So they said it was a hemorrhoid...

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ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

So they said it was a hemorrhoid...

Postby ValZen » Fri Sep 08, 2017 8:45 am

First of all, I would like to say how helpful and encouraging this site has been...I've been an avid reader and finally decided to register myself! I'm 53 years old and am one of those who thought I was doing all the "right things" following up on rectal bleeding and still, here I am with (according to the oncology intern yesterday)..."technically considered a stage 4" because I have one rogue, suspicious looking distant lymph node in my pelvic region - away from the other rectal nodes... this is after I finally learned what questions to ask so it was a bit of a shock! They're still aiming at chemo/radiation then surgery, but that "all depends on my next mri and ct scan" - to see how I'm doing with the Folfox so far. So, I guess I'm asking: have any of you ever felt like your diagnosis news just kept getting a little worse from what you were originally told? I had rectal bleeding 4 years ago and asked for a colonoscopy. The doctor removed 4 small polyps and said they were "benign". A year later, I had more bleeding and went back to my family doctor and she insisted the colonoscopy was the "gold standard" and had a look at my bum area and said she was sure it was an angry looking external hemhorrhoid and gave me some cream. I kept having bits of bleeding for another few years - very intermittent - and kept using my cream as needed. This past May, I landed in emerg with a scary amount of bleeding and the emerg doctor said he'd schedule a scope. I was really scared at that point and went back to my doctor (she was away and I saw one of the other docs there). She did a small scope and said she definitely ("99.9" she said...) saw 2 internal hemorrhoids and one had ruptured. I was so relieved and practically skipped out of there. She told me to still go for a routine colonoscopy because it was almost time for it anyway. Because I didn't think there was a rush, I had a colonoscopy booked for 6 weeks later. I almost cancelled it, in fact, thinking "it's just been 4 years and she said '99.9%' sure". My husband and daughter convinced me to still go and get it over with. I went for the scope and woke up to the doctor saying "possible radiation..." He then came in with this sad face and said there were no internal hemorrhoids and it was a rectal tumour. From there, I was ct scanned and mri'd and told there was no local spread...then that changed to the team seeing the distant lymph node on the CT scan and they were changing their treatment tactic to immediate Folfox infusions. That was in late July...I don't know why, but I just thought it was a stage 3 or so and I was completely curable still. So, yesterday when I went and decided to fire off all of my questions...I was left quite shocked. It's so weird to me that in spite of all my efforts I still wound up where I am. I'm realizing though, I have to stay positive and am grateful for any feedback or similar experiences. If anything, this has really shaken me up into "living in the moment and appreciating every single one..." Thanks for reading.

Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Re: So they said it was a hemorrhoid...

Postby Achilles Torn » Fri Sep 08, 2017 10:05 am

Hey Valzen,
Sorry you have to be here. My story is a little similar, I had rectal bleeding in 2010 at 34 and colonoscopy found a large ugly polyp which pathology came back as precancerous. It was removed during a second scope procedure and I had follow-up scopes at 1 year and 2-year mark which were clean, so I was told to come back in 5 years. I came back 4 years 9 months later to have Stage IV cancer in the exact same spot as the original polyp with most of the growth inside the colon wall and lymph nodes (hence no symptoms). I have since read a study that said follow up scopes after polyp removal have a 25% failure rate for detecting remaining cancer cells. Had I read that back then I would have insisted on the yearly scopes.

If your distant lymph node spread was limited (ie 1-3) you have a good chance of it being wiped out by Chemo (several members here have had such results) or depending on location having surgical resection with curative intent of both the node and primary tumour. Also without a biopsy, they can't be certain that it is cancer in the lymph nodes as they can be enlarged for other reasons. Be aggressive, seek second opinions, and go for the treatment option you think gives you the best chance.

Stay positive as you have every reason for hope.

AT
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

Re: So they said it was a hemorrhoid...

Postby ValZen » Fri Sep 08, 2017 10:25 am

Hi AT, I'm very sorry to hear you've had a similar experience to mine. I hope you are doing really well with your treatments. It's amazing how these things can happen when we're diligent and doing everything we know to do. And I have to thank you so much for your encouraging words - you made my day. I was having a day of not returned phone calls from doctors and generally feeling discouraged, until I read what you said about the limited spread. Mine is the 1 node, so I will stay very positive that the chemo will do the trick!

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: So they said it was a hemorrhoid...

Postby NHMike » Fri Sep 08, 2017 5:52 pm

One of the questions that I have about the Stage 3 protocol is what happens if the cancer spreads before treatment starts or after treatment ends and I haven't received an answer on this. It is the scans that catch this stuff and they aren't routinely done during treatment. It maybe a pure numbers thing as well. So I'm technically 3B but I've heard of 2s turning into 4s. Your 1 distant lymph node, though, does sound better than most and it's still local - it hasn't spread to other organs. So I hope that they can just do a resect of the other polyp at some point.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

Re: So they said it was a hemorrhoid...

