SWF, so many uncertainties NOW!!!!

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Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

SWF, so many uncertainties NOW!!!!

Postby Eleda » Mon Jan 01, 2018 2:47 pm

As I write this on on a plane to Spain for my last bit of fun before my treatment starts on WED, 3.55 PM RADIOCHEMOTHERPY 5.5 WEEKS 1650MG ORAL ZELODA ,
Quick background
I'm 47 single parent to 3 boys 6/9/12 and self employed ( hairdresser)
I hadL2ttle blood in stool over summer of 2017, nothing I was, concerned about, passed it off as, piles aggravated bowel ( on off dieting continously)
November 2017 blood between bowel moments ( panic)
Went to GP ( 2 WEEKS LATER BECAUSE OF WORK COMMITMENTS) Did DRE AND Bloods,
All were clear but still had colonoscopy secluded and had an appointment in 2weeks time. ( Dec 4th 8am)
Tried to get out of the Colonoscopy as I figured my CRP levels, were ok so can't be too much, but she insisted, so I agreed.
Obviously I spent the next two weeks, googling everything only to realize "I had more symptoms than I had thought".
This then led me to the fact my CRP level was ok, I can rule out colitis and diverticulitis and any other inflammation, when then leads me to nothing but colon cancer,
No sleep for 2 weeks
Have colo under sedation which because I was, so worked up didn't work so I see it for myself on the screen, "tumor" then became histerial in the theater ( surprised they didn't sedate me there and then I was so bad)
Anyway.
GI Surgon arrives once in calmed down to say its, prob cancerous and it's 3cm and very low he can't do the op, and sends me to a specialist in this area,( all I can think of is, my life is over in going to have a bag) not the fact I may die at this point ( think my vanity was, at the forefront) :D
MRI next day
Scan following day
Surgeon
My nerves were shattered waiting!!!!!!
I arrived at the office he has no scan or MRI readings yet
But does, another DRE
YES Mrs kelleher it is very low" 2.5/3 cm AV

But says, he dosent see, why he can't resect and reconnect after...
MUSIC TO MY EARS
I've staged it as, T3 L2b M0
APPARENTLY IT'S, EARLY AND CAUGHT ON TIME!!!!
which I can NOW appreciate.
As, scan and MRI show, clear!!!!!!!
So radiochemo for 5.5 weeks 6/10 weeks break
Check if its shrunk enough
Surgery/ temp stoma
Prob 6 more months, chemo
Reversal

But of course this all comes at a price
Onset early menopause
My viginal wall closing somewhat ( maybe not a bad thing lol I've had 3 kids, go down that canal lol)
20% loss,of Bladder
20% loss Rectal fuction
Skin burns
Chemo ( comes with its own set of problems)

But I feel its, worth the risk,,,, I've read most of ur profiles and no one as low as mine that I can see had a successful reconnection
I've many questions still that i think u will help me with as, I start my journey ( that no one wants, to ride)
Ive done all my crying for the moment I think and I'm not ( let's, get this shit done mode now)
Thanks, for reading I know, it's a bit long
Adele
BTW it seems most of u are American
I'm across the pond in Ireland

Sent from my Huawei Mobile
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Lee
Posts: 6164
Joined: Sun Apr 16, 2006 4:09 pm

Re: SWF, so many uncertainties NOW!!!!

Postby Lee » Mon Jan 01, 2018 3:31 pm

Welcome and sorry for the reason you are here.

I'm throwing this out there just because I'm a 13+ year survivor of rectal cancer. Stage IIIC. Due to radiation, 2/3 of my rectal muscles were destroyed (know that radiation has improved a lot since my treatment). Anyway, due to damage of rectal muscles, I was tied to toilet for hours anytime I ate. The only way to avoid this was to not eat until I was home for the day. Many days that was not until 3-4 in the afternoon. Not much of a life.

I got the bag, it was my decision going into surgery, and for me, it gave me my life back. I can be out and about all day and not need to know where the nearest bathroom is at all times. I can eat what I want and not worry about how certain foods will effect my bowels. Sorry butt after radiation, surgery and chemo, your plumbing may be different than when you started this journey.

Some people with rectal cancer after radiation, surgery and chemo can go back to their lives with minimal issues (bathroom wise). For others they are tied to the house and the toilet for days at a time. Since you are a hairdresser that would not be good for your business. The good news for most of these people that have bathroom issues, daily enemas have been a life saver.

