Colon Cancer Coming back with a tumor and liver spots

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Colon Cancer Coming back with a tumor and liver spots

by pukalania on Tue Jul 31, 2012 08:17 PM

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Hi everyone!

My husband, 36 years old was diagnosed with colon cancer stage 3 (gone to the lymph nods) in 2010 and had a tumor removed, colostomy for few months during chemo (12 treatments) and reconnecting surgery, all was completed Jan 2011, as of yesterday July 2012 his oncologist advised that his cancer has come back, with a new tumor an inch away from the old spot, and also the CT scan shows 4-5 spots in the liver. Not sure if its from colon cancer or a new cancer yet. I was just wondering if anyone has gone though a similar experience and also looking for an oncologist / cancer center recommendation for colon and liver treatment anywhere in the country. Thanks so much in advance

RE: Colon Cancer Coming back with a tumor and liver spots

by jcare on Fri Aug 03, 2012 04:24 AM

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Hi there, so sorry about your husband. My husband was also stage 3 colon cancer/2 lymphs involved in August of 2010. He had 6 months of chemo/colostomy/ colostomy takedown. Even when we started chemo his PET Scan was clear but the cancer popped up in Mets to the liver in Jan 2012. He has been on Avastin/Camptosar/5fu and Luecorvin (now every 2 weeks). The results have been amazing. I am not sure where you live but City of Hope in Southern California is great. Or Dr. Malik at Inland Hemotology-Oncology at St. Bernardine Hospital in San Bernardino is wonderful. I hope this helps. Please write back if I can help further.

RE: Colon Cancer Coming back with a tumor and liver spots

by beemidwife on Sat Aug 04, 2012 07:51 PM

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This is so horrifying for me to read as I am in the beginning of this myself. I was also diagnosed with stage 3 colon cancer, 3B because 4-5 lymph nodes were involved. My tumor was at the very beginning or the colon, at the cecum, by the appendix and they still removed most of my colon. She said before the surgery she would "try to leave me 18" out of the 5' colon." She wanted to do this because she didn't want the cancer to come back and because she suspected I had Lynch Syndrome which would make it more likely to come back. I am responding to you because I find it interesting that the new tumor came back "an inch away from the old spot". Surely they took out a good bit of the surrounding colon as well? and this is just near the incision spot?

Also, I learned recently that when a metastases occurs it (in this case) would be a colon cancer cell that has attached and is growing somewhere else. So he has colon cancer in his liver: where colon cancer usually goes. My friend that died of a brain tumor with untreated breast cancer, according to this way of thinking, died of breast cancer in her brain.

As for treatment, I joined this group trying to find someone else who is doing this but haven't yet. But I am going to the Burzynski Clinic for treatment. My reason is that they do very extensive testing on the tumor and select the medication that is a genetic match for that particular tumor, rather than just the standard chemotherapy for that type of cancer. I think we all just make the best choices we can with the information we have and have to hope we made the right decision. I am trying to back up the medication with green smoothies and lots of juicing. I am only 3 months after surgery and so have no idea what the future holds.

Best wishes for your husband!

RE: Colon Cancer Coming back with a tumor and liver spots

by wandalein on Fri Aug 17, 2012 03:58 PM

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My husband was also diagnoised with stage 3 (one lymph node out of 16 removed).  He had his surgery just at the end of March a week after the diagnoisis and we are now approaching 5 months and he is about to have his temporary illostomy reversed.  I am terrified because he had opted for no chemotherapy and his surgeon has supported this decsion by monitoring him.  He has been on a strict supplement regime and looks healtheir than he has in 10 years (he is just 50).  We live in Canada and we have access to an all natural plant based substance called Oncolyn and it seems to have worked in people that we know personally.  I understand and your story shows that chemo is not always the answer either.  I have done a lot of reading and it seems that if you get to 1 year free of reoccurence you can breathe a bit easier but it is not till you get to 3 years post op that your chances although not entirely zero are close enough to mean that you made a home run.  I have had to learn to to live in the moment because I was so scared my mind would run away with me.  It was hard at first but now I am finding it has its rewards.  

RE: Colon Cancer Coming back with a tumor and liver spots

by pukalania on Sun Aug 19, 2012 01:26 AM

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On Aug 03, 2012 4:24 AM jcare wrote:

Hi there, so sorry about your husband. My husband was also stage 3 colon cancer/2 lymphs involved in August of 2010. He had 6 months of chemo/colostomy/ colostomy takedown. Even when we started chemo his PET Scan was clear but the cancer popped up in Mets to the liver in Jan 2012. He has been on Avastin/Camptosar/5fu and Luecorvin (now every 2 weeks). The results have been amazing. I am not sure where you live but City of Hope in Southern California is great. Or Dr. Malik at Inland Hemotology-Oncology at St. Bernardine Hospital in San Bernardino is wonderful. I hope this helps. Please write back if I can help further.

