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HI all, I'm new here

CanadianSister
Posts: 10
Joined: Sep 2009

Hi everyone.
I'm new here, been reading a lot of your posts and have found you all to be such a supportive group and full of really good information. I hope that you don't mind a Canadian in your midst, I'm a Canadian, and havent' found a lot of information on Canadian forums to help us.

Heres my story:
My 51 year old sister went in for a routine appendectomy in May 09 - 10 days later we find out its cancer. First appointment with her oncologist we're informed that he can't cure her, that he can only treat her. Wants to send her to a surgeon in Toronto Ontario. So we go, this doctor in TO seems wonderful, runs a bunch of tests and takes 5 weeks to call and tell her that theres nothing they can do for her.

We've been informed that she has mets to her peritaneal cavity and now her Liver but they can't find the point of origin. So I guess she has whats refered to as CUP.

They've not offered her any treatment to date, and frankly we're ticked.
We're currently waiting for a follow-up appointment in Toronto, for a speciallized CAT scan,

I'd like to go back to see this guy with an arsonal of information.

Thanks in advance for listening.

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

Here is a link to a discussion thread about the HIPEC treatment for peritoneal metastases: HIPEC discussion.

--Greg

CanadianSister
Posts: 10
Joined: Sep 2009

Originally the doc had discussed the idea of HIPEC, unfortunately it is not done in the province of Ontario. We were to be referred to Roswell Centre in Buffalo NY, but it appears that there is more liver involvement then previously thought.

Am I correct in believing that HIPEC is not done to patients with Liver involvement?

Its been determined that my sister only has the right lobe of her liver. The left has apparently died and shrivelled. The right has taken over totally, thereby not leaving much option for resection.

I"m so confused and well to be honest terrified for her.

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

I believe I have read that liver mets are treated before HIPEC is tried, but I hope that someone familiar with the HIPEC procedure will be able to answer your question. I don't know anything more.

--Greg

kmygil's picture
kmygil
Posts: 829
Joined: Feb 2007

I'm so sorry about your sister. The only thing I can suggest is to take her to a major cancer treatment place like M D Anderson in Texas. They tend to find hope where everyone else is naysaying. I don't know much about widespread metastasis, but surely they can do better for her than to tell her to give up. I'll be praying.

Hugs,
Kirsten

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Usually done if there is no liver involvement. I am surprised they would not start chemo. Keep pushing and getting other opinions.

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Sure, we like Canadians here! I married one (well, ok, he was born on this side of the border in Buffalo) but with two Canuk parents (Ontario and Manitoba).

Sorry about your sister.

Here's what she CAN do while she waits for doctors to figure this out.

1) STARVE THE CANCER: get off all refined foods, dairy and meats. NO junk. NO alcohol. NO whites--flour, sugar, grains etc. Nothing. Your oncologist won't tell you these things most likely.

2) alkalize your body with raw, organic fresh veggies. Cancer cannot live in an alkaline environment.

3) Start juicing fresh organic veggies to pump your system with LIVE ENZYMES that will heal diseased organs and alkalize your system.

4) GREEN = LIFE

5) Detox your system--cancer is a symptom of a deeper issue. Get rid of toxins, toxic people, emotions etc.

I hope this helps. It sure helped me. I was dx'ed with Stage III sigmoid colon cancer and post surgery to remove the tumor (lymph positive zero mets) I declined the adjuvant chemo and did all of the above (and much more) and have remained cancer free for eight years. I know what it's like to have a sister with stage IV cancer which was a HUGE reason why I didn't do the chemo.

peace, emily

CanadianSister
Posts: 10
Joined: Sep 2009

Thanks folks.

Its pretty tough waiting for someone to do something. Considering they told her on her first oncology appointment that in his early days in Ongology - he would have given her 6 months, we've been almost 5 with NO treatment.

She and I are with-holding the information from the rest of our family because of the changing direction that has taken place, thats another weight on both of our shoulders. She doesnt' want to freakout our parents, or her children, at least not until we get final word. She's never had a defined treatment plan, first it was Debulking, then it was the heated Chemo, then it was back to Debulking, now we've been left "swinging in the wind" The doctor here in our hometown tells us - Two people can't drive the same car! We get that, we really do, but if feels like this car's in PARK.

