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rectal cancer
D33
13 Posts
Hi, My name is Debbie and I am interested in speaking through this blog with someone who has been through or going through rectal cancer and where to go after the diagnosis as far as getting radiation and chemo. Looking for guidance and/or other forms like holistic wise. remedies that may be less evasive. I am his caregiver and have been for 25 yrs on 6/28 this year whereby he sustained a TBI(traumatic brain injury) and now have this cancer scare on top of it. Hope someone out there can be helpful/advocate.
19 Replies
Brighty
6765 Posts
@D3 hi!!!!I'm going to pass your post to Whitelilies‍ who will be able to help you. Welcome!!!!
Boby1511
454 Posts
@D3
Can't seem to tag you.
Hi there,
I have a tumor (recurrence) in the rectum. I had radiation to the area. And chemo (but that was earlier).
Radiation was manageable. There are side effects, but doesn't mean he will get them all.
Hydration is important. Don't know of any holistic remedies.
Your choices of treatment are going to depend on stage/type of cancer with your oncologist.
I am currently doing fine.
Sending you both best wishes. Any questions feel free to reach out.
Whitelilies
1073 Posts

@D3

Hello Debbie and welcome! I too am struggling to “tag/reach” you….I hope you will see this.

I am sorry to hear of your husband's diagnosis…….you have come to a very caring community…..we understand.

Lots to share; I am from Ontario too; I was treated at Sunnybrook Hospital, for my Radiation portion of my treatment. You wrote you were concerned about this, and chemo too; very understandable…..please follow what the Dr/Oncologist wish for your husband…they have the experience, knowledge and skills to rid of the rectal cancer. He may not need either? He may need surgery? It is not yet staged, as you did not share/know this info yet. It all will depend (treatment) on many factors….where exactly is tumour? how large? is it on the move?

The MRI gives Dr lots of info; also the CT scan, and bloodwork(CEA marker).

Let the medical team tell you, next steps…we are here to support you.

You mentioned “holistic approach”…..perhaps look for a Naturopath Dr (oncology trained) to help your husband “in addition” to the Oncology Dept where your husband attends, at the hospital. I was at NYGH for part 2 of my treatment: Surgery.

If possible…..look at: www.CCRAN.org

Reach Filomena or Frank P. They are a wealth of knowledge, patience, skills, contacts and more…..the site can help with meds, side effects…support group 1 Sunday aft per month….Filomena KNOWS her stuff; trust me…..she held my hand many a time; also in Ontario…..toll free number on contact page of www.CCRAN.org

I will not overwhelm……please keep sharing….we are here to support you, and your husband.

Regards

Whitelilies

Whitelilies
1073 Posts
@D3
Hello Debbie, yet again....
At this time....I will assume, you await hearing what "next steps" will be.
Perhaps, "now" is a good time.....for your husband to reduce red meats; dairy products, processed foods.....increase water, fruits, veggies, grains....
I too had my first ever colonoscopy, and the Dr found a 3cm tumour "downtown"....yup....right there and then....a whirlwind occurred...lots of appts....tests.....and finally treatment plan. It will all come together. (I too had the mini-scope....I believe it is called Flexible Sigmoidoscopy).
I would like to introduce you to: RBIONHollieSammie59‍ Thank you so much ladies....if you could share your caregiving experiences, with our new member, for her husband, as well.....Ontario too! Much appreciated....

Debbie....we are supporting you and your husband.