I'm telling you this, I had to raise 2 kids (9 & 11 at diagnoses), the bag was nothing to me. I told my surgeon, she could take all she wanted, just get all the cancer. I believe she succeeded. I don't mind talking about my bag, I figure I'm teaching people about colon cancer (I was a year younger than you when diagnosed). All of my friends know I have a bag, no problems.

When certain people find out about my bag and realize I'm okay with talking about it, the questions can be fast. Many people are interested in the bag for many different issues. One friend may be getting the bag soon due to diverticulities issues. Her PCP approached her about considering it, she shot back I'm already there. Been talking to a friend for some time (me).

My point, check this forum out, make an informed decision. Talk to your surgeon (make sure surgeon is board certified colon rectal surgeon) and see a Ostomy nurse prior to your surgery. Butt check this forum out. There is a wealth of information here.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

Lee
Posts: 6164
Joined: Sun Apr 16, 2006 4:09 pm

Re: SWF, so many uncertainties NOW!!!!

Postby Lee » Mon Jan 01, 2018 3:38 pm

Eleda wrote:BTW it seems most of u are American
I'm across the pond in Ireland

Sent from my Huawei Mobile


This website was created many years ago for a young woman (Molly M) who was roller skating across the USA to raise money and awareness for colon cancer. This website was where people could encourage her and send her well wishes. That humble beginings has turned into this very active forum today.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

DarknessEmbraced
Posts: 3520
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: SWF, so many uncertainties NOW!!!!

Postby DarknessEmbraced » Mon Jan 01, 2018 3:57 pm

Welcome and sorry for the reason you're here!*hugs* I hope your radiation and chemo go well!*hugs*
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! :)

NHMike
Posts: 2505
Joined: Fri Jul 21, 2017 3:43 am

Re: SWF, so many uncertainties NOW!!!!

Postby NHMike » Mon Jan 01, 2018 5:00 pm

Welcome to the board and I must say that you had pretty fast treatment in getting your tests done quickly.

I think that my case has a lot of similarities to yours in terms of staging and treatment. You seem to have things fairly well under control with a treatment plan and a good understanding of the overall treatment plan. I hope that things go well with your treatment plan execution over time.
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

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: SWF, so many uncertainties NOW!!!!

Postby susie0915 » Mon Jan 01, 2018 5:07 pm

One step at a time. My tumor was 5 cm inside anal verge. Very low. Did the chemo/radiaition, surgery, chemo. My surgeon reconnected. As it can be challenging after all is done, in time many do well fairly quickly with bowel movements. Others take longer and there are many meds, diet, therapy, and other options available that will help you regain your quality of life. Your focus now is to get through chemo/radiation. I did pretty well, just painful urination the last couple weeks and burned skin. Took baths that helped and the radiation oncologist gave me lidocaine to numb area when I urinated, so helpful. Was back to normal a couple weeks after. My response was good, surgeon did sigmoidoscopy after all that was left was scar tissue, and a pet scan was negative for cancer even in the rectal area before surgery. Good luck. Don't be afraid to ask doctors for help with side effects.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: SWF, so many uncertainties NOW!!!!

Postby Aqx99 » Mon Jan 01, 2018 6:09 pm

You are in the right place. There are plenty of us here who have been through the treatment you are embarking on. We will do our best to answer your questions as best we can based on our experiences. I am about to end my treatment and begin the monitoring phase. I will be having my ileostomy reversed on January 23rd. My signature details my journey.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

lauragb
Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: SWF, so many uncertainties NOW!!!!

Postby lauragb » Mon Jan 01, 2018 9:54 pm

Hi Eleda,
Sorry you’re having to go through this but glad you have your treatment plan in place and are seeking support. I just wanted to let you know my tumor was as low as yours, a 5 cm tumor so fairly large. My surgeon recommended the temporary ileostomy to me and I followed his advice. I did end up with a clustering (multiple bathroom trips) problem post reversal and so became a daily enema user. I would have considered this a bad outcome prior to going through the whole process but now I consider it ok, I have good quality of life and can eat pretty much what I want. I never did have leakage and my surgeon did a great job with sphincter preservation for a tumor so low. Surgeon skill is key for these low tumors.

I also wanted to reach out to you about the radiation on a low tumor. The side effects can be harsh so it is important for your medical team to supply you with ointment and suggestions for taking care of your skin and tissues proactively. You will not have side effects right away but may start after a couple of weeks. If you have questions, let me know.

Take care and I hope you sail through some of this stuff. Just focus on each stage of treatment as it’s happening. It’s too much to worry about all of it, it’s a process and you will get through it. Good luck!
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: SWF, so many uncertainties NOW!!!!

