New to forum--My story and concerns

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SoupRgirl
Posts: 17
Joined: Sat Nov 07, 2015 10:31 am

New to forum--My story and concerns

Postby SoupRgirl » Sat Nov 07, 2015 10:10 pm

Hello all,
I have been reading your stories and can see the wonderful support offered to each other. The kindness and community is incredible on here. I am humbled and astounded at what challenges many of you are facing and the dignity and grace you exhibit...and meanwhile are such a support to others on here.

This is my story and my concerns. I Will welcome any insight or thoughts or opinions any of you have to spare:
-I am a 38year old mom of four boys, my youngest is 17months old, oldest is 16years old!
-I have always been on the constipated side my whole life and for the last 6 months or so, had rectal bleeding and doc insisted it was hemerhoids (sp)
-bleeding persisted, coupled with extreme tiredness and went back to doc who ordered colonoscopy
-4cm polyp/tumour discovered in rectum
-surgeon said it was soft rather than hard and said that was a good sign but also said it had been there a long time. He then started talking about cancer for a bit and sent the three pieces he took of the tumour to pathology. From the photos I was given, it looks like he cut it down to the wall (if that makes sense?).
-got pathology back saying the pieces tested negative for cancer, but am being booked in very soon to have the rest removed (the wall where the tumour was attached, from my understanding)

My burning questions are as follows:
-how relieved should I be? That is a large polyp and the path report stated (in med terms) that is looked very much like cancer
-how thorough is testing...do they swab each piece or? Are they ever wrong?
-if the testing is in fact super thorough, what are the odds the rest is also benign?

This might seem like I'm looking a gift horse in the mouth at this point..but there is a strange coincidence that is quite disturbing: my cousin who is a couple years older than me was diagnosed with rectal cancer stage 4 when she was my age. As she lives a distance away I do not have exact details nor do I want to bother her for details, but I do know she lost one ovary, and the cancer is also in her spine. She is currently under yet another round of chemo and has four daughters still at home. (Enough said). My cousin is at a normal weight like me, active non-smoker, healthy, no diabetes or any health concerns etc). It seems maybe superstitious, but I am skeptical that I dodged a bullet when she did not? Especially in light of the size of my tumour I'm not going to be totally relaxed until the pathology comes back for remaining tumour.

Another concern I have that I would like feedback on: do tumours affect menstruation? Three periods prior to removal of most of tumour were very unusual for me (two weeks long) as well as bleeding between periods. This has never ever happened to me so I am concerned.

And lastly, my lower back has been very sore in the center with no sign of going away (since Monday when tumour was -mostly-removed). Is this normal post polyp/tumour removal stuff?

I appreciate any feedback you may have...I read quite a few posts but there must be some of you who remember previous threads that may address some of these things I'm dealing with?

All the best,
Maurissa
-Bleeding from bottom since Spring 2015
-Feeling chronically tired summer and fall 2015
-November 2nd 4cm tubulovillious adenoma with focal high-grade dysplasia discovered in rectum during colonoscopy-partly removed
-pathology for polyp/tumor removed shows negative for carcinoma Nov 5
-currently waiting to be booked into surgery to remove remaining polyp/tumour

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: New to forum--My story and concerns

Postby cathy123 » Sat Nov 07, 2015 11:54 pm

Hi Maurissa,

Well, it sounds like you caught this in time. Congratulations! I am sure they will do more tests when they remove the rest of the polyp, and if it comes back differently you will be able to have the appropriate followup treatment. Hopefully it is still benign.

After my colonoscopy the pieces of the tumor removed were not cancerous (but had a high degree of dysplasia). I had a second procedure and that time it came back positive for cancer. All along the surgeon told me he was pretty sure it was malignant, so I didn't get my hopes up too much. But at least it was stage 1.