Postby ValZen » Fri Sep 08, 2017 7:35 pm

I had that same question Mike - when I went for my first consult after diagnosis - I thought I was more a stage 3 (they hadn't noticed the distant node yet...). I was concerned what if treatment doesn't start right away and what if it spreads...(I'm sure we all have so many "what ifs" just trying to wrap our heads around the diagnosis in the first place) All I was told was it doesn't effect the overall outcome. Whatever that means. And I'm finding that unless I know exactly what to ask, they won't mention everything. I know they do a ct scan and mri usually about half way through your initial chemo or chemo/rad to see if it's working. I've just finished 3 rounds of Folfox chemo and have a ct scan next week. From what I heard initially from my surgeon - stage 3B means you're definitely in that group where the word "curable" is used! That must be reassuring as well just to see your CEA marker down so much. Thanks for the encouraging words - I guess it's all in staying positive and on top of all the procedures, tests, etc.

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: So they said it was a hemorrhoid...

Postby stu » Sat Sep 09, 2017 3:19 am

Hi ,
I will let you read my signature relating to my mum. I thought it might encourage you to know that pre chemo her lymph nodes were large and reactionary around the Colon tumour . A very significant secondary spread had set up camp in her liver . Post chemo there was no evidence on the scan of lymph node activity . Post surgery there was no active cancer cells found in her lymph nodes .
Eight years later she is still being subjected to the awful scanning process . A necessary evil that has done a fantastic job keeping her alive .
Wishing you every success as your team get a treatment plan together .
Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

Re: So they said it was a hemorrhoid...

Postby ValZen » Sat Sep 09, 2017 8:48 am

Stu, thank you for sharing your Mum's story with me - wow. That IS very encouraging! I think it's hard at times when you're in the midst of all the appointments, scans and technical talk from doctors not to think the worst. I'm finding it's a constant work in progress picking myself back up but inspiring stories like your Mum's really do help. I'm so grateful for this board. Thank you again.

benben
Posts: 324
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: So they said it was a hemorrhoid...

Postby benben » Sat Sep 09, 2017 10:01 am

ValZen wrote:Stu, thank you for sharing your Mum's story with me - wow. That IS very encouraging! I think it's hard at times when you're in the midst of all the appointments, scans and technical talk from doctors not to think the worst. I'm finding it's a constant work in progress picking myself back up but inspiring stories like your Mum's really do help. I'm so grateful for this board. Thank you again.


Don't lose heart, and don't give up the fight ValZen.
There are many stage 4 diagnosed individuals that are NED currently on this board as well as past members.
There is good advancement in treatments and surgical removal of mets.
Hold on to those stories as you continue forward. It's certainly an emotional trip, but keep on keeping on day by day.
Hold on to hope and faith.

Best of luck in your fight.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)

ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

Re: So they said it was a hemorrhoid...

Postby ValZen » Sat Sep 09, 2017 12:03 pm

Thank you BenBen! And you're right - it does feel much better to be hopeful than scared and worried! It's uplifting just to be able to talk with people like yourself who can relate and are going through the same kinds of treatments etc. Best of luck to you too and I hope you find you get amazingly good results from your current chemo.!

ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

Re: So they said it was...

Postby ValZen » Tue Aug 14, 2018 5:35 pm

I just thought I would update my progress here - one full year later! I just finished my treatments in May and had my reversal surgery on July 26th. My treatment started with 4 rounds of Folfox up front, to help with a "rogue node" that was off to the side in my pelvis. After that, I went on to 25 rounds of radiation (with Xeloda) to both the node and to the tumour. I had my ultra low re-section surgery in January (3 cm from the AV) and my staging came back as T3N2M0. The rogue node was completely gone as Achilles Torn suggested could happen in response to my first post. (Which was and is still very much appreciated!) I had 4 out of 12 nodes affected and clean margins with my surgery. A month after, I did 5 more rounds of Folfox as "mop-up". My treatment protocol was a bit different, but the same basic idea. I had a CT scan just before reversal surgery in July and all was clear. There are so many encouraging stories on here and the support is AMAZING. I wish I had been on here more throughout my own treatment - I think it would have put my mind at ease. I wish all the very best for a full recovery to everyone new or in different stages of treatment. If anyone reads any of my info. and has any questions about my treatment protocol - I'd be honored to answer, although the advice given on here for every question is superb, so there's probably not much more I could add...but I'm happy to even offer encouragement! I know how much it helped me.

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: So they said it was a hemorrhoid...

Postby DarknessEmbraced » Tue Aug 14, 2018 6:06 pm

Congratulations! That's wonderful news! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

rtcasper
Posts: 50
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: So they said it was a hemorrhoid...

Postby rtcasper » Tue Aug 14, 2018 6:09 pm

Thank you ValZen for posting and updating us with your story. I find it very uplifting even as I am still waiting to get the appropriate scans done to properly diag my tumor. It sounds like you are doing well and I'm so glad for that. I wish you all the best and hope you'll continue to update us occasionally. I would ask questions, but right at this moment I'm tired of thinking about it, lol. Ugh, it can dominate your mind if u let it, but yes, stay positive!
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0-no chemo recommended
Jan 8-stoma takedown
Jan-April- C diff
May-Fecal matter transplant
Sept-Clean scan NED

ValZen
Posts: 33
Joined: Fri Sep 08, 2017 8:16 am

Re: So they said it was a hemorrhoid...

Postby ValZen » Wed Aug 15, 2018 11:15 am

Thank you so much DarknessEmbraced and rtcasper! I'll watch for updates from you rtcasper and hope you have your treatment plan of action soon! I understand completely the "tired of thinking about it" part! It'll all be behind you soon enough and the only plan of action left will be something fun - like a vacation!


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