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Finally received my diagnosis
Mamabear41
35 Posts
After waiting which has felt like an eternity I finally have a diagnosis I have been diagnosed with stage 2/3 rectal cancer, the plan is 5 1/2 weeks of chemo radiation then we wait a month and re scan if cancer isn’t gone then surgery will be booked for a permanent colostomy due to how low the Tumor is and the fact that it has grown into my anal spchinter.
26 Replies
Whitelilies
1073 Posts
Mamabear41‍ Hi...thank you for sharing this update......to "know" is good, and now the treatment plan is moving forward.
Your appts will soon starting happening.....use this time to arrange a ride/if needed.....child care/as needed....and support for you...we are here for you.
Sharing.....if it sheds any light.....I was diagnosed with Stage 2/Early 3 Low colo-rectal cancer.....about 6cm from the anal verge. The oncologist did a colonoscopy TOO, after the the GI Dr "found it"/on colonoscopy....I had 2...back to back.....yuck......Oncologist said it was lower than was advised......I had radiation at Sunnybrook Hospital....a few CTs.....and surgery to remove the 3cm tumour....and was always told of Temporary Ileostomy Bag (I never head the work "temporary"....I suffered from selective hearing then, as I was generally crying during appts.....)tumour was in "wall"....(only)...6 months later....Dr reversed it....(not a picnic now either)
You will get through these upcoming weeks...write down any questions you may have.
For Radiation....you will soon get (I believe) "Tattoo Markings".....a tiny blue like "dot" where they will point and direction the Beams of radiation, to target your needed area. Mine was on a full bladder (almost peed on the table, to the dismay of technician, and my mortification!)
I will "hold" now.....I want to infuse you with strength, and more! You will find inner strength and lean on us....your family....see if hospital has a social worker, if you need to talk it out , more......I did.
Gentle Tip: prep things at home, for the kids/hubby....meals....laundry up to date.....stock up (toothpaste, socks, shampoo etc...)....less outings for dad will be appreciated...
Time to hold.
Ask anything here...and we will respond.
Sending Virtual Hugs
Whitelilies
Whitelilies
1073 Posts
Mamabear41‍ Hello (again)
My apologies, if I already shared the following with you.....
Please, read through the site:
www.CCRAN.org
and Reach out to Filomena....she is a wealth of knowledge and kindness and contacts and more....you will be happy you reached her....she still holds my hand, when I reach out to her/I do.
She knew more than some medical folks!!
Regards
Whitelilies
Mamabear41
35 Posts
Thanks so much for ur response and you didn’t share too much for me the more I know the better, the chemo I m going to be taking is oral pills which will be nice but I have to have a special blood test done to see if there s a chance my body will reject it I believe it cespatine is the chemo drug name apparently some patients can’t tolerate it and can cause possible heart failure so before I start treatment I have to get this done and my marking s get done this coming Friday so in 2 days
Whitelilies
1073 Posts
Mamabear41‍ Hi....I never want to "over do things"....so I err on "hold" a lot....
Oral pill chemo; I know little of cespatine....perhaps others can chime in.
Tattoo markings Friday: good....things are moving forward.....
I found it best to keep busy.....keep all appointments in one book (online for fancy techie folks....laugh)
I just wrote it down, in a mini calendar, for my purse....
I got 4 tiny dots.....2 above and below belly button....and then 1 on each hip....mid hip.
How long is your radiation?
Mine was 5 sessions (5 consecutive days).
That may be booked for you, shortly.....
It is truly good, that treatment starts.....now is better than down the long and winding road.
Head to Dollarama.....stock up on fun, toys, for kids....keep them busy and safe and sound...as you may be resting more than they usually see.....ie at night....keep some new toys for "later"......give them some excitement, down the road.....
Things are moving....keep sharing.....it is ok to feel a range of emotions.....
I had kleenex stored in my bra! for quick needs! (Yeah, bra stayed on for many appts......not all.....)
Regards
Whitelilies
Mamabear41‍ all the best with your upcoming treatment. Take it one step at a time.

I'm so glad you met Whitelilies‍ she is so helpful ☺.