Given the family connection I would ask about genetic testing. Hopefully you caught this one in time, but it sounds like you have something that may have become cancer given another year or two.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: New to forum--My story and concerns

Postby cathy123 » Sat Nov 07, 2015 11:54 pm

Oh, and I did not have any menstrual or back issues do can't help you there.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

Jachut
Posts: 1137
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: New to forum--My story and concerns

Postby Jachut » Sun Nov 08, 2015 2:41 am

Well, I'd be relieved but apprehensive - you do have a big and probably life changing surgery ahead of you. How much of your rectum will you be able to keep? I'd think as far as gynaecological issues are concerned, its radiation and chemo that cause the problems there. I was rather sore after diagnosis, from having no pain whatsoever, all the poking and prodding did produce a fair degree of residual pain. Hopefully that's all it is for you.

Lisa90
Posts: 50
Joined: Tue Oct 13, 2015 4:26 pm

Re: New to forum--My story and concerns

Postby Lisa90 » Sun Nov 08, 2015 3:55 am

Welcome to this forum!

I'm new(ish) here too and it is a very friendly place :)

I'm probably going to tell you what you don't want to hear - wait until you get all the results back before you make up your mind either way, that it's cancer or not cancer. Unfortunately they can make mistakes but it's very rare. Sometimes a test will come out differently the first time than subsequent tests, too. But just wait until you reach that bridge to cross it. Holding thumbs that it keeps coming back benign though!

As for the menstual problems, when they did my colectomy my surgeon poked around a little bit more and found a benign cyst in my fallopian tube. My periods had always been a little irregular, but maybe that had something to do with it, in my case... I think you should see a gynaecologist though, especially if it persists, as it sounds like you're not normally irregular.

Unfortunately I can't answer your questions about pain as I didn't have any polyps removed, but I think it's entirely possible that it would be sore :shock:

Best of luck!
25y/o F
Symptom onset Aug '14
Colonoscopy done 1 Sep '15
Emergency colectomy done 2 Sep '15 due to obstructing tumor
DX CC stage IIIB - Sigmoid Colon (Adenocarcinoma)
FOLFOX started 13 Oct '15
Oxaliplatin dropped at treatment 9
Treatment completed 5 May '16
Li-Fraumeni syndrome confirmed

Previous history:
- Rhabdomyosarcoma ('92) Right leg
- Osteosarcoma ('01) Right leg
- Osteosarcoma ('12) Left leg (recurred '14)


KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: New to forum--My story and concerns

Postby KElizabeth » Sun Nov 08, 2015 10:56 am

I agree that you should wait till the results from the next procedure before making any assumptions. Never feel afraid to ask your GP about your concerns as he or she should be following you pretty closely now. You should consider the genetic tests for familiar colon cancer at least. It's likely, if you do not have strong evidence of direct family with colon cancer, you may have to pay for this without help from insurance, but it's not too expensive if you just test for a few of the DNA defects and worth the piece of mind.
It sure sounds like you caught this early, so rest easy and love on those kids!
K. Elizabeth
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

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SoupRgirl
Posts: 17
Joined: Sat Nov 07, 2015 10:31 am

Re: New to forum--My story and concerns

Postby SoupRgirl » Sun Nov 08, 2015 11:42 am

cathy123 wrote:Hi Maurissa,

Well, it sounds like you caught this in time. Congratulations! I am sure they will do more tests when they remove the rest of the polyp, and if it comes back differently you will be able to have the appropriate followup treatment. Hopefully it is still benign.

After my colonoscopy the pieces of the tumor removed were not cancerous (but had a high degree of dysplasia). I had a second procedure and that time it came back positive for cancer. All along the surgeon told me he was pretty sure it was malignant, so I didn't get my hopes up too much. But at least it was stage 1.

Given the family connection I would ask about genetic testing. Hopefully you caught this one in time, but it sounds like you have something that may have become cancer given another year or two.



