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Rectal cancer i think

Re: Rectal cancer i think

Posted by Cynthia Mac on Jan 19, 2019 9:50 am

jaacck‍ , I am sorry to hear about your diagnosis. I hope the cancer team is able to guide you through the next steps of the process. I’m sure they will have information that will help you be able to make the right decision for you.

Have you had a chance to review the link to chemotherapy that ACH2015‍ gave you?

Re: Rectal cancer i think

Posted by jaacck on Jan 20, 2019 7:52 am

I been reading about the chemo posts Andy sent me, Thanks ? everyone. Curible and treatable? I don’t mind which one I’m leaning towards yet, I’ll see what  this team is up to, 
 

Re: Rectal cancer i think

Posted by ABeaz03 on Jan 21, 2019 8:28 am

I think Stage 4 means that it has spread to distant organs, like the liver or lungs.  If it has gone through the wall and to the lymph nodes, that would be stage 3.  I would ask further why they are not recommending surgery.  They can remove the entire rectum and lymph nodes.  That is what they did for my husband, and he was diagnosed with stage 3 rectal cancer.  He does not have a colostomy bag now either.  They somewhat "rebuilt" a bit of a storage space (called a j-pouch) from his colon so that he can go back to passing his bowels.  While the bowels are somewhat unpredictable now, he says it is better than having the bag (he had a temporary ileostomy after surgery, then had it reversed).  What cancer center are you being treated at?

Re: Rectal cancer i think

Posted by jaacck on Jan 22, 2019 12:26 am

Rectal cancer Andy, and it’s what the doctor says, it’s stage 4? I understand stage 4 is when it spreads to other organs, idk why he says stage 4, and operation will do nothing, chemo the rest of my life he said, so yes, I’m waiting impatiently for this cancer team to call, there’s people in worst shape then me that got operations, some have got pieces of eye lungs or liver removed, it’s very strange he said I may live for 22 months tops, I’m not giveing up Andy, everything is coming from my Doctor, I’m just saying what he is telling me, he said, a hole in my rectum wall and it’s in lympnodes outside the wall, they gotta do something I say, I can hardly pass anything now, lucky I’m taking laxatives to make my stool watery, what do you think Andy? Is it time I look for a second opinion? If this cancer team takes the Doctors advice and gives me chemo? What’s the use taking chemo if it’s just gonna make me suffer more? Or what do you think, help everyone, I need advice 

Re: Rectal cancer i think

Posted by ACH2015 on Jan 22, 2019 7:29 am

jaacck‍ 

I'm sorry that the situation you are in has not been made clear to you by the doctor. You are right to say stage Stage 4 cancer has spread to other organs, and it also means in your case outside the rectum wall into the lymph nodes. 

From what you say in your post, it sounds like the cancer may have spread too far for surgery to be effective. That is why it sounds like chemotherapy is the option being offered.

You are certainly allowed to seek a second opinion Jack. Especially if it will help you understand your situation better, and hopefully offer you more options. You need to understand why you are being offered specific treatments and why others are not options for you. You may also be able to participate in any clinical trials available to you. You have to ask and advise your cancer team that you are willing to participate - if you are willing to do so. Clinical trials are experimental treatments that have shown promise in treating cancers, and are being put into limited use to determine effectiveness. Understand there are risks involved and there is no guarantee they will work. 

Who do you have with you for help? Family members, friends? I am concerned with the length of time that has gone by with your situation. If I am right, the doctor you refer to is the family doctor? It sounds like you have not met an oncologist yet, is this correct?

When do you have the consult with the cancer team Jack? Please let us know what you find out from the cancer team, and I sincerely hope you get better information than you have been given to date.

Understanding your situation and getting greater information will help you decide how you want to move forward Jack. Chemotherapy can be offered for curative purposes, and like any treatment, it can be offered to give a person as much time as possible. 

ACH2015 - Andy.







 

Re: Rectal cancer i think

Posted by Lacey_adminCCS on Jan 22, 2019 10:38 am

jaacck‍ 

I'm sorry to hear about all you are going through. Like Andy said you have a right to ask for a second opinion. 

Have you tried calling our Cancer Information Service at 1-888-939-3333 to speak to an Information Specialist and get some support to discuss navigating the health system and getting answers? I think you will find it really helpful.