Postby Eleda » Tue Jan 02, 2018 6:38 am

Thanks for all ur replys, I had a, draft and then lost it ( tech chalanged lol)
Sorry but I'll get all the names wrong for a while,
Mike it's great to see u still hanging n there,,,, I'm n no was Nieive of what's, ahead, but I'm hoping to join ur anniversary at some point ( I'm greedy, 10 years just I ain't enough for me lol)
As for the radiation,,, no one seems to want to talk about it TBH,,, SO I'm expecting the worst ( anything less is a bonus)
I'm confused on the skin burns tho,,, apparently AVENO CREAM, not sure how, broken skin will feel about that :(
Is, the chemo after the surgery usually oral also????
My neo adjuvant is oral ( low dose apparently) so less, side effects 1650mg Zeloda x day
Also was considering having my lady bits removed as precaution ( did u have it at the same time as ur surgery) ???? I'll be n menopause anyway so won't need them.
My surgeon is quite forthcoming with information
His nurse in the other hand isn't.. V
I don't do well when I don't have all the facts!!!!
It is my body after all
Thanks Adele
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

NHMike
Posts: 2505
Joined: Fri Jul 21, 2017 3:43 am

Re: SWF, so many uncertainties NOW!!!!

Postby NHMike » Tue Jan 02, 2018 10:44 am

Eleda wrote:Thanks for all ur replys, I had a, draft and then lost it ( tech chalanged lol)
Sorry but I'll get all the names wrong for a while,
Mike it's great to see u still hanging n there,,,, I'm n no was Nieive of what's, ahead, but I'm hoping to join ur anniversary at some point ( I'm greedy, 10 years just I ain't enough for me lol)
As for the radiation,,, no one seems to want to talk about it TBH,,, SO I'm expecting the worst ( anything less is a bonus)
I'm confused on the skin burns tho,,, apparently AVENO CREAM, not sure how, broken skin will feel about that :(
Is, the chemo after the surgery usually oral also????
My neo adjuvant is oral ( low dose apparently) so less, side effects 1650mg Zeloda x day
Also was considering having my lady bits removed as precaution ( did u have it at the same time as ur surgery) ???? I'll be n menopause anyway so won't need them.
My surgeon is quite forthcoming with information
His nurse in the other hand isn't.. V
I don't do well when I don't have all the facts!!!!
It is my body after all
Thanks Adele


Radiation affects people differently. I had burning and some holes that started about halfway through treatment and I had to use Depend Shields while I had that problem. They went away ten days after treatment. Some people have other effects like the skin gets very thin and some have permanent effects, moreso women than men in my reading. If you have problems with radiation, it's important to speak with your radiation team. This is true of your oncologist as well.

The chemo after surgery, called Adjuvant Chemo, is usually infused 5FU or oral Capecitabine (Xeloda is the brand name) along with Oxaliplatin. Oxaliplatin is infused. I am on the pills and the plan is for 8 cycles of three weeks. On the first day of the cycle, I get an infusion of Oxaliplatin. I also take Xeloda in the morning and evening for 14 days. Then I get a week off.

The typical max plan for infused 5FU is 12 cycles of two weeks per cycle where you get infused with Oxaliplatin and 5FU in a clinical setting. You then take a portable pump home and it runs for about 44 hours and then you return the pump. The Oxaliplatin might be optional for certain Stage 2s.

If you want to see my story so far, and have a lot of time, you can read it at viewtopic.php?f=1&t=58447
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

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: SWF, so many uncertainties NOW!!!!

Postby Eleda » Tue Jan 02, 2018 11:12 am

We have similar situations Mike!!!
I've noticed u are Kras positive
I've asked to be tested and apparently they won't until tumor is, completely removed
Haven't asked about Lynch yet, I'm assuming it's, not positive or they would have mentioned it
But I do have another pylop 15cm away from tumor which worries me ( not the pylop) but the fact theres a pattern,,,,
I know I win worried about stuff that hasn't happened yet but unfortunately it's, my nature
I hate to be blindsided with anything,,,,,
I asked the radio nurse what size, circle of burn I'll have ( ie5cm???)
She said no,, prob all the way to my groin
I'm marked out one on my pubic bone one on my him and one nearly on my thigh, and apparently also from behind,,,
4 way radiation,,,,
Is this what u had????? ( they did say aggressive treatment) so not sure if this is the normal
I dont have anyone close that had had cancer so im at a bit of a , loss
Adele
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

NHMike
Posts: 2505
Joined: Fri Jul 21, 2017 3:43 am

Re: SWF, so many uncertainties NOW!!!!