Hi Cathy,
(Not sure if I am responding correctly, but here goes...!)
Thank you so much for your response and also for sharing your story.
I am cautiously optimistic, but we'll see what happens at surgery. My friends and family are so relieved that my results from first pathology report were negative, they seem to have put it away on a shelf out of their minds like I am somehow in the clear on all counts but I still have surgery and the very real possibility of a different outcome this time.
Thanks again for sharing your story...I was hoping that first clear path was a given for a second, but I guess that's not true.

All the best,
Maurissa
-Bleeding from bottom since Spring 2015
-Feeling chronically tired summer and fall 2015
-November 2nd 4cm tubulovillious adenoma with focal high-grade dysplasia discovered in rectum during colonoscopy-partly removed
-pathology for polyp/tumor removed shows negative for carcinoma Nov 5
-currently waiting to be booked into surgery to remove remaining polyp/tumour

User avatar
SoupRgirl
Posts: 17
Joined: Sat Nov 07, 2015 10:31 am

Re: New to forum--My story and concerns

Postby SoupRgirl » Sun Nov 08, 2015 11:48 am

cathy123 wrote:Oh, and I did not have any menstrual or back issues do can't help you there.


Okay, figured it can never hurt to ask...for now I'm going to chalk it up to stress and back situation to four pregnancies and carrying my beefy 17 month old around. :)

Also forgot to thank you for genetic testing suggestion...I have an appt with family doc Tuesday so I'll ask him about it.

Sincerely,
Maurissa
-Bleeding from bottom since Spring 2015
-Feeling chronically tired summer and fall 2015
-November 2nd 4cm tubulovillious adenoma with focal high-grade dysplasia discovered in rectum during colonoscopy-partly removed
-pathology for polyp/tumor removed shows negative for carcinoma Nov 5
-currently waiting to be booked into surgery to remove remaining polyp/tumour

User avatar
SoupRgirl
Posts: 17
Joined: Sat Nov 07, 2015 10:31 am

Re: New to forum--My story and concerns

Postby SoupRgirl » Sun Nov 08, 2015 11:58 am

Jachut wrote:Well, I'd be relieved but apprehensive - you do have a big and probably life changing surgery ahead of you. How much of your rectum will you be able to keep? I'd think as far as gynaecological issues are concerned, its radiation and chemo that cause the problems there. I was rather sore after diagnosis, from having no pain whatsoever, all the poking and prodding did produce a fair degree of residual pain. Hopefully that's all it is for you.


Jachut,
I am both those things, yes.
Surgeon said the polyp was 8cm up, and he is removing just the site where it was attached, so making a hole, then closing it up. So it looks from the information I've been given to date, I will be able to still void normally after surgery. Although once he goes in, that narrative may change.
I am hoping the sore back is from the procedure. The period stuff really has me stumped. I have an appt with my family doc on Tuesday so maybe I'll ask for a gynocology referal.
Thanks for your support,
Sincerely,
Maurissa
-Bleeding from bottom since Spring 2015
-Feeling chronically tired summer and fall 2015
-November 2nd 4cm tubulovillious adenoma with focal high-grade dysplasia discovered in rectum during colonoscopy-partly removed
-pathology for polyp/tumor removed shows negative for carcinoma Nov 5
-currently waiting to be booked into surgery to remove remaining polyp/tumour

User avatar
SoupRgirl
Posts: 17
Joined: Sat Nov 07, 2015 10:31 am

Re: New to forum--My story and concerns

Postby SoupRgirl » Sun Nov 08, 2015 12:17 pm

Lisa90 wrote:Welcome to this forum!

I'm new(ish) here too and it is a very friendly place :)

I'm probably going to tell you what you don't want to hear - wait until you get all the results back before you make up your mind either way, that it's cancer or not cancer. Unfortunately they can make mistakes but it's very rare. Sometimes a test will come out differently the first time than subsequent tests, too. But just wait until you reach that bridge to cross it. Holding thumbs that it keeps coming back benign though!

As for the menstual problems, when they did my colectomy my surgeon poked around a little bit more and found a benign cyst in my fallopian tube. My periods had always been a little irregular, but maybe that had something to do with it, in my case... I think you should see a gynaecologist though, especially if it persists, as it sounds like you're not normally irregular.