Regards
Whitelilies
D33
13 Posts
Hi Brighty:
Thank you for sending this message. I do see Whitelilies has responded 😉
D33
13 Posts
Hi Boby1511:
Thanks for the post. I am currently awaiting a call from the cancer centre at Met Hospital here in Windsor to review choices of treatment. For whatever reason the endoscopy Dr. says can't give the 'stage' until surgery...I have my doubts on that answer since I thought or was told that is what the MRI would allude us to,,,,guess not. Thank you for the well wishes and glad you are doing fine now.
D33
13 Posts
Hello Whitelilies:
I am seeing your post, and thank you. Happy to hear you'll are a caring community. Thanks for sharing. This is all new to us. I know you say to follow "Dr's orders" but always question whether a 2nd opinion is recommended. It is already suggested that he should start radiation and chemo treatments but we have yet to sit with the oncologist to discuss options and which way to go. We were told the MRI would give us the "stage" but today informed he doesn't know until surgery,,,,a little misleading. Tumour is in the rectum as determined by the two colonoscopy procedures done. I'm not exactly sure on the size or whether it is on the move. Through the CT scan they also found lesions on the lungs and liver, the Dr. not seeming too concerned with that at this time. He's had bloodwork 2ce with two biopsies from both colonoscopy procedures plus the CT and MRI and we are awaiting the results from 2nd biopsy. We'll have to ask on Naturopath when we speak to oncology. I'm not sure what NYGH is? Thanks for the website info, I'll look into that as well.Thanks for understanding and hope to speak again.
D33
13 Posts
Hello:
Always open ears for next steps and this group seems to be very helpful and caring so far.
Oddly enough when he was first diagnosed diet was one of the first things I looked into because it seems regardless of what he eats it seems to go right through him and what comes out(frequently I might add) is not formed, but very loose(sorry for the graphic description). He does spend a fair amount of time rushing to the washroom sometimes having "accidents". But we are working on a whole new meal plan at this time and whence we get a call from the cancer clinic will asked to have a dietician give their 2 cents and set up some type of program. I have been pumping the fruits, veggies and starting to learn more about grains. You are correct on the 2nd mini name. Thanks for RBION Hollie Sammie59 hoping to share with them as well and get their feedback. Again thanks for the support. I will also mention why this is hurtful to myself and esp my daughter(who lives in London) is my husband sustained a TBI(traumatic brain injury) 25 yrs ago at the end of this month and his comprehension of many things aside from this that he refers to as "Confirmed I have the BIG 'C' " is questionable. I've had to write down what is going on and ask him to read my letter periodically so he understands better. Whether he would be able to make a decision of a plan going forward,,,,again questionable. So you see I've been his caregiver for a VERY LONG TIME...and yes my shoulders are very large, lol...but this is much more that I can/wish to handle with out input from outside sources going forward. Sorry that is a lot of info but keeping it real.
Whitelilies
1073 Posts
D33‍ Hello Debbie....Thank you for sharing and letting us know....how things "were".....being a caregiver for 25 years is difficult, to say the least.....I do hope you can take a bit of time, to breathe out...a mini walk outdoors.....sip iced lemonade on the porch....just simply "you" time....if possible.
I too will not get "graphic", but I totally understand the "Frequency/Urgency" washroom issues.....it just comes with the territory ! sheesh.....I have "same" that you described of your husband. I too went to the Dietician at Oncology Centre, and she has helped me immensely. To aid with "forming".....try Metamucil; Orange and NEW Berry flavour....I was advised to take a small spoonful/with water before each meal. It was a miracle worker.....Perhaps try this (for "forming")
Re-Staging....at times Drs dont know "exactly" the stage, even with the MRI results, etc. There may be cases, where the Dr must "see", during the surgery, what is happening....This is a "Pivot" moment....not all answers come from the reports.....
I have learned that it is "common" for the rectal cancer to move to liver/lungs....common to get 2 MRIs as well (1 colon 1 liver).....
Sharing: I was told Stage 2- Early 3. My plan was Radiation first; to try to shrink the 3cm tumour.....Then surgery to give surgeon better chance to get it out. (smaller)
Every person/patient handles treatment in their own way....there may be common side effects....it will all depend on what meds/IF any he needs....
Regarding Sife Effects: this is another opportunity where a Naturopath Dr can "help lessen" the side effects of treatment. There are holistic measures to help make things tolerable. Of Course; one must tell the Oncologist, if you see a Naturopath; to ensure nothing is taken, to offset any meds, etc.....Keep Communication Open!

I am sorry to hear of the TMI.....oh my goodness.....I do hope he is able to best understand, to the best of his ability, with you, by his side...

You mentioned 2nd opinion earlier.....Filomena may be able to help with that......she has contacts all over Canada! She Rocks It !
By the way....NYGH stands for North York General Hospital. Sorry, for the acronym.....

Please feel supported.....we are all here to listen and share and more.

I believe there is a Support Group/Virtual Sunday June 27th, 1pm, via Filomena....many people join in....and share experiences etc.....you may wish to check it out.

Warmest Regards
Whitelilies

ps ask anything; nothing makes me blush! Boy, do I have poop jokes ! please chuckle
IamJay
93 Posts
Hi Whitelilies
You mentioned an online support group and added a link but it didn't work for me. What does 'ccran' stand for?
I wonder if this would be a good support for me even though I'm not colorectal cancer I am still finding bowel issues following pelvic radiation for vaginal cancer to be a challenge and wonder if I'd learn some different ways of managing these issues from the folks in that group?
thanks for being such a good support here!
Judy
Whitelilies
1073 Posts
IamJay‍ Hi Judy....Sorry for the acronyms.....hope this helps:

Colorectal Cancer Resource and Action Network CCRAN .