Postby NHMike » Tue Jan 02, 2018 4:53 pm

I had two marks, lower back, near my sides. I imagine that there are a number of manufacturers of these machines and that they have different systems for marking.

It is nice to know the overall plan but most of the effort, anxiety, and pain and inconvenience is what you're facing in the near-term.

There are so many details to deal with and, most of the time, all of those details are overwhelming so it can be easier if you take things one at a time. My thread contains all of my planning, concerns, anxiety, etc. and you can probably feel all of that reading through it.

In the US, genomic tumor testing isn't part of the normal standard of care so insurance usually doesn't cover it. It may for Stage 4 patients, though: I'm not sure. I think that it's more of a concern if you have one of the aggressive gene mutations like BRAG or KRAS G12V.
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

Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: SWF, so many uncertainties NOW!!!!

Postby Eleda » Tue Jan 02, 2018 7:12 pm

Absolutely Mike but it's near impossible to not worry and the more I Reaserch, the more it worries me lol
Viscous circle, I just hate not having control over this situation,.
My youngest son has cystic fibrosis, so I'm used to treatments, watching trials and reserching Intergrative meds etc!!!!!
So it's like second nature
I rang the Irish cancer Society to ask if its standard procedure and they said only in matasasis, ( makes no sence whatsoever)
But my oncology nurse said all are tested, weather it has Matastasised or not,,,,
What's the point in giving someone one type chemo that's not going to benefit them and wait until it's got worse to check????

Now Because I also have a second polyp, 15cm away from the first, I'm thinking maybe it's Lynch because other's on here don't seem to have any other polyps only the one cancerous one

Sorry for all the question,,,
I'm probably driving u mad
Thanks Adele
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: SWF, so many uncertainties NOW!!!!

Postby Aqx99 » Tue Jan 02, 2018 8:33 pm

Eleda wrote:Thanks for all ur replys, I had a, draft and then lost it ( tech chalanged lol)
Sorry but I'll get all the names wrong for a while,
Mike it's great to see u still hanging n there,,,, I'm n no was Nieive of what's, ahead, but I'm hoping to join ur anniversary at some point ( I'm greedy, 10 years just I ain't enough for me lol)
As for the radiation,,, no one seems to want to talk about it TBH,,, SO I'm expecting the worst ( anything less is a bonus)
I'm confused on the skin burns tho,,, apparently AVENO CREAM, not sure how, broken skin will feel about that :(
Is, the chemo after the surgery usually oral also????
My neo adjuvant is oral ( low dose apparently) so less, side effects 1650mg Zeloda x day
Also was considering having my lady bits removed as precaution ( did u have it at the same time as ur surgery) ???? I'll be n menopause anyway so won't need them.
My surgeon is quite forthcoming with information
His nurse in the other hand isn't.. V
I don't do well when I don't have all the facts!!!!
It is my body after all
Thanks Adele


Radiation did not cause me any major issues. My radiation oncologist had me start using Aquaphor right away to prevent skin issues. I slathered it on with every bathroom visit. The prep for the radiation wasn't too bad. I stripped from the waist down and put a hospital gown on backwards (opening in the front). I laid face down on the table and my radiation oncologist placed one of those large swabs they use at the gynecologist in my vagina. She said she wanted to be able to distinguish it better on the scan. I was marked with three dots, one on each hip and one at the top of my butt crack. The treatments were no big deal. I had to have a full bladder to keep it and my small intestine out of the radiation field. The worst of it has been ongoing tailbone pain since about halfway through the treatments. My radiation oncologist told me she was treating my tailbone because the rectal cancer can recurr there.

I had my ovaries and fallopian tubes removed during my LAR. It was not the original plan. My surgeon said that they "didn't look right," and got my mom's permission to remove them. As it turns out, it was the right call. I ended up being diagnosed with precursor ovarian cancer. I have had urinary leakage ever since my surgery. I think it is a combination of the radiation, surgical damage and menopause.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

Basil
Posts: 270
Joined: Thu Mar 16, 2017 12:33 pm

Re: SWF, so many uncertainties NOW!!!!

Postby Basil » Tue Jan 02, 2018 9:36 pm

Adele, after being diagnosed with colorectal cancer, that M0 is the absolute best news you could get. If you were thinking about avoiding surgery because the tumor is low, so it now before you commit to a plan of treatment.
40 y/o male, kids 8&11
Dx 3/16/17, rectal cancer s3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED
1 year scans - clear
2 year scans - clear


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