Unfortunately I can't answer your questions about pain as I didn't have any polyps removed, but I think it's entirely possible that it would be sore :shock:

Best of luck!


Lisa 90,
Thank you for the welcome! I was a little hesitant to post initially (obviously I overcame that in the very long initial post) am so glad I did though.
Yes, for now I am cautiously optimistic. But time will tell and until then I'm just keeping informed on possible outcomes. I also know from seeing what a great bunch of folk are on here, that if things don't go well, I can handle any outcome as odds are, someone has been there done that on here. :) So I will not be alone.
I am regular like clockwork with periods so I am going to see a gynocologist about that for sure. Definitely worth looking into.

Thank you for powering through my very long post.
I am so glad I found this forum, have learned lots already and what a great group of people.

All the best,
Maurissa
-Bleeding from bottom since Spring 2015
-Feeling chronically tired summer and fall 2015
-November 2nd 4cm tubulovillious adenoma with focal high-grade dysplasia discovered in rectum during colonoscopy-partly removed
-pathology for polyp/tumor removed shows negative for carcinoma Nov 5
-currently waiting to be booked into surgery to remove remaining polyp/tumour

User avatar
SoupRgirl
Posts: 17
Joined: Sat Nov 07, 2015 10:31 am

Re: New to forum--My story and concerns

Postby SoupRgirl » Sun Nov 08, 2015 12:27 pm

Jacques wrote:
SoupRgirl wrote: ... My burning questions are as follows:
-how relieved should I be? That is a large polyp and the path report stated (in med terms) that is looked very much like cancer
-how thorough is testing...do they swab each piece or? Are they ever wrong?
-if the testing is in fact super thorough, what are the odds the rest is also benign? ...

I don't have the answers to your questions, but since the procedure you are facing is a polypectomy of some sort, then you might be interested in reading about the pathology reporting standards for such procedures. (Note: The article below is a highly technical article, but it may have the answers to some of your questions)

Polypectomy and Local Resections of the Colorectum

https://www.rcpa.edu.au/Library/Practising-Pathology/Structured-Pathology-Reporting-of-Cancer/Cancer-Protocols/Gastrointestinal/Guide-Polypectomy-local-resections-CR

https://www.rcpa.edu.au/Library/Practising-Pathology/Macroscopic-Cut-Up/Specimen/Gastrointestinal/Colorectal/Colorectal-polyp/Colorectal-polyp-dictation-template


Excellent! Thank you so much Jacques...I was considering calling the lab and asking but I know they are busy and didn't know how much luck I'd have.
This is exactly what I was wondering about. I am reading these tonight after my kiddos are in bed...how much I'll understand remains to be seen...!
All the best,
Maurissa
-Bleeding from bottom since Spring 2015
-Feeling chronically tired summer and fall 2015
-November 2nd 4cm tubulovillious adenoma with focal high-grade dysplasia discovered in rectum during colonoscopy-partly removed
-pathology for polyp/tumor removed shows negative for carcinoma Nov 5
-currently waiting to be booked into surgery to remove remaining polyp/tumour

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: New to forum--My story and concerns

Postby cathy123 » Sun Nov 08, 2015 12:44 pm

SoupRgirl wrote:
cathy123 wrote:Hi Maurissa,

Well, it sounds like you caught this in time. Congratulations! I am sure they will do more tests when they remove the rest of the polyp, and if it comes back differently you will be able to have the appropriate followup treatment. Hopefully it is still benign.

After my colonoscopy the pieces of the tumor removed were not cancerous (but had a high degree of dysplasia). I had a second procedure and that time it came back positive for cancer. All along the surgeon told me he was pretty sure it was malignant, so I didn't get my hopes up too much. But at least it was stage 1.

Given the family connection I would ask about genetic testing. Hopefully you caught this one in time, but it sounds like you have something that may have become cancer given another year or two.



