhoea was unrelenting. The urge and the diarrhoea were insantaneous. I went through countless Depends and countless clothes. 

I will list a few products (unctions) that I used; but like I said, different things work for different people. 

Aubrey Organic Pure Aloe Vera (its pure, so not a gel but runny) and needs to be kept in the fridge, thus it is cool and soothing. 

Bert's Bees Vitamin E Oil - Still a favourite for those side-effect that linger on.

Polysporin - When it was REALLY REALLY bad with open sores this was a God-send

Bio-Oil - I LOVED this but was a bit worried about the mineral oil in it. Still, I used it allot, along with the Vitamin E oil and Polysporin.

CeraVe - I have used this on my body for a long time, and found that it worked good around the anus area as well. 

Balmex Adult Care I found this after treatments, when the sores continued. Its like Desitin, so REALLY thick and messy. 

Aquaphor - Messy but there were times when it worked fine

DEPENDS - Not to be scoffed at. The Diarrhea can be unbelivable. It waits for no-one and comes out whenever it wants. 

Sitz Bath - This saved my rear so many times. They are so cheap, I would say definitely get one. I really can't tell you how wonderful it was to sit in the warm water. This is another item I would strongly suggest. 

In January of this year, I had a Bidet plumbed into the toilet. Oh my word! If only I had had one during raditaion. Even now, this is a wonderful, wonderful thing to have. 

Do you know when you start treatment? 

Sorry this is such a long post. I hope you breeze through the radiation; my friend did, and many I have heard from on the forum have to. 

Sue - Trubrit

I'm curious, Sue...

what were they radiating when you had already had had the surgery and removed the tumor?

I saw the famous Dr. Lin for a 2nd opinion and he suggested radiation, although nothing was visible at that point.  My regular oncologist said no radiation, so I never had it.

Confusing.

Trubrit

annalexandria said:

I'm curious, Sue...

what were they radiating when you had already had had the surgery and removed the tumor?

I saw the famous Dr. Lin for a 2nd opinion and he suggested radiation, although nothing was visible at that point.  My regular oncologist said no radiation, so I never had it.

Confusing.

Who knows!

I guess they wanted to get anthing that might have been left-over from the surgery.  Cover the tracks, so to speak. 

It was a hellish adventure for sure. I would NEVER do it again. Not that I could. I think its a one shot only treatment. 

Sue - Trubrit