Hello please help.

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RaiderGuy27
Posts: 13
Joined: Fri Dec 14, 2018 11:40 am

Hello please help.

Postby RaiderGuy27 » Fri Dec 14, 2018 3:08 pm

I was Diagnosed with Colorectal cancer may 20th 2016 ... I was a 32yr old male. I was overweight 350+ lbs. Life style wasn't to bad. It was a shock to me i went through all the emotions. Scared, angry, depressed, confused. Even more so because i keep this a secret from family and friends. And it was also a big factor in me splitting with my girlfriends of 3 years (her mom died of lung cancer 10 years ago she wasnt a smoker) the only people that know are My Ex, Mom and Brother. After Diagnosis i did radiation and half my chemo treatment. I don't believe in chemo I think it's evil from what i read (conspiracy theory guy) so i only did half treatment. Treatment shrunk the tumor in my lower rectum. I was scheduled do have my rectum removed and have a bag the rest of my life which terrified me. My surgeon had problems with my insurance so i couldn't have surgery. I have no money and im not asking my family for help. I went in a deep depression. My GF at the time kicked me out because she wanted to work on herself which broke me down that much more. So i went a year without seeing a dr. In may this year i started making lifestyle changes i did alot of water fasting to fast my tumor and cancer away. Stopped eating sugar dairy and junk. Im at 229lbs so im down over 120 lbs. I feel better but i still have bloody stools and the tumor. I dont want to have surgery im scared and i dont want to have a bag the rest of my life. I truly feel a raw vegan lifestyle and fasting can defeat cancer but i feel like im left with no choice but to have surgery now. Is there anyone thats going through or went what i went through? I really dont wana have a bag the rest of my life. Im 34 what type of effects will this surgery have on my sex life? I really need people to talk to about all this
Last edited by RaiderGuy27 on Wed Jan 02, 2019 6:57 am, edited 1 time in total.

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Hello please help.

Postby teacher2017 » Sat Dec 15, 2018 2:44 pm

Hi-
So sorry you are going through this. But you are youngg and need to remove this before it spreads and then you will have little options. As for having no money, well, hospital’s handle this all the time. Talk to them. You needed chemo. Stopping was not smart. Educate yourself on your medical options. Cancer is not something you can diet away.

I am grateful that they removed the primary tumor. It still
Managed to spread. Id wear a bag if it meant I’d live another 20 years. Stop relying on holistic treatments. They can be deadly. Nevermind your sex life. You won’t be alive to have sex if you don’t handle this ASAP. Please seek medical treatments and talk to others. Talk to your family or they’ll bury you with unanswered questions. Is that fair to them?

For therapy, the Blue Hope Nation and Colontown on Facebook are so helpful. They saved me. Good luck!
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Re: Hello please help.

Postby hiker » Sat Dec 15, 2018 4:02 pm

I hate to sound insensitive or uncaring, but you're a man and I'm a man so I'm gonna tell you one man to another...if you don't get the cancer out of your body, you're going to die. There's no sugar coating this. Nothing you eat or don't eat is going to kill the cancer. You need the surgery, you need the chemo, and if a bag is what you end up with then so be it - you'll have to live with it. But from what I've read from other folks, a bag can be better than having your life constantly interrupted by your bowels.

I wish you the best and hope you do what needs to be done to get you healthy.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Hello please help.

Postby Lee » Sat Dec 15, 2018 4:22 pm

RaiderGuy27 wrote: . . . I trurly feel a raw vegan lifestyle and fasting can defeat cancer but i feel like i left with no chouce to have surgery. Is there anyone thats going through or went what i went through? I really dont wana have a bag the rest of my life. Im 34 wgat type of effects will this sirgery have on my sex life? I really need people to talk to about all this


Yes, I KNEW of 2 people who tried this approach. One was diagnosed a stage I, the other a stage II. Stage I has a high success rate