Keep us posted, we are here for you,
Lacey
Mamabear41
35 Posts
Yes I’m so blessed to have found you all and this support group, I am undergoing 28-30 rounds of radiation is what the documents say so a lot and chemo pill name I got wrong it’s capecitabine or (Xeloda)
Whitelilies
1073 Posts
Mamabear41‍ hi.. .28 to 30...sounds like 5 to 6 weeks/daily.....quite common. I know little of xeloda...sorry.
jRiffRaff‍ hi...did you take Xeloda?

you are in good hands.

please. ...reach Filomena. ...she will amaze you....trust me...
whitelilies
jRiffRaff
36 Posts
Hi Mamabear41‍ ,

Whitelilies‍ is correct. I had 4 cycles of Xeloda combined with Oxaliplatin for my chemotherapy last year.

If you have any questions, I'll do my best to answer them.

Best of Luck,
jR
Mamabear41
35 Posts
Thanks jr was wondering what side effects did u get from the Xeloda and did have to under go a special blood test to see if ur body could metabolize the chemo
Whitelilies
1073 Posts
Mamabear41‍ Hi (again).....I have been thinking about Radiation/down there......please know....many people have either diarrhea and/or constipation, from the radiation......I had both! Perhaps, now is a good time (you have a wee bit of "freedom" to buy products from pharmacy for both....immodium for diarrhea/Senukot for constipation. Some people may feel nausea......have something for that.....ie gravol....or bring crackers......
Make sure you have a water bottle at home....in case you need to drink, before your session....anything you can buy NOW; do it!
Some may have a feeling of "bloated".....I did too.....(or gassy)...watch what you eat; No Cabbage!! (please laugh).
Are you able to void? Is there pain in voiding? Is tumour "in way" of voiding?
Did Doctor say how large the tumour is? Size and location are vital to know....as well as the "aggressiveness" of it.....
You may need to attend Radiation solo; covid rules.....perhaps a loved one can drop you off/pick you up.
You may be able to pick your time slots, to best suit your needs; ie when kids occupied with school work (I almost said "at school"/but now in lockdown everywhere.....online learning rules the roost!)....they may just be AT home.....but mommy needs to be at an appointment; and off you go.
I recall your kids are young.....tell them (only if you wish) age appropriate information.......ie mommy needs to see a nice doctor who will help me get better, soon!
They need their routines kept......try hard....
Ask anything; we are all here to support.
Warmly
Whitelilies
Yuliya
79 Posts
Mamabear41
I am glad that you got your diagnosis ( so you know what you dealing with) and the treatment plan. I hope you feel a tiny bit better knowing that there is a plan how to get rid of cancer.
Whitelilies‍ we are all so lucky to have you here in our community. Your support, your guidance, your humor, you practical advice.....how you checking on and caring about others ❤️ Thank you
Narges‍ that the thread you might be interested in.
Whitelilies
1073 Posts
Yuliya‍ Thank you.....I just cried, reading your kind words.
I know what it is like....to feel lost, alone and more.....
And to help, guide, share with others, brings me a sense of purpose....I thank you.
Regards
Whitelilies
I hope mamabear will get through her radiation.....
jRiffRaff
36 Posts
The main side effect I experienced due to the Xeloda was sore/dry skin on my hands and feet, which is the pre-cursor to Hand-Foot syndrome. If you use a good cream (I was recommended and used Udderly Smooth) religiously you should be able to avoid the full blown syndrome. Obviously different people will tend to have different susceptibility, but it worked for me.
I was also warned about mouth sores, but I didn't experience any (or at least none that I think were due to the Xeloda - I sometimes get canker sores regardless).
Of course, the usual 'generic treatment fun'; diarrhea, constipation, fatigue are also side effects, which I experienced, but I think that was more due to the Oxaliplatin, even though they are listed side effects of Xeloda as well. The Oxaliplatin was an infusion at the beginning of my cycle, followed by 14 days of Xeloda, and then a week off.

