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dn220

Hello everyone, I've been lurking and reading, have posted a couple of times but this is really just now "soaking in" with me.I was diagnosed with kidney cancer and had my right kidney removed july 12th of 2007, after my surgery I just felt so bad, was getting weaker and weaker and felt horrible. I kept telling my docs that something was wrong but they would not listen, I had been having trouble with bowels for a while but was told it was just from all the surgery I have had lately, well then I started bleeding and finally got one of my docs to test and was found with a 10cmX10cm mass in my rectum. I got the results Nov 27th of 2007. Well because I had no insurance at the time, the chemo doc said she would put me on xeloda as she had samples. Well last week my insurance came thru and I asked the NP if they were going to change my chemo now and she said she was sure the doc would want to but she would let me know. The doc had told me that xeloda was not the "preferred treatment" well she said that she would leave me on xeloda. My question for u al is, has anyone else recieved xeloda and radiation but nothing else? I have had 12 radiation treatments now and have 13 more to go then 4 weeks later I will have a resection done with a permanent colostomy followed by 5 more weeks of chemo. Is this the normal treatment? I am really glad that I found this board, I have found out more stuff from reading posts here than the docs have ever told me. Thanks,
Debbie

kmygil

Hi Debbie,
I am so sorry you are at this site, but it has been a sanity saver for me. I'm afraid I don't have any answers to your situation, but I would recommend a genetic test to see if you are carrying a gene mutation for HNPCC (hereditary non-polyposis colon cancer). The reason I say this is that HNPCC not only causes colon cancer, but endomtrial, bladder and kidney cancer, as well as some brain cancer. Since you have already had the kidney cancer and your rectal mass was so big, it makes me very suspicious that the kidney cancer was secondary and that the rectal cancer is the primary site. If you insurance covers it, it is worth it so that the rest of your family knows that they might be carrying the gene, too. If the gene is present, colonoscopies should start at age 25. Also, if it is HNPCC, you may want to have a hysterectomy at the same time you have your resection done. My gynecological oncologist says that it is getting to be standard to do the hysterectomy at the same time if you are carrying the gene, since you have very high odds of also getting endometrial cancer.

I hope you are not, and that this is the last time you will have to deal with it. I know there are others on this board who have been in your situation, so they can help you better with the treatment questions.

Lots of hugs, and God Bless!

Kirsten

nudgie

kmygil said:

Hi Debbie,
I am so sorry you are at this site, but it has been a sanity saver for me. I'm afraid I don't have any answers to your situation, but I would recommend a genetic test to see if you are carrying a gene mutation for HNPCC (hereditary non-polyposis colon cancer). The reason I say this is that HNPCC not only causes colon cancer, but endomtrial, bladder and kidney cancer, as well as some brain cancer. Since you have already had the kidney cancer and your rectal mass was so big, it makes me very suspicious that the kidney cancer was secondary and that the rectal cancer is the primary site. If you insurance covers it, it is worth it so that the rest of your family knows that they might be carrying the gene, too. If the gene is present, colonoscopies should start at age 25. Also, if it is HNPCC, you may want to have a hysterectomy at the same time you have your resection done. My gynecological oncologist says that it is getting to be standard to do the hysterectomy at the same time if you are carrying the gene, since you have very high odds of also getting endometrial cancer.

I hope you are not, and that this is the last time you will have to deal with it. I know there are others on this board who have been in your situation, so they can help you better with the treatment questions.

Lots of hugs, and God Bless!

Kirsten

I agree with kmygil on getting the genetic test done. It is better to be safe than sorry now-a-days.

Welcome to the best damn site on the internet. Your family here will provide information, support and help throughout your new path on life and yes, listen to you always.

I cannot provide answers to your line of treatment as I was DX with colon cancer, but did have my tumor genetically tested because of my age (43).

Don't evey hesitate to get a second, third, fourth opinion if you are NOT happy with the one you already have.

Keep us updated

funnyguy

Hey, it sounds like you are getting good treatment. If you are concerned about what might be right for you, I used a resource on the website for the National Cancer Institute. They have a treatment tree that allows you to interact with your specific criteria. It's mimics what most oncologists use to make their decisions. It helped me to understand the options because it's very explicit in naming drugs and related treatment options.

shmurciakova

funnyguy said:

Hey, it sounds like you are getting good treatment. If you are concerned about what might be right for you, I used a resource on the website for the National Cancer Institute. They have a treatment tree that allows you to interact with your specific criteria. It's mimics what most oncologists use to make their decisions. It helped me to understand the options because it's very explicit in naming drugs and related treatment options.