I just emailed Filomena, and await her response, if she thinks her support group would be of benefit to you......fingers crossed.....access to Support Group, is not shown on website.....everyone must "reach/connect" with Filomena.....then get your access to Zoom....she also simply wants to get to know, each and every one of us, who reach out to her .....she helps a lot of folks......
Regards
Whitelilies
Whitelilies
1073 Posts
IamJay‍ Hi Judy......Hats off to Filomena; she JUST responded to my email......YES she would be so happy, to have you join the support group.
She respectfully, asked, if you could reach her after June 17th; because she is hosting a Canada Wide Symposium, on June 17th......(am shocked she responded to email so quickly)....her contact info, is on the "contact page" of www.CCRAN.org
Perhaps, let her sleep in on the 18th (lol).
Jot down date of Support Group: Sunday June 27th, 1pm - 5pm
They are generally 1 Sunday afternoon, per month, via Zoom. Sometimes, she gets an Oncologist to join the zoom call.
Wishing you the best....
Whitelilies
Narges
32 Posts
Hi D33‍ , sorry to hear your story and I admire your patience and strength. I have stage 4 rectum cancer too and I just finished radiation and waiting for re staging results to plan for the next step. As whitelilies told you , ccran is great.I was devastating before port procedure and they were most helpful.
wish you best with your journey and feel free to ask anything
Whitelilies
1073 Posts
Narges‍ Hello.......how are you doing?for sure you are happy, that radiation is over.....(I was too).....I knew the radiation technician/staff by first name!
When you know.....I hope you can share....what the next step will be. We are here, for support.
Filomena, is just....a breath of fresh air......I too just registered for the Symposium.
Regards
Whitelilies
IamJay
93 Posts
Thanks so much Whitelilies
I will give her some time to recover before checking in with her!
Judy
RBION
18 Posts
Welcome D33‍ You've found a terrific group here!

My husband was diagnosed 9 months ago with mets to his liver and has since gone through a variety of surgeries and chemo treatments. Very early in this process, a friend gave him a list of alternative approaches and he spent time researching them before talking to his doctor. Out of the list of 4 or 5, only one warranted speaking to his oncologist as the others didn’t have enough data to support them. The dr reviewed it and advised him not to try the alternative as it would interfere with the planned chemo he would soon be starting. He had no regrets with the decision and appreciated that his oncologist was open to talking things through with him. Whatever options you might find, as Whitelilies‍ said, make sure you guys talk to your medical team first.

So years of being a caregiver eh? You must have found ways to ensure self-care and find supports to save yourself from burnout - that's a lot of responsibility and stress to carry...and now this. Self-care is such an important part of being able to look after your loved one. I often see posts on this site where tips are provided to newcomers – I bet you’d be an excellent resource for self-care tips given all the responsibilities you’ve carried - if you care to share sometime. We're glad to have you in the community.


Rbion
D33
13 Posts
Hi:
Sorry I didn't reply earlier, I have spoken to a dietician (CMHS)just today who's main concern(prior to speaking to a dietician at the hospital or question to radiation, chemo oncologists---who will not do so UNTIL we are deemed a patient---so I guess in a two week period as that is what they say is the turnaround time frame)is the diarrhea issue...to avoid any(current)accidents from happening so often. We went thru a meal plan to provide him with the calories best to have some weight gain as he has lost so much...basically he is skin and bones down to 147 lbs from around 178 lbs a year and a half or so ago.(he weighs less than I do....not by too much as I'm working on me for my well being lol) I am catching up with all the responses that have come thru as of recent....so much info, so many to take in...God give me strength.😅
D33
13 Posts
Hi Rbion:
Thanks for reaching out. This is only the beginning of our journey. We will once a two week period goes by speak to the radiation and chemo oncologists to get the best guidance. I am a little disappointed that the doctor that did the colonoscopy (2 of them)told us that the MRI would let us know the stage of cancer, then once the report was in changed his answer to "we'd have to see through surgery", conflicting answers when we are already not ready for this. It has been a trying 25 years through my husband having sustained a TBI and having been his sole caregiver all that time. We have been to hell and back a number of times. I have always been an "on the go" kinda of girl, always involved with something...local festivals, work related events(prior to having retired almost one year ago 6/19) as well as Church events for years. Never sat still for long and kept my sanity by staying involved with many outside projects. I currently after starting an exercise challenge with my daughter in Jan this year am still doing daily workouts to strengthen me in body and sole. Gotta keep me healthy on my own cause no one will do it for me right!!! To date I have not burned out,,,,which amazes me or that I didn't turn to drugs or alcohol as a vice to get through my days. And I do have MY days, maybe blow a fuse, release frustration in some way. Then I say enough!!!! I have a great group of ladies from my Church that are a good support for me plus two very close "amigo" girlfriends I can reach out to and reply on a lending ear. This process would be an entirely different situation if my husband comprehended what is going on....the brain injury has played havoc in our lives in more ways than I can count as in his eyes he keeps a journal and only enters "I've been diagnosed with the BIG C" but doesn't fully understand what this means going forward. Hoping and praying going onward and trying to keep a positive attitude. Thanks for listening.
D33
13 Posts
Hi Narges:
Thanks for the kind words and hope your journey comes to a close and great outcome and great suggestion re: ccran
Patience and strength come from a long period of dealing with another issue with my husband from 25 years ago. I have been told I have big shoulders. I believe I will go to heaven when it's my time because of what this life has dealt me....but I strive to say positive and go day by day...Good luck
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