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Stage 3B diagnosed: That's it?

Stage 3B diagnosed: That's it?

Posted by yow613 on Apr 30, 2019 8:40 pm

Just met my oncologist for the first time for my stage 3B colon cancer. I had the tumour removed earlier this month so she practically said I am without cancer but chemo was necessary as a preventative measure to kill any traces of remaining cancer and reduce the rate of recurrence drastically (6 months on FOLFOX via a port).

Has your oncologist said the same thing with your diagnostic? Seems like she's downplaying it a lot as in I'm cured but doing chemo just to be sure. 

Is it just me?   How about you, what is your story?

Re: Stage 3B diagnosed: That's it?

Posted by Whitelilies on May 1, 2019 4:43 pm

Hi yow613‍ 
Please trust your oncologist.......glad surgery went well.
Sharing my story.....I had stage 2/3 Colon Cancer.....with a 3 cm tumour VERY LOW in colon....bad location I was told!
I too had surgery to remove it.....dr removed 17 lymph nodes......
I did have radiation FIRST OFF, to shrink tumour......nodes came back all clear. Did not have chemo ( I DANCED !!)
I had an Ostomy Bag for 4 months....I was told this was needed, so the "ends" of severed colon, "can heal".  They did. I am grateful.
Surgery then removed bag, and now the diarhhea begins!!  Please laugh.  My new mantra: Diarrhea beats Cancer.
If I can further be of support....please reach me.
Warmly,
Lillian

Re: Stage 3B diagnosed: That's it?

Posted by yow613 on May 1, 2019 7:43 pm

I think diarrhea h is not a bad thing, it flushes out all of the toxins.  You just need to stay well hydrated.  If it gets excessive though, definitively consult.

How long have you been disease free?

Re: Stage 3B diagnosed: That's it?

Posted by Whitelilies on May 2, 2019 1:25 pm

Hi yow613
Disease free.....last surgery was Jan 2019......I guess since then.....I NEVER really feel "free"......I am in the 5 year survivorship program.......more FUN occurs May 2019 with ANOTHER colonoscopy, by my Surgical Oncologist.  I just take things one day at a time.
And am currently awaiting results from my Genetic Testing.
They said up to 3 months to wait....I am in week 8 
URGH

Wishing you well,

Warmly
Lillian

Re: Stage 3B diagnosed: That's it?

Posted by yow613 on May 2, 2019 3:55 pm

I think what they should say is I am in remission and then disease free if no trace after 5 years.
 

Re: Stage 3B diagnosed: That's it?

Posted by Cynthia Mac on May 3, 2019 8:12 am

Hang in there, Lillian! Whitelilies‍ ! You’re 2/3 of the way to those results.

If it helps, my Mom used to refer to her colonoscopy as her “big nap.” (She had a section of bowel removed due to pre-cancerous cells found in her colonoscopy, so she was on fairly frequent colonoscopies.)

Re: Stage 3B diagnosed: That's it?

Posted by Whitelilies on May 3, 2019 1:24 pm

Hi Cynthia Mac
I did chuckle......yes I too refer to colonoscopy as "weight loss cleanse".....some good comes OUT! lol
I will go as often as surgeon/oncologist says to.
From my DX day in July 2018.....to today....I have lost 22 pounds......
HEY: I had 22 pounds to loose!
If not at the gym......then HELLO TOILET!

Lillian

Re: Stage 3B diagnosed: That's it?

Posted by Babs1 on May 3, 2019 2:17 pm

Hi yow613‍ 
   My story is similar.  Colon cancer with oncologist indicating stage 2, but being treated as stage 3 due to my 10.5 cm tumour. Tumour surgically removed with 20+ clear lymph nodes.  Oncologist recommended the Capox protocol in an effort to eradicate any cancer that may have moved into blood stream.   Your treatment is to be Folfox which has similarities.  One of those is that 5FU, which is a component, is metabolised by the DPYD gene in your liver.  If the gene is abnormal, called DPD Deficiency, then the chemo does not work through your system and can build up to a toxic level very quickly.  If your oncologist has not discussed this with you, then I strongly suggest that you ask.  The deficiency often has no symptoms and is uncommon.  DPD tests are not a standard protocol in Canada, however, based on my research, some countries in Europe have changed that due to the # of deaths and the medical costs involved in dealing with the ramifications.    Various stats show it at 1 to 5% of population with the US at 2 to 8%.    I didn't become aware of it until I obtained a copy of my oncologists file where it was shown as a risk.  By then it was too late.  After two days of the cap treatment it was stopped due to the serious side effects.  Result is that the cancer is not being treated and my neurologist advises that my nerves are permanently damaged and that all that can be done is pain management.   I understand that the cost of the test is roughly $200, and if I had been aware, I have no doubt that I would have paid for the test as I have always had weird reactions to medications.    Wish you the best of luck!