Great info! As for Debbie, I also didn't have rectal cancer (mine was in the Sigmoid colon) but it sounds like other cases I've read about before. Usually they shrink the tumor with rads then they do surgery followed probably by more chemo. I would certainly ask your doctors about the HNPCC gene too, since you had the kidney cancer. I wonder if it all did start in the rectum. Interesting....
Anyway, there is HOPE in case we forgot to mention it! There are many, many survivors on this board who have lived beyond Stage III and IV(like me!). So ask away, and don't forget to make a list of questions for your doctors so when you go in you don't forget anything.
Good luck and keep on posting!
Susan H.

Kaye2003

My husband was dx Oct 03 with rectal cancer. His treatment was xeloda and radiation. He was told he would have a permanent colostomy also. His last test showed he is still cancer free and he was able to avoid the colostomy because of the shrinkage of the tumor.
You will be in my prayers.
God bless,
Kaye

dn220

Thank you all for the responses. I had a hysterectomy several years ago. My radiation doc said I need to be tested genetically since i am only 46. But I am on medicaid so I dont know if that will pay for it or not. My kidney cancer came back as RCC but I still dont understand all this. They said I have 2 seperate cancers for sure and that I would most likely have more during my lifetime. Thats what my rad doc said anyway. they also said trhat I have a mass in my gallbladder that is most likely cancer but the doctor said that is the least of my worries and that he will be removing that when he does the surgery. There is a mass in my liver as weel but they think that is just a hemotoma, i also have a nodule on each of my adrenal glands but they dont think they are cancerous. I am really sweating all this out and hoping that I am doing the right thing by leaving it all in my doctors hands. I have decided that if they are all cancerous then it is in the Lords hands but I do worry about my daughter. I am all she has and she is only 16 so I worry about hanging around til shes grown at least but I do have another question for you all. They told me I would probably have problems with bowels from the radiation and chemo but until this past weekend I have had nothing "new" but now I have what I think is a fissure. Any suggestions for that? I have an appt tomorrow with chemo doc so I will ask her but I think that is what it is, as it is so awfully painful. I have tried prep H but that hasnt helped at all. Is this normal? thanks, Deb

Kaye2003

My husband was dx Oct 03 with rectal cancer. His treatment was xeloda and radiation. He was told he would have a permanent colostomy also. His last test showed he is still cancer free and he was able to avoid the colostomy because of the shrinkage of the tumor.
You will be in my prayers.
God bless,
Kaye

KierstenRx

Debbie,
Welcome to the board. I lurked for a month or two also before posting. This board was a Godsend during my treatment and beyond. I had a stage III rectal tumor diagnosed 9/18/06. I did the 28 treatments of radiation and IV 5FU (works like Xeloda, but in IV form) to shrink the tumor. I had a large low lying rectal tumor. The radiation and chemo did the trick. I had a bowel resection last February. I also ended up with a permanent colostomy. Those of us on this board that has them seem to adjusted fine. I had a wonderful ostomy nurse that I saw before surgery. I went into surgery refusing to have my life dictated by crap. The colostomy is really no big deal. It's hard to believe it has almost been a year. I have been NED since my first check up in September. After surgery I also did more chemo consisting of FOLFOX and Avastin for 8 treatments. Wasn't a whole lot of fun, but I still managed to work almost full time. Did have some lingering side effects I am still dealing with 6 months after finishing chemo. I am so glad to hear you have gotten your insurance approved. I can only imagine how stressful that has been for you.

I also agree with the others about genetic testing. I have not done the testing because insurance will not pay for it. I may do it in the future. My rectal cancer showed up at age 32 and therefore they seem to think it could be genetic based on some other reproductive cancers that are on my father's side.

Don't hesitate to ask me any questions. Everyone here is full of really great info. I'll keep you in my thoughts.

