The Colon Club

Hello from Hong Kong. I am not sure if I should talk here coz most of the cases here are from the US, but this is the best colon cancer forum that I can find...

It is my mum who got rectal cancer. She was discomfort in one Sunday's night back in April, then we took her to hospital for checking. The doc examined and said he felt something very close to her anus which properly wont be a good thing. She was admitted to hospital that night and the next day it is confirmed that she got rectal cancer with colonoscopy, and later biopsy.

At first the doc said the tumor is rely small so properly in its early stage. Pet scan is clean. However, it is then discovered two lymph nodes were infected. It is said that one is close to the colon and the other one is located between the pelvis and thigh. The doc told us this is stage 4 but we choose to ask for one more medical advice and this time the other doc said it is stage 3 coz the one between the pelvis and thigh is not rely a "infected" node but due to scanning compassed the image of the body. He also suggested that though the tumor is very close to anus, he is able to prevent permanent colostomy. We believed him as this doc is more experienced and he did minimally invasive surgery for my mum in late May.

The tumor cut was not in its early stage. T4N1M0, my mum is in her stage 3. The tumor is spreading to the vagina so part of it has been cut. 2 out of 8 nodes are infected. Again, the lymph between pelvis and thigh has not been cut. And she is now having a temporary colostomy.

My mum has finished the surgery and started to take her chemo. She refused to have radio and we respected her decision. She took xeloda for 8 chemo, 8 pills each day. We are happy to see that she does not have serious side effect. Actually she almost have no side effect except finger skins color darken and finer hurt with 2 times of vomit.

HOWEVER, what rely concern us is that the CEA of her did not drop back to the normal level. After the surgery, her CEA is 7.3. After the 2 rounds of xeloda chemo, her CEA raised to 8.0.

OH GOD!! We are rely so worried about her. She does not look like a cancer patient actually, but something's wrong with her. The doc wanted her to do a CT scan again. Rely hoping the reason is the uselessness of the med instead of spreading of cells.
Does anyone here has similar experience? I know it may not be useful to anything before the CT scan shows anything specific, but it is rely a great relief to find out we are not alone. Thanks again.

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Took my mum's ct scan report today. It's lung met on both sides. She is too young and we don't want to lose her.
We rely need a miracle so bad...

There are people here from Europe and Canada as well so welcome to the board and I don't think that geography will be a problem.

Sorry about your mom having to deal with this.

Did your mother have genetic testing and/or ImmunoHistoChemistry done on the tumor? These tests may determine that other treatments might work better than the traditional 5 FU. In the US, I think that IHC testing is common. Genetic testing isn't always done unless there's an expectation that they find something that may help.

I'm almost halfway through Xeloda/Radiation and am getting bloodwork today and hoping for the best. It's scary stuff and I'm sure that your mom feels it and that you feel it as well.

Thank you very much for your reply. We hv booked ct scan on Mon morning. Hopefully it is clean.

It is not common for genetic test in hk unless one is in their final stage with no more suitable chemo. Instead, lots of people turn to Chinese medicine after chemo and radio coz it's not invasive.

My mum's CEA did not go down to normal level after surgery which makes us wonder if the surgery did take out all the infected areas or not...

I hope for the best of results from the CT Scan.

My CEA was 0 I think at diagnosis. I hope it's still there but I'm worried that it isn't. All of this is scary stuff as you know.

I really have not read up on what CEA is but it's apparently the level of cancer potential in the bloodstream which is why it's a point of worry.

My oncologist didn't order a genetic screening as the ImmunoHistoChemistry indicated low odds of an MSI-High result. That can indicate Lynch's Syndrome which can respond quite well to Keytruda. There are several people on this forum that have reported good results with this new drug. Unfortunately rectal cancer hasn't seen the drug pipeline with breakthrough stuff that's seen in some other kinds of cancer which may be inoperable. One of my coworkers was diagnosed with lung cancer last year and took time off. He had genetic testing done and they gave him a drug that shrank the tumor and he returned to work. There was a mutation and the tumor started growing again so they tested that and gave him another drug that takes care of both genetic variants. It has reduced the tumor so that he isn't in a lot of discomfort but it generates fluid that has to be drained regularly. Basically the drug will keep him alive and quite functional until a cure can be found.

A local hospital offered to do the testing for me so I signed the consent for them to request the remainder of the biopsy. I'm expecting results either this week or next week. I do not think it likely that it will change my course of treatment though, mainly because the IHC was negative and there aren't a lot of other miracle drugs for CRC. For them, though, it gets added to their genomic cancer database which could be useful for future research and drug discovery.

We have the debate on Eastern vs Western medicine in my household from time to time. My wife argues for Eastern while my son and I argue for Western. We don't rule out Eastern that has some kind of experimental basis though. Lots of folks at work also talk about eastern medicine (lots of Asians where I work).

CEA is a problematic marker for a number of reasons. When in active treatment CEA may rise because it's picking up cancer cells being killed. In other words, sometimes an increased CEA is evidence the chemo is working.

I rely hope there are cures for cancer. Didn't know about IHC testing before joining this forum.
Wish you all the best for your blood test Mike.

Google also tells me it is possible for CEA to raise at first in chemo, then lower again. However, my mum's CEA only dropped from 9.0 to 7.3 after 2 months of surgery. Base on this data, it seems not so positive...

Plus mu mum took concentrated Agaricus officinalis juice from June till the day before. We are not sure if this is the reason of her raising CEA. Agaricus officinalis has been promoted for the function of easing side effects and killing cancer cells. That's why we go for it and it is actually not uncommon among patients in Hong Kong.