I'm so frustrated and confused. I try to stay strong for her but man its hard, sometime I just want to start calling these guys myself and rip them all a new one.

Thanks for listening to me rant. :)

trish07's picture
trish07
Posts: 141
Joined: Jul 2009

My husbands cancer started in his appendix, burst and spread throughout peritoneal cavity. You may have to travel some distance, but get to a cancer treatment center, no excuse for Drs. to hem ha around. 5 months makes it very apparent [ in my opinion ] they have no experience with this. My husband would not be here today if I had not taken him to Stanford university [teaching hospital with Advanced Medicine Center]. Local Drs. had given him a matter of days to live, told him to get his affairs in order and wanted to open him up. No Way...we moved on. At cancer center debulking surgery was done in a matter of 2 days...removed 7 lbs. of tumors, spleen,sections of intestines, e.t.c.. Heated chemo has only proved successful when caught early [ not an option for stg. 1v ]. After 3 surgeries- removal of bowel blockage & ileostomy,debulking, then reversal of ileostomy my husband has been treated with chemotherapy on a on going basis- there is no cure- but there is treatment to prolong life. Its been 2 years!

Of course, all cases are different with what else is involved in individuals, it just concerns me of the time that the Drs. have allowed to pass with nothing done. I would suggest moving on...like any other area of profession, not all physicians graduated at the top of their class. I wouldn't bother calling the current Drs., they will usually try to convince you that they know what they are doing...Just move on and don't look back.

Please Keep Us Posted....

Take Care, Trish

Janet3
Posts: 61
Joined: Aug 2009

Well, I am so sorry for what you are going through. Stay strong - your sis needs you now. That being said, you will need support, a place to cry and vent. This is a terrific spot to get support and vent if you are not able to find a group to get together with. My mom, 61 yrs old, was diagnosed Stage IV colon cancer. A very aggressive kind that had only spread into her peritoneal cavity. The docs here in San Antonio, TX said nothing they could do. They said she would live maybe 3 months. Hmmm. Not acceptable to her or us. We took her to M D Anderson in Houston, TX. I was glad to see an earlier response that also recommended them. They ran her through all the necessary tests, came up with some interesting information, and the oncologist there said if she followed their treatment plan he would fully expect her to live beyond the 6 year mark. Wow!!! What a difference. She is getting chemo here in San Antonio. We obviously found a much more supportive oncologist here in San Antonio who is coordinating with the one at M D Anderson. She has been through 3 rounds of chemo so far. After the 2nd round, she was having unusual abdominal pain. Dr said go to ER and get CT scan. Amazingly, it showed the tumors were already smaller! After only 2 rounds of chemo! Not that I think you care about our story BUT just wanted to show you that you have to keep looking until you find someone willing to help. You can go to M D Anderson's web site and email directly to the department and they will contact you about faxing any reports you have. Then a doc will look them over and you'll get a call with what they think is the best way to proceed. I know this is wordy. Sorry, I just really want you to keep exploring and find someone who is willing to try anything that may help your sister. You will remain in my thoughts and prayers.
Janet

CanadianSister
Posts: 10
Joined: Sep 2009

I'm trying to be as supportive as I can, as strong as I can for her. Its hard to keep the faith thats for sure.

According to our Oncologist here, we've been sent to the best that there is in Canada.He's apparently THE man. I'm not sure right now,I do know that when we first saw him, both my sister and I felt very reassured. The Oncologist here, well he has the bedside manner of a stump!

Being Canadian it makes it tough for us to seek treatment in the US. We've been told that our health plan will not cover us in the US unless we're referred to someone there. God knows I'd love to be able to just say - lets go to Texas, but that won't happen unless we're sent there.