Kiersten

NWGirl

dn220 said:

Thank you all for the responses. I had a hysterectomy several years ago. My radiation doc said I need to be tested genetically since i am only 46. But I am on medicaid so I dont know if that will pay for it or not. My kidney cancer came back as RCC but I still dont understand all this. They said I have 2 seperate cancers for sure and that I would most likely have more during my lifetime. Thats what my rad doc said anyway. they also said trhat I have a mass in my gallbladder that is most likely cancer but the doctor said that is the least of my worries and that he will be removing that when he does the surgery. There is a mass in my liver as weel but they think that is just a hemotoma, i also have a nodule on each of my adrenal glands but they dont think they are cancerous. I am really sweating all this out and hoping that I am doing the right thing by leaving it all in my doctors hands. I have decided that if they are all cancerous then it is in the Lords hands but I do worry about my daughter. I am all she has and she is only 16 so I worry about hanging around til shes grown at least but I do have another question for you all. They told me I would probably have problems with bowels from the radiation and chemo but until this past weekend I have had nothing "new" but now I have what I think is a fissure. Any suggestions for that? I have an appt tomorrow with chemo doc so I will ask her but I think that is what it is, as it is so awfully painful. I have tried prep H but that hasnt helped at all. Is this normal? thanks, Deb

I can't address the anal fissure myself, but I think there is a post on it in some of the older (but not to old) postings that I read. You might want to go through some of the older posts to see if you can find it and if there is any helpful information.

On a separate note, I just want to say how sorry I am that you are going through all this. I have two small children and I know how you feel about wanting to see them grown! My prayers are with you and your family for a positive outcome to all that you are dealing with.

redlady23

Hi Debbie...I too am sorry that you have to be here but there are a lot of very helpful people here. I also mostly lurk and read but have asked a few questions and gotten great info. I am a 43 year old who was dx in August of 2007. I took xeloda and had 28 radiation treatments followed by surgery to remove the tumor as well as a full hysterectomy. I had to undergo a second surgery 3 weeks later for a temporary ileostomy as I developed an anal/vaginal fistula. 4 weeks post surgery finds me in a much better state and getting adjusted to my bag and all that goes along with it. I will undergo 6 months of IV Folfax as my adjuvent so it sounds very familiar to what you are going through. Good luck and God Bless with everything. Shelley

dolphinsfly

Ok..This is gonna be a long response.
I am a 43 y.o. female. I was diagnosed at the age of 42, 10/23/07, with Stage 3 Colorectal cancer. After 5 weeks of hemhawing around the Dr's got busy with a treatment plan. Needless to say after many hours of struggling through, CT Scans, CT Simulations, Colonoscopies and multiples bolld draws, they came up with a plan. However, the Radiation Dr I had was too far away from my home and the Social Worker suggested I change Radiation Dr's as it would be easier on me later on in treatment. I figured the treatment plan would reamin the same and guess what? Nope!! She wanted to change EVERYTHING!!!!!
That meant more CTScans, More Blood draws, and more CT Simulations (that is the hardest part for me)She didn't agree with the radiation treatment plan nor the Chemo plan. So, she changed it all. She said for Colorectal cancer the best way to treat in radiation is in the prone postion(laying on tummy) and that Xeloda is not a good way to treat Colorectal cancer as it hasn't shown any significant inprovements over 5 F-U. So, 7 weeks after the diagnosis, I was scheduled to begin treatment. Small glich came up 2 days before treatment was to start. My cancer decided to make a new home in my liver. So, now I am upgraded to a Stage 4 and my Dr said words like...not cureative, 1 year to live, maybe 2 on pallitave care....I tuned her out and bawled.
She said we are going to go ahead and treat the way we had planned. However, she is still believeing those ugly words she told me on 12/14/07...Pallative care..Bite me!! Not for me.
I'm a fighter and I plan on fighting this and winning.
Currently. I am on week 5 of 6 1/2 of both radiation and 5 F-U continuous infusion 24 hrs a day.
I have been doing pretty good until last week. At week 4 I really began noticing how cumulative this stuff really is!!
I am sick to my stomach everyday. I feel so terrible. But, I have really good stuff to take that works.
The radiation effects aren't as bad as I was warned they might be. They are bad but not un bearable. I have the broken down skin and any thoughts of sex? HaHa...Not happen here for a very long time!! LOL
My dilema now is finding a Dr that wants to do further treatment. As it stands now, treatment is over on 1-29-08. By the way...The liver Mets is on the left lobe only and there are 4 lesions ranging from 6-10MM in size. I have been told it is resectionable.
So, I will not give up hope.
I have a 3 children a daughter 24, a son 21 and a daughter 10. Also, a granddaughter 3 1/2, a grandson 1 1/2 and one on the way in July. I'm not going anywhere willingly...I will fight kicking and screaming.
Please you do the same.
I am seeing my Dr tomorrow and requesting a referral to both Stanford and MD Anderson.
Say your prayers.
God Bless you.....