Keep us posted,
Lacey

Re: Rectal cancer i think

Posted by jaacck on Jan 22, 2019 10:05 pm

hi, Andy, this cancer team is going to call me for an appointment with them, I have a brand new family doctor, here where I live, he just talks to me , sort of like you and I, im getting my information from a doctor who is in the big city, 6 hour drive south of where I live, I’m not sure what a oncologist is? This doctor I been dealing with does the colonoscopys on me, and the one who tells me everything, he also talks with a team about my situation, I’m not going to look for a second opinion, but, I will talk to the cancer team I meet about a clinical trial, thanks Andy, I’m 55, I have lots of family support, my wife comes with me on every appointment and asks all kinds of questions, this doctor said chemo the rest of my life, this is where I get lost again, in my situation I been in pain for at least 5 years, ya they gave me Tylenol 3s most times because all my past doctors said it was always something different, like, a little arthritis one doctor told me, another doctors pretty much said I’m getting old, I asked for a MRI for a few years, I definitely wanted a CT scan because we have that machine right at our hometown hospital, but the answer was always no, take these pills like, gabbypenton or extra strength Tylenol, I took every NSAID that was invented, made me feel horrible, so the Doctors just figured I was after opioids, I documented every doctor visit I had over the last five years, if I can’t fight cancer then mabe I’ll fight all my old useless lying doctors, they sure left me in a mess,ya , I know nothing about chemo also, mabe you can help me out, sure I got this tumour in my rectum, it’s horrible to use the washroom, but it’s been there for at least 3years, I figure, mabe if we don’t bother it I can live with it for many years to come, as long as I have pain meds, and I do take 9 mgs hydromorphone now, 3 times a day, it definitely helps, mabe I’m talking for nothing but if chemo is gonna cause me nothing but pain to prolong my life by a couple months mabe I’m better off with out it, idk, what do you think chemo will do to me ? I never heard anything about it other then I’ll loose my hair, I know there’s a cancer phone line I can call but I’m no good talking on a phone plus I’ll forget my next question while I’m listening to the answer, anyhow, let me know what you think about my whole situation Andy, don’t hold back, I need advice, answers, etc , looking forward to your reply, or anyone’s reply’s, who ever wants to jump in , Thanks.      Jack

Re: Rectal cancer i think

Posted by jaacck on Jan 22, 2019 10:08 pm

hi Lacy, I left Andy a long letter, have a read and get back to me with what you think, greatly appreciated.       Jack

Re: Rectal cancer i think

Posted by ACH2015 on Jan 29, 2019 2:26 pm

Hi jaacck‍ 

I'm back after being away for a few days.

First off - an Oncologist is a doctor that specializes in treating cancer. To name a few, there are Medical (they deal in treatments like chemo or immunotherapy), Radiation, and Surgical Oncologists.

I'm happy to hear you have a new family doctor Jack, and it seems to be working out well. The doctor (gastroenterologist) that conducts the colonoscopies for you is doing so at the request of the medical team working with you. All the information is shared with the team to look at your situation and make the best decisions for your treatment plan.

If you feel comfortable with your family doctor, he or she has all your information and can assist you with any questions about the treatment plan. This way it helps you focus on making decisions in moving forward. Do you have video conferences with the medical team in the city? Sometimes these can be arranged with your local hospital to set up camera so you can see and hear the medical team in the city - and they can see and hear you. It can save you time and energy in travel if its just for to ask questions and no physical exam is required.

These can be scheduled by your family doctor to coordinate with your local hospital and your medical team in the city, It can help you get information about any possible immunotherapy or other treatments as well Jack.

I too had some pretty serious difficulties in my diagnosis and treatments. All I can say to you Jack is to move forward for yourself and put your energies into your treatment path and let go as best you can of the past.

Each of us will react differently to chemotherapy Jack. Yes - I lost my hair, and its a common side effect many of us face.

Chemotherapy is designed to kill, slow down and hopefully stop the progression of cancer cells. Cancerous tumors are made up of cancer cells. The process can also cause us side effects like losing our hair, nausea, vomiting, fatigue and many others. The good news is that we can take medications to help reduce the nausea, increase our appetite, and reduce our pain Jack. Each of us will react differently and what affected me may not bother you at all or as much. We will all be different and need to adjust our treatments and medications to get us through as best we can as individuals Jack.

I hope this information helps you Jack. The more information you have, the easier it will be to choose the treatment path ahead for you.

Keep well Jack. I will keep an eye out for your next post.

 
Miigwetch

Andy




 

Re: Rectal cancer i think

Posted by jaacck on Jan 29, 2019 8:58 pm

it definitely helps Andy, thanks, I am in Winnipeg right now and met 2 doctors, next week there gonna start chemo/radiation, for 5 weeks, that’s good news, there gonna hit it aggressively and hopefully they can operate to remove this rectal tumour, I’m feeling happy now, at least we’re going to get the ball moveing forward, I’ll fight this , I’m strong, I know it’s going to be nothing like I ever been threw but bring it on, I’ll keep use posted, thanks Andy, ekosi ,       Jack 

Re: Rectal cancer i think

Posted by ACH2015 on Jan 30, 2019 7:14 am

Hi jaacck‍ 

It's very good to hear you today. You sound positive, confident and happy with the direction of the ball moving forward.

I send you strength and positive thoughts Jack. Know that the treatments will affect you and your whole being while attacking the cancer. It is part of the process, that can test our strength and faith. Understanding this can help us get through the treatments in body and spirit..