We have asked her to stop drinking after knowing CEA increased. Doctor asked us to take her for CT scan without any comforting words. Finger crossed.

Mercy110 wrote:I rely hope there are cures for cancer. Didn't know about IHC testing before joining this forum.
Wish you all the best for your blood test Mike.

Google also tells me it is possible for CEA to raise at first in chemo, then lower again. However, my mum's CEA only dropped from 9.0 to 7.3 after 2 months of surgery. Base on this data, it seems not so positive...

I asked an oncologist about the Colorectal Cancer vaccine trial underway and he said that I wouldn't qualify for it. I think that you have to be stage 4 to qualify. The vaccine is custom-made for each person depending on their genetic makeup and takes a few months to make. Some of the science going on promising great things for the future. If we can afford it that is.

You are right. It properly take years for the new med coming from US to HK. For a grassroot family like mine in Hk which even do not have insurance, it is sure that there is no way for us to afford new drugs...

I also find that most of the stage3 patients in this forum are using at least 2 kinds of drugs for chemo while my mum only use xeloda. She is now on her third cycle and no side effect shows up. She even did all the housework without feeling tired. V worried.

Hi Mercy,

I am in Hong Kong. I had a sigmoid tumour, so I did not have to have a colostomy. I understand your worries and concerns. Have you heard of the Hong Kong Cancer Fund? They offer many services for Cancer patients, survivors and families. They can often help with your question and connect you with a survivor with similar experiences.

They do genetic testing in Hong Kong at the Queen Mary Hospital. Depending on your mother's age, she may qualify for free testing. She could ask her oncologist if this scheme is still available and if she qualifies.

I understand that you are worried. Please feel free to send me a private message and we can chat.

Best regards,

SWS

Sunwaterandsky wrote:Hi Mercy,

I am in Hong Kong. I had a sigmoid tumour, so I did not have to have a colostomy. I understand your worries and concerns. Have you heard of the Hong Kong Cancer Fund? They offer many services for Cancer patients, survivors and families. They can often help with your question and connect you with a survivor with similar experiences.

They do genetic testing in Hong Kong at the Queen Mary Hospital. Depending on your mother's age, she may qualify for free testing. She could ask her oncologist if this scheme is still available and if she qualifies.

I understand that you are worried. Please feel free to send me a private message and we can chat.

Best regards,

SWS

It seems that I am not allowed to send private message becoz I join this forum yesterday...
My mum is in her mid-50s. I thought genetic testing is usually for stage 4 patients in HK. We have heard of cancer fund but my mum prefers stay at home for the inconvenience of stoma. Other family members have to work so never join any activities or gps as well. Our church has a cancer cell group and they did help us a lot. Now just hoping the xeloda works...

From what you have written it looks like your mum is either Stage III-C or Stage IV, depending on the status of the remote lymph node near the thigh.

• If that lymph node turns out to be non/cancerous, then your mum's staging would probably be:
  T4b N1a M0 = Stage III-C, which is the highest risk Stage III and is curable with the right treatment.
  .
• If the remote lymph node is cancerous, however, then your mum 's staging would probably be:
  T4b N1a M1a = Stage IVa

You can read about the colon cancer TNM staging system here:

https://www.cancer.org/cancer/colon-rectal-cancer/detection-diagnosis-staging/staged.html

There are a number of Stage III-C patients on this forum who have finished their treatments and are in remission now in their followup period.

For Stage IVa with remote lymph node involvement there are also some members here. They call themselves Olymphians since their only metastases are in the lymph nodes. You can find some of the Olymphians here by usIng the search function with keyword OLYMPHIAN*
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57870&p=455850#p455850

I'm so sorry for your mother's diagnosis and I'm glad she's doing well with her chemo. I'm from Canada. My CEA has always been below 1 even before surgery. I get CEA and CA 125(another marker) checked every 3 months. CEA can rise for other reasons besides cancer. I hope your mother has a good scan!

JJH wrote:From what you have written it looks like your mum is either Stage III-C or Stage IV, depending on the status of the remote lymph node near the thigh.

• If that lymph node turns out to be non/cancerous, then your mum's staging would probably be:
  T4b N1a M0 = Stage III-C, which is the highest risk Stage III and is curable with the right treatment.
  .
• If the remote lymph node is cancerous, however, then your mum 's staging would probably be:
  T4b N1a M1a = Stage IVa

You can read about the colon cancer TNM staging system here:

https://www.cancer.org/cancer/colon-rectal-cancer/detection-diagnosis-staging/staged.html

There are a number of Stage III-C patients on this forum who have finished their treatments and are in remission now in their followup period.

For Stage IVa with remote lymph node involvement there are also some members here. They call themselves Olymphians since their only metastases are in the lymph nodes. You can find some of the Olymphians here by usIng the search function with keyword OLYMPHIAN*
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=57870&p=455850#p455850

It all depends on the scan right now. Apart from these stages, we are worried about the expenditure of using targeted therapy. We are not wealthy and this properly have to consume 1/4 income for us every month.
Rely hoping for the best.

DarknessEmbraced wrote:I'm so sorry for your mother's diagnosis and I'm glad she's doing well with her chemo. I'm from Canada. My CEA has always been below 1 even before surgery. I get CEA and CA 125(another marker) checked every 3 months. CEA can rise for other reasons besides cancer. I hope your mother has a good scan!

Thank you. That's what we are hoping now. Wish you all the best as well.