GOOFYLADIE's picture
GOOFYLADIE
Posts: 235
Joined: Aug 2009

I am a stage IV Colon cancer survivor, 19 of the 32 lymph nodes were positive. The grapefruit sized mass was also positive. I was told by first oncologist that " I will give you chemo and radiation and make you as comfortable as possible". The second Dr. held my hand, shared his life about his family and got to know my family and told me " with everything I have in me, I am going to make you sick, very sick, I may even take you to deaths door but I am not going to let you pass through" It didn't sound egotistical or arrogant. He just held me as he was going to walk this walk with me, and he did; I did not have to have radiation, but I did do a year of chemotherapy. Yes, I was extremely sick at times, and my liver and kidneys shutdown. But its all over I am here and I have been free and clear of cancer for 11 years. I was 31 when dianosed. I am 43. Life is not perfect but life is good.You are here for a reason and you just keep posting the answers will come and you will get to the right place at the right time with persistance and knowledge. Make it a great day! Your doing great! Goofyladie (Cass)

CanadianSister
Posts: 10
Joined: Sep 2009

Your second doctor sounds like he was sent by god himself.
We had such high hopes when we first saw the Surgeon in Toronto, he was very much like that. Told us I'll get you the very best treatment, I'll take good care of you. But now we feel like being 7 hours away has put us to the back of the line.

She's calling today - AGAIN to see if they have managed to set up the required tests. Its been two weeks since they told her - within a week. Stress is getting to me, I can't imagine what its like for her.

I've told her that if she doesn't get somewhere PDQ that I'm going to start calling. I think maybe I got more of the Biotch gene then she did. :) Don't know if it will help or not but I feel like something has to change and maybe I need to be the one to force the issue a little.

GOOFYLADIE's picture
GOOFYLADIE
Posts: 235
Joined: Aug 2009

I know it is easier said than done. Somethings are out of our control however if you are tired of waiting you can get another doctor.I have seen sights and threads about places to stay for free while you are seeing cancer doctors, seeking other necessary treatment. This sight (right here) has so much to offer. But in my experience, I would worry for the results and wait over the weekend or week because insurance doesn't hurry for anything, unless the doctor steps up and bypasses the insurance.He would say "I'll deal with them if it comes to it." I was lucky my 2nd doctor stepped up and out many times. He chose life over what someone had to say on a piece of paper. Anyway, I would be exhausted with worry, because it just consumes you, and then when its time to fight, I would be already weak and tired from fighting the worry and wonder. Most doctors I found have no bedside manner, so I figured to have the morals that I wanted to lose sometimes; because of other doctors ignorance, I held close the the absolute. 1. I had cancer. 2. I had to have surgery. 3. There is options 4. Options may not be what you want however they are options to keep us moving forward. 5. In moving forward things change, as then so do our options. See where I am going with this.
There is always something somewhere. Don't waste time on what ifs, and if onlys save it for NOW WE ARE GONNA!! Make it a great day!
Goofyladie (Cass)

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Hi there CS

I live in Texas! You ever get down this way - and it is a ways - stop by and say Howdy. We're mighty friendly down here - always room for one more!

I got as far as Niagra Falls, so I touched Canada; it was magnificent.

Sorry for your health care constraints up there :(

I do hope that things go well for you both.

-Craig

CanadianSister
Posts: 10
Joined: Sep 2009

Hi

Well a bit of news since I was last here, my sister ended up with an appointment for a CAT scan - didnt' have much warning on it. Got the call at 5:00 pm on Tuesday night, we had to be 500 miles away by noon on Wednesday. It was a rush trip but we made it and her scan was done. We have to make the trip again on Sunday to meet with the Doctor on Monday morning. We'll be discussing the situation then.

I know its not going to be an easy trip. I'm writing my list, and preparing my questions and suggestions. Mostly I'm worried about what I should and shouldn't ask him. I usually try to stay quiet during her appointments, only reminding her questions she wanted to ask etc... However this time, she's told me to prepare my questions for him as well.
So here I sit. Trying to figure out what I need to ask him, what direction to take the discussion. What treatments I should be asking about etc....