Thank you so much for your reply icare! Sorry it took awhile to respond! We decided to go to Seattle's Fred Hutchinson or SCCA (Seattle Cancer Center Alliance) because we have family here. It's been just a week and so far we are happy with the clinic and doctors. My husband started avastin/irinotecan/xeloda, where the avastin and irinotecan are infused every 3 weeks and he takes the xeloda pills twice a day for 2 weeks and then one week off. After 3 rounds of this they will make scans and see where things are going. If this doesn't work maybe will try the mix you guys havem they said this is kinda the standard for them here. Good luck and keep in touch when you can maybe we can compare notes :)

RE: Colon Cancer Coming back with a tumor and liver spots

by pukalania on Sun Aug 19, 2012 01:37 AM

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On Aug 04, 2012 7:51 PM beemidwife wrote:

This is so horrifying for me to read as I am in the beginning of this myself. I was also diagnosed with stage 3 colon cancer, 3B because 4-5 lymph nodes were involved. My tumor was at the very beginning or the colon, at the cecum, by the appendix and they still removed most of my colon. She said before the surgery she would "try to leave me 18" out of the 5' colon." She wanted to do this because she didn't want the cancer to come back and because she suspected I had Lynch Syndrome which would make it more likely to come back. I am responding to you because I find it interesting that the new tumor came back "an inch away from the old spot". Surely they took out a good bit of the surrounding colon as well? and this is just near the incision spot?

Also, I learned recently that when a metastases occurs it (in this case) would be a colon cancer cell that has attached and is growing somewhere else. So he has colon cancer in his liver: where colon cancer usually goes. My friend that died of a brain tumor with untreated breast cancer, according to this way of thinking, died of breast cancer in her brain.

As for treatment, I joined this group trying to find someone else who is doing this but haven't yet. But I am going to the Burzynski Clinic for treatment. My reason is that they do very extensive testing on the tumor and select the medication that is a genetic match for that particular tumor, rather than just the standard chemotherapy for that type of cancer. I think we all just make the best choices we can with the information we have and have to hope we made the right decision. I am trying to back up the medication with green smoothies and lots of juicing. I am only 3 months after surgery and so have no idea what the future holds.

Best wishes for your husband!

Hello Beemidwife! Thanks for your message! To answer your question: they took out 32cm of the colon around the tumor area, not sure what's the standard, but the new surgeon we are seeing at UW says that she may need to remove a large portion of the colon and we may end up with a permanent colostomy..and to tell you honestly that horrifies us a bit more than the cancer itself since we experienced it temporarily. These days it sounds like there are so many more options for colon cancer treatment and there is much more hope.

Yes they also confirmed the cancer in liver is colon cancer but initially they were not sure if it's a new cancer as well..i don't know which is better...The Burzynski clinic sounds very promising, very out of the box approach, i haven't seen anyone who has gone there but sounds like a good match since possibly Lynch syndrome! I'd say get as many opinions as you can..and maybe meanwhile start treatment not to delay things and when stabilize try different treaments/doctors if not working. Initially we were thinking of going to MD Anderson, since ranked number 1 and heard so many good things about it...but with no family around and the financial burden of renting a place/car etc we couldn't do it so ended up in Seattle Cancer Care Alliance..with Dr Lin who came from MD Anderson. Here they also do some genetic testing to seek origination and prescribe your treatment but maybe not as extensive as the B clinic. If you look up Dr Edward Lin at SCCA he has also found the positive effects of celebrex in combo with the chemo...so just another option out there.

Don't be discouraged and try to take this one day at a time, you seem to be ahead of the game with all the research you are doing! Everyone's story is different and maybe you'll be done with all of this in 6 months and come visit us in Hawaii for a nice vacation :)

RE: Colon Cancer Coming back with a tumor and liver spots

by pukalania on Sun Aug 19, 2012 01:43 AM

Quote | Reply

On Aug 17, 2012 3:58 PM wandalein wrote:

My husband was also diagnoised with stage 3 (one lymph node out of 16 removed).  He had his surgery just at the end of March a week after the diagnoisis and we are now approaching 5 months and he is about to have his temporary illostomy reversed.  I am terrified because he had opted for no chemotherapy and his surgeon has supported this decsion by monitoring him.  He has been on a strict supplement regime and looks healtheir than he has in 10 years (he is just 50).  We live in Canada and we have access to an all natural plant based substance called Oncolyn and it seems to have worked in people that we know personally.  I understand and your story shows that chemo is not always the answer either.  I have done a lot of reading and it seems that if you get to 1 year free of reoccurence you can breathe a bit easier but it is not till you get to 3 years post op that your chances although not entirely zero are close enough to mean that you made a home run.  I have had to learn to to live in the moment because I was so scared my mind would run away with me.  It was hard at first but now I am finding it has its rewards.  

Hello Wandalein,

I agree with you chemo not alsways works..defintely not in our case..we are however going for a different chemo mix since the cancer came back quite aggressive...i think as long as you do frequent check ups you should be ok..our initial oncologist was just doing CEA count, which never detected the almost obstructing tumor in colon and mets in liver..so i'd say go the extra steps..get CT/PET scans etc..My husband is in the best shape of his life too..he is 36 never smoked, drank, he exercises every day and eats healthy..he said this is a strange feeling because he feels great and yet all this is happening. Thank you for the substance i'll check it out :) You can try to take this a day at a time...which is so hard because you have to somewhat plan...since this is our second round of the battle..things somehow are  abit tougher but also we know we did it once and we can do it again Good luck to you guys and keep in  touch!

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