Babs
       

Re: Stage 3B diagnosed: That's it?

Posted by Doingitforher on Aug 13, 2019 1:11 pm

My mom has stage 3, will start 5 weeks of radiation soon and everyone’s words are very inspiring to know that you are all on a great path to wellness! Thank you for the support everyone ❤️

Re: Stage 3B diagnosed: That's it?

Posted by Lianne_adminCCS on Aug 13, 2019 1:26 pm

Doingitforher‍ 

Welcome. I am glad that these posts are a source of inspiration for you. How are you doing? It can be tough to watch your loved one go through something like this. I have been both the diagnosed and the daughter of the diagnosed. Has your mom had any other treatment thus far or is radiation the first?

Lianne

Re: Stage 3B diagnosed: That's it?

Posted by Doingitforher on Aug 13, 2019 3:52 pm

Not yet, just went to the cancer clinic with her to meet the doctor and surgeon, I’m ok, I’m tryin to be as strong as I can in front of her, but when I’m on my own I have broken down acouple times, sometimes I read too much in the internet that makes me feel terrible, but I want to know everything about it before it happens, but then I hear stories like these and many people like you that make it look like a breeze and I hope it will be and I have confidence that she will fight through it all worth a breeze! 

Re: Stage 3B diagnosed: That's it?

Posted by Cynthia Mac on Aug 14, 2019 7:51 am

Doingitforher‍ , You’re doing great. 

It’s very natural to have to process all this stuff on our own time. When my dad’s lung cancer returned this month, I cried a lot, and there were some times I wasn’t on my own. I’ve finally reached a point where I can hold things together when I’m with Dad or the doctors, but it took a bit of doing.

If you’d come hear sooner, we would have warned you about the internet - it can make your “new scary place” a lot scarier. We often caution people about “Dr. Google.” 😉 

Many, many people have said this to me, and I’m going to pay it forward to you: Your mother (father in my case) is lucky to have you with her as she goes through this.

If you need any caregiver tips, just ask.

Re: Stage 3B diagnosed: That's it?

Posted by Doingitforher on Aug 14, 2019 1:24 pm

Cynthia thank you! It means a lot! And I tried to avoid dr.google for a while after finding out but I wanted more answers the doctors give very short info and I want to know what to process entails, the side effects etc! But now that I have you Guys I can ask everything I want! Thank you again for all your support! 

Re: Stage 3B diagnosed: That's it?

Posted by ACH2015 on Aug 14, 2019 4:47 pm

Doingitforher‍ 

Good up to date, and reliable information is in abundance on the internet. You just need to source it from reliable up to date( preferably Canadian or U.S.) sites. The reason I mention this is because the majority of us will seek conventional cancer therapies in Canada, and, perhaps the U.S.

For example, the Canadian Cancer Society is a wealth of  "Up to date and reliable Canadian" cancer information.

The link below is a publication from the CCS on Colorectal Cancer. It also contains resources to seek specific or further information.

http://www.cancer.ca/~/media/cancer.ca/CW/publications/Colorectal%20UYD/32066-1-NO.pdf

Treatments, side effects and overall results will vary from patient to patient. The key is understanding that each situation is unique and specific to the individual.

Don't be afraid to explore the CCS site yourself. It is well laid out, and easy to navigate.

I've attached the link below:

https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&cad=rja&uact=8&ved=2ahUKEwiW_MSdnIPkAhWQZs0KHeG0AzcQFjAAegQIBxAC&url=https%3A%2F%2Fwww.cancer.ca%2Fen%2F%3Fregion%3Don&usg=AOvVaw2uIpQGw7okrHVSZlZ7ZMx7

Also, don't be afraid to ask your mothers medical team to expand on their answers to your questions. When and where possible, obtain printed copies of tests / consults for reference. Some hospitals also have patient portals to get medical info via your email address. Cancer Hospitals within the UHN Network and Sunnybrook for example have this portal. Its free and helps keep everything at your fingertips.

ACH2015