jR
Narges
32 Posts
Mamabear41‍ Hi dear, sorry for your story but I am happy to hear that you accept your journey. I have stage 3 rectal cancer and I will have my radio and oral chemo for five weeks from April 19 .then I am planned for 8 cycles of Iv chemo (folfox).
I am going to be treated as aggressively as possible ( as they told).
but you know what. We are ready for that and we are going to be more day after day. Feel free to massage when ever you feel like sharing. This group is a great place with great supportive people.
take care
Babs1
42 Posts
Hi Mamabear41‍,
I am very interested in your comment about needing a special blood test, and if it is possible that the name of your chemo is capecitabine. The reason I am asking is that capecitabine is a standard protocol chemo for colorectal cancer, it comes in pill form, and it was one of the chemos prescribed for me. I was diagnosed in 2018 with colon cancer. The problem that I had was that the gene in my liver that metabolizes the chemo didn’t, resulting in it building up to toxic levels quickly, only 2 days of treatment. It’s called DPD deficiency. In 2018, in Canada, it was not standard protocol to do a DPD blood test prior to prescribing them because the deficiency was rare. The last stat that I read was 2 to 8%. Doing this test before treatment is a standard practice in many European countries because of the number of deaths that they had, combined with the cost to their health system in treating patients that survived the treatment, which cost was significantly more than doing tests each time.

I am really hoping that they have now started to do DPD testing in Canada. Any additional information that you can provide would be greatly appreciated. My fingers are crossed that what they are doing for you is to test for DPD deficiency.

Wishing you the best in this journey!

Babs
2018Colon cancer diagnosis, emergency surgery to remove tumour that was blocking colon, didn’t make it thru 1st chemo cycle
due to toxicity. 2 years NED, but permanently disabled due to chemo damage to nerve system.


Mamabear41
35 Posts
Yes the special blood test is exactly what u said and I’m doing treatment in London ontario which is where i will be getting the testing done
Babs1
42 Posts
Mamabear41‍ , thank you, that is excellent news! As DPD deficiency is both hereditary & usually symptomless, I was concerned about my children and grandchildren & that is one less concern. I know they were doing a clinical trial in 2018. It’s too late for me, but will save many from serious & deadly side effects going forward. Recall a UK case study, can’t find it at the moment, where a DPD deficient patient received capecitabine at a significantly reduced dosage, think it was at 10% of normal protocol, less frequently, and it worked well, so it is not totally off the table for patients.

Thanks again!!!
babs
ShariM
43 Posts

Hello,

I was diagnosed with stage 3 rectal cancer also low in rectum and in wall. I had 3x4 rounds of chemo and 25 rounds of radiation. It did not get rid of it all so a month later I had surgery. In that month of waiting the radiation continued to work so when it came time for surgery the tumor was so small that he saved my rectum. I was told I would have a permanent bag and woke up with a temporary to my surprise! I am waiting for reversal this month.

I have learned they can give you a plan but it can change. It sounds like you are in good hands. It is amazing what the can do these days.

Stay strong and positive!🌷

Shari

Whitelilies
1073 Posts
Mamabear41‍ Hello.......how are you doing? how are things moving along?
Was thinking of you.....

Regards
Whitelilies
Gymrat
16 Posts
Mamabear41:
Yes I’m so blessed to have found you all and this support group, I am undergoing 28-30 rounds of radiation is what the documents say so a lot and chemo pill name I got wrong it’s capecitabine or (Xeloda)

Be sure you get that test. They didn’t offer it to me before my chemo and I turned out to be one of the 2-3% of people without the DPD enzyme needed to metabolize the capecitabine. Ten days into my first round I would up in hospital for 3 wks after I collapsed. My right kidney shut dow, heart did crazy things, I developed a lesion on my otherwise healthy liver and I developed 3 blood clots. Good to hear they’re offering the test. I have recovered except for the blood clots. I’m on meds for them. I was Stage 2C. My oncologist agreed no more chemo for me. In January I tested “No Evidence of Disease”. My tumour was in my ascending colon...opposite side from yours. They removed 12” and 14 lymph nodes. I very successful surgery. I was very lucky to live let alone the good diagnosis. Hang in there. It’s a wild ride but there is good support on this site.
Gymrat