Hi Cathy,
(Not sure if I am responding correctly, but here goes...!)
Thank you so much for your response and also for sharing your story.
I am cautiously optimistic, but we'll see what happens at surgery. My friends and family are so relieved that my results from first pathology report were negative, they seem to have put it away on a shelf out of their minds like I am somehow in the clear on all counts but I still have surgery and the very real possibility of a different outcome this time.
Thanks again for sharing your story...I was hoping that first clear path was a given for a second, but I guess that's not true.

All the best,
Maurissa


Hope I didn't scare you - if you dr is going ahead with surgery I am guessing he is more confident of the biopsy results. Mine pretty much told me he knew it was cancer all along.

Do you know what type of surgery you are having? Are the going thru the abdomen and removing a section of your rectum/colon along with lymph nodes or going in below and taking out a piece of the wall? My understanding is that the second type does not leave you with too many after effects. That is what I would choose if it wasn't definitely cancerous.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

User avatar
SoupRgirl
Posts: 17
Joined: Sat Nov 07, 2015 10:31 am

Re: New to forum--My story and concerns

Postby SoupRgirl » Mon Nov 09, 2015 1:30 am

cathy123 wrote:
SoupRgirl wrote:
cathy123 wrote:Hi Maurissa,

Well, it sounds like you caught this in time. Congratulations! I am sure they will do more tests when they remove the rest of the polyp, and if it comes back differently you will be able to have the appropriate followup treatment. Hopefully it is still benign.

After my colonoscopy the pieces of the tumor removed were not cancerous (but had a high degree of dysplasia). I had a second procedure and that time it came back positive for cancer. All along the surgeon told me he was pretty sure it was malignant, so I didn't get my hopes up too much. But at least it was stage 1.

Given the family connection I would ask about genetic testing. Hopefully you caught this one in time, but it sounds like you have something that may have become cancer given another year or two.



Hi Cathy,
(Not sure if I am responding correctly, but here goes...!)
Thank you so much for your response and also for sharing your story.
I am cautiously optimistic, but we'll see what happens at surgery. My friends and family are so relieved that my results from first pathology report were negative, they seem to have put it away on a shelf out of their minds like I am somehow in the clear on all counts but I still have surgery and the very real possibility of a different outcome this time.
Thanks again for sharing your story...I was hoping that first clear path was a given for a second, but I guess that's not true.

All the best,
Maurissa


Hope I didn't scare you - if you dr is going ahead with surgery I am guessing he is more confident of the biopsy results. Mine pretty much told me he knew it was cancer all along.

Do you know what type of surgery you are having? Are the going thru the abdomen and removing a section of your rectum/colon along with lymph nodes or going in below and taking out a piece of the wall? My understanding is that the second type does not leave you with too many after effects. That is what I would choose if it wasn't definitely cancerous.


Hi Cathy,
No Worries, I'm not scared per sey, maybe a little worried. Surgeon is going in through rectum, taking out a piece of the wall and then he's closing it up. No resectioning or lymph node involvement on agenda.
Not sure if he'd see problems from the 'inside', so to speak , when he's doing the procedure, and if he were, I don't know what the protocol would be.

Maybe I need to relax a bit?

All the best,
Maurissa
-Bleeding from bottom since Spring 2015
-Feeling chronically tired summer and fall 2015
-November 2nd 4cm tubulovillious adenoma with focal high-grade dysplasia discovered in rectum during colonoscopy-partly removed
-pathology for polyp/tumor removed shows negative for carcinoma Nov 5
-currently waiting to be booked into surgery to remove remaining polyp/tumour

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: New to forum--My story and concerns

Postby aja1121 » Tue Nov 10, 2015 9:46 pm

Maurissa, welcome to the forum. As a caregiver and researcher for the past 1.5 years, I feel confident there is no better place online to get information and support.

Off topic: Was your username inspired by the show Party Down? :)
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died


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