GOOFYLADIE's picture
GOOFYLADIE
Posts: 235
Joined: Aug 2009

Hi, you just make that list a mile long if you need to. You are going to have that doctors attention so ask every and anything that has come to your mind. There is never a wrong question in anything, I don't care what it is for. Ignorance is what will hold us back. Asking questions whethor we think its appropriate at the time or not the doctor wil answer everything he has an answer for and if he has no answer for you he should be able to lead you in the right direction this is his job, taking care of patients and as much schooling as they go thru, I know alot they get from everyday life. New things have to be questioned all the time. Fill that notebook up. Yeah, I am so glad things are finally moving forward for you, hang onto the faith, it will carry you thru. Make it a Great Day!
Goofyladie (Cass)

CanadianSister
Posts: 10
Joined: Sep 2009

Well, we had our appointment with the Surgeon yesterday, and the news was not positive.

My sister has Un-resectable primary Cholangiocarcinoma extending into the Pancreas.
She also has Carcinomatosis with Peritoneal spread and Lung mets. Her CA19-9 is over 12,000. Yes over 12,000 not a typo.

They have determined that surgery is not an option for her.
She will be starting Chemo likely by weeks end. They are going to put her on GEM-OX.

Shes scared spitless of the Chemo side effects, doesn't know what to expect. I'm going to be by her side as I have since the beginning of this thing.
I'll be doing some more research with regards to the Chemo thing today - so I can be prepared to help.

maglets's picture
maglets
Posts: 2396
Joined: Jun 2006

Dearest Canadian Sister.....another Canadian sister here from Owen Sound Ont. I am so profoundly sorry to hear your news.

I have been treated with surgery and chemo both in London Ontario and Owen Sound....3 times on chemo so may I please offer any help that I can give you. Please feel free to PM me and I could give you my phone number.

What a gift that your sister has you to share the burden of this.

all my very best love and wishes

mags PS I just finished a 6 month course of oxalyplatin in June

judithpepin
Posts: 2
Joined: Jan 2010

I've been reading as many posts as possible and came across yours this morning. My 47 year-old brother was also diagnosed with inoperable cholangiocarcinoma and has had 2 cycle of gem/ox thus far. If you could, please respond and let me know how everything is going. Thank you. Judi

yukonxlgirl
Posts: 1
Joined: Jul 2010

I really would like an update on your mother! We are going thru the same thing. We also go to MD Anderson. How are things going? Thanks Jodi

sunshine41
Posts: 2
Joined: Oct 2011

Hi, im being treated in Toronto at PMH and Mount Sinai...try to get a referal to see Dr. Andrea McCart, she's been caring for me and I will be doing the Hipec surgery in March 2013.

I was diagnoised Oct 21,2011 initially with ovarian cancer, i had two large tumors on both of my ovaries which were about 22cm by the time they were removed as well as my appendix, fallopian tubes, ovaries and 10cm of my smal bowel....i dont have a confirmed primary but it relates to my appendix.

My cells are mucinous adenocarcinoma, I had chemo from May to Dec 2012, I had a combo of 12 rounds of 5FU ( folfox ) with 8 rounds of oxaliplatin.

Im considered a stage 4

If i can help in any way let me know

sunshine41
Posts: 2
Joined: Oct 2011

Hi, im being treated in Toronto at PMH and Mount Sinai...try to get a referal to see Dr. Andrea McCart, she's been caring for me and I will be doing the Hipec surgery in March 2013.

I was diagnoised Oct 21,2011 initially with ovarian cancer, i had two large tumors on both of my ovaries which were about 22cm by the time they were removed as well as my appendix, fallopian tubes, ovaries and 10cm of my smal bowel....i dont have a confirmed primary but it relates to my appendix.

My cells are mucinous adenocarcinoma, I had chemo from May to Dec 2012, I had a combo of 12 rounds of 5FU ( folfox ) with 8 rounds of oxaliplatin.

Im considered a stage 4

If i can help in any way let me know

PatchAdams
Posts: 272
Joined: Nov 2011

You might search and see if the op is still around, but you've pulled up a very old thread

renw's picture
renw
Posts: 282
Joined: Jan 2013

All the intersting treatments seem to happen in Germany. This is a relatively new one. Its in german, but if u run it through google translation, good enuff to get the gist of the pocedure. Basically chemo aersol is injected into the abdominal cavity. 

http://www.ndr.de/ratgeber/gesundheit/krebs/druckchemo101.html

Ren

 

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