dn220

dolphinsfly said:

Ok..This is gonna be a long response.
I am a 43 y.o. female. I was diagnosed at the age of 42, 10/23/07, with Stage 3 Colorectal cancer. After 5 weeks of hemhawing around the Dr's got busy with a treatment plan. Needless to say after many hours of struggling through, CT Scans, CT Simulations, Colonoscopies and multiples bolld draws, they came up with a plan. However, the Radiation Dr I had was too far away from my home and the Social Worker suggested I change Radiation Dr's as it would be easier on me later on in treatment. I figured the treatment plan would reamin the same and guess what? Nope!! She wanted to change EVERYTHING!!!!!
That meant more CTScans, More Blood draws, and more CT Simulations (that is the hardest part for me)She didn't agree with the radiation treatment plan nor the Chemo plan. So, she changed it all. She said for Colorectal cancer the best way to treat in radiation is in the prone postion(laying on tummy) and that Xeloda is not a good way to treat Colorectal cancer as it hasn't shown any significant inprovements over 5 F-U. So, 7 weeks after the diagnosis, I was scheduled to begin treatment. Small glich came up 2 days before treatment was to start. My cancer decided to make a new home in my liver. So, now I am upgraded to a Stage 4 and my Dr said words like...not cureative, 1 year to live, maybe 2 on pallitave care....I tuned her out and bawled.
She said we are going to go ahead and treat the way we had planned. However, she is still believeing those ugly words she told me on 12/14/07...Pallative care..Bite me!! Not for me.
I'm a fighter and I plan on fighting this and winning.
Currently. I am on week 5 of 6 1/2 of both radiation and 5 F-U continuous infusion 24 hrs a day.
I have been doing pretty good until last week. At week 4 I really began noticing how cumulative this stuff really is!!
I am sick to my stomach everyday. I feel so terrible. But, I have really good stuff to take that works.
The radiation effects aren't as bad as I was warned they might be. They are bad but not un bearable. I have the broken down skin and any thoughts of sex? HaHa...Not happen here for a very long time!! LOL
My dilema now is finding a Dr that wants to do further treatment. As it stands now, treatment is over on 1-29-08. By the way...The liver Mets is on the left lobe only and there are 4 lesions ranging from 6-10MM in size. I have been told it is resectionable.
So, I will not give up hope.
I have a 3 children a daughter 24, a son 21 and a daughter 10. Also, a granddaughter 3 1/2, a grandson 1 1/2 and one on the way in July. I'm not going anywhere willingly...I will fight kicking and screaming.
Please you do the same.
I am seeing my Dr tomorrow and requesting a referral to both Stanford and MD Anderson.
Say your prayers.
God Bless you.....

Dolphins, sounds like u have gotten the same runaround that I have been getting. My problem after all that has happened to me lately, I find myself not trusting my docs. My sister lives in fl which is 900 miles from me but she is my POA. She also manages a dr office and is very good friends with the docs she works for, of course she has been working for them for about 10 years now, anyway, her docs think i have gotten some horrible care in this . I dont think my current docs are "bad", but I do think because I do not have the best insurance that i am not getting the right thing done. The docs that found my kidney cancer found it and some other problems which they never have said anything about and the only reason I found out about them is because I GOT SOME OF MY RECORDS, BUT WHEN THEY FOUND MY KIDNEY CANCER IN jAN THEY DIDNT TELL ME TIL i GOT SICK IN mAY. So I have a big problem trusting doctors now. All i know is I want to hang around to make sure my daughter grows up and gets her education and of course i would really like to stick around to see my grandchildren as well. My son is in Iraq, and his wife and him are planning to start their family as soon as this deployment is over and I want to at least be feeling better by the time he gets home. I wish he could be home for my surgery but I dont know if that is feasible. Anyway, I'm ranting now, thanks for the encouragement and comments and I will be hoping for everyone on here as well to beat this ugly monster.
Debbie