Please keep in touch with us here when you are able.

êkosi ani Jack.

Keep well

ACH2015 - Andy.

 

Re: Rectal cancer i think

Posted by Cynthia Mac on Jan 30, 2019 8:29 am

Hi, jaacck‍ ,  I’ve quietly been reading about your situation, and wanted to chime in and wish you well with your treatments. You’ve had a long road of the frustrating “waiting and wondering” phase, so it must feel good to finally have an action plan. I join with Andy ACH2015‍ in sending you strength and positive thoughts.

Re: Rectal cancer i think

Posted by jaacck on Feb 1, 2019 8:07 pm

Thank you Cynthia,?

Re: Rectal cancer i think

Posted by ACH2015 on Feb 11, 2019 9:29 am

Hi jaacck‍ 

I wanted to stop by and let you know we are thinking about you.

Last we heard, you were getting ready to start chemo / radiation.

Let us know how you are doing when you get a chance Jack.

Keep well

Andy.

Re: Rectal cancer i think

Posted by jaacck on Feb 12, 2019 10:42 pm

Hi everyone, change of plans on me again, they decided to only do chemo on me, no radiation treatments, they held me back another week, I do meet this chemo doctor on Friday, I got lots of questions for her? I’ll get back to use. Jack

Re: Rectal cancer i think

Posted by ACH2015 on Feb 13, 2019 6:55 am

Hi jaacck‍ 

Thank you for updating us.

Our treatment plans can change many times right up to being put into effect.

It's good to know you have questions prepared for the meeting. Keep in touch with us here to let us know how you are doing and what you learn from the meeting.

Keep well

ACH2015 - Andy.

Re: Rectal cancer i think

Posted by ACH2015 on Feb 15, 2019 9:06 am

jaacck‍ 

Good morning Jack,

All the best to you today in your meeting with the oncologist (chemo doctor).

Get in touch with us to share your updates.

Keep well

ACH2015 - Andy.

Re: Rectal cancer i think

Posted by jaacck on Feb 15, 2019 1:39 pm

Finally starting chemo next week, hi everyone, thinks have changed so many times I can’t give a long term plan, but here is the short plan with a future goal, they just put a stent in my arm, they will start chemo next week ( I hope) the doctor said we’ll monitor the chemo , if everything works out, the chemo works, they may do radiation then a operation or operation then radiation, there is one lymph node that can’t be done with surgery, they hope the treatments will take care of this one, this tumour is huge, takes u the whole rectum, , what are the chances that chemo will not work? Does it happen often?

Re: Rectal cancer i think

Posted by ACH2015 on Feb 15, 2019 2:02 pm

Hi there jaacck‍ 

I like what you said, you have "a short term plan with a future goal".

My suggestion to you Jack - concentrate on the present. Chemo will hopefully attack the cancer, shrink and kill the tumors and get you to Radiation and Surgery or visa verse. Did you get the name of the type of cancer and the name of the drugs you are being given for chemo? There are many different types.

Many of us here have said this here before: We are all different, our cancers are different and we will all have different levels of success with treatment outcomes.

How many rounds of chemo are scheduled? In my case, I did 3 rounds, then had a CT scan to check the results. Then I did 3 more rounds of chemo for a total of 6. That got me to surgery, then after I healed from that I had radiation.

I want to mention that chemo was not meant to be my only treatment. Chemo was not expected to kill the cancer on its own. It was meant to stop it spreading, kill and shrink the tumors that were already there for the next steps in my treatment plan.

Your plan sounds similar. Positive thoughts to you Jack.

One step at a time.

ACH2015 - Andy.







 

Re: Rectal cancer i think

Posted by jaacck on Feb 15, 2019 8:00 pm

This is tuff to figure out Andy ACH2015‍ , but I’ll right down what it says,. Fluorouracil, Leucovorin and oxaliplstin are given directly into the vein ( IV) then additional dose of Fluorouracil over 2 days from a thing about the size of a baby bottle, I will do this treatment plan then wait 14 days and do it again, hows that, is it making a little since to use ? Thanks Jack

Re: Rectal cancer i think

Posted by ACH2015 on Feb 16, 2019 7:53 am

Hi jaacck‍ 

Thank you for letting us know the treatment plan and the chemo drugs involved.

Each combination of drugs is designed to treat the specific cancer, and is given at specific time frames.

The reason there is a break in the cycles is to allow for our bodies to recover before the next cycle begins.

The oncologist (chemo doctor) will do tests after a certain number of cycles to see how the drugs are working. This too is a normal part of the process we all go through.

One thing that I noted during my chemo treatments was that the tumor pain decreased. That is a good indicator that the chemo drugs are working, because the tumor is shrinking and dying. That also helps us reduce the level of pain medications we need to manage our pain.

Take care Jack and let us know when the treatment is set to start for you.

ACH2015 - Andy.

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