Mamabear41
35 Posts
Hi everyone sorry I haven’t been on much dealing with bottom pain and no energy, the 26th can’t come soon enough but at the same time I wish it wasn’t, I’m terrified of my treatment (the radiation part) 30 treatments seems like a boat load , I ve read stories of people who have undergone my treatment and are in excruciating pain and even my radiation oncologist told me this ain’t gonna be no walk in the park which I already figured out but some of the burns I ve been told about makes me not even wanna get treatment done but I know I need to do this especially for my babies, they are counting on their mama to beat this cancer and I m gonna fight like hell but right now apart of me wishes it was all a horrible nightmare. To all of you who have gotten thru ur treatments and stuck with it, you are definitely warriors I hope I’m as tough and as strong as u all, I have fought a lot of battles in my life but I’m so scared that this is gonna be one battle I may not get through. Sorry for the negative rant on my end, heck I haven’t even started yet and I know that there are a lot worse cancers in this group than my stage 3 rectal cancer diagnosis I’m just really scared 🙁
MCoaster
568 Posts
Mamabear41
Have just read your post and want to send healing thoughts for your treatment. I had breast cancer which required no radiation and know how scared I was and can only imagine how you must be feeling. I tell others not to Google etc but of course I did. Remember though that everyone' experience is individual and the worst may not happen and the best (good healing) may also happen. Live in the moment and keep reaching out.
We are all here for you and understand the need for a good rant.
Be gentle on yourself and it is really ok to be scared.
Hugs. ❤
MCoaster
Boby1511
454 Posts
Mamabear41
Hi there, I'm happy for you that you now have a plan.
30 Treatments of radiations - I too had this - 25 regular and 5 boosters
Mine came with alot of diarrhea and some nausea and fatigue.
The nice thing about radiation is they do monitor you a lot.
The techs (they are not nurses) that administer the radiation can pass messages to your doctor.
If yours is like mine, you'll meet with your radiologist once a week in person just to check things.
I had IV hydration (at home) prescribed. It is quite nice, improved my energy and appetite and pain.
If you find you are struggling you can request this.
The treatment itself is painless. The pain for me was from inflamed bowels which can happen and was made worse by dehydration. Once I got watered it improved.
Just keep your team in the loop. They are there to keep you comfortable.
It's ok to be scared. You will get more familiar with the treatment and side effects.
A few days in I felt very comfortable there. You become a regular. You get to know the names of all the techs and see other patients. I used to watch and figure out what day someone was on. You get to know the security (covid welcome team) nurses at the hospital. lol. The nurses always passed me in quick. (Our oncology dep is right beside the main door to hospital, where you get your new mask every day and they ask you the covid questions).
Wishing you the best as you begin treatments.
Whitelilies
1073 Posts
Mamabear41‍ Hello......thinking of you for Wednesday: Flex Sig!
If you catch your breath, afterwards, and are able to let us know how things went, please do.....rest up first.
It will be OK.....
Regards
Whitelilies
JustJan
617 Posts
Mamabear41‍, I don’t have the same type of cancer as you do, but did have radiation for my breast cancer. As Bobby1511 said the techs are great and will check in with you at each treatment. Let them know about side effects and they will contact the radiation oncologist if needed. I think you got some great advice and I do hope radiation is as easy on you as possible. Sending a virtual hug.
Gymrat
16 Posts
Mamabear41:
Hi everyone sorry I haven’t been on much dealing with bottom pain and no energy, the 26th can’t come soon enough but at the same time I wish it wasn’t, I’m terrified of my treatment (the radiation part) 30 treatments seems like a boat load , I ve read stories of people who have undergone my treatment and are in excruciating pain and even my radiation oncologist told me this ain’t gonna be no walk in the park which I already figured out but some of the burns I ve been told about makes me not even wanna get treatment done but I know I need to do this especially for my babies, they are counting on their mama to beat this cancer and I m gonna fight like hell but right now apart of me wishes it was all a horrible nightmare. To all of you who have gotten thru ur treatments and stuck with it, you are definitely warriors I hope I’m as tough and as strong as u all, I have fought a lot of battles in my life but I’m so scared that this is gonna be one battle I may not get through. Sorry for the negative rant on my end, heck I haven’t even started yet and I know that there are a lot worse cancers in this group than my stage 3 rectal cancer diagnosis I’m just really scared 🙁

Never worry about not replying promptly! Take care of you. I didn’t have radiation with my colon cancer since my monster tumour was at the other end of the colon compared to yours. The capecitebene was my downfall. Thank God my surgery was so successful! Your team will take good care of you. Have faith in them and in yourself. You can handle more than you think.
Big hugs as your treatment time gets closer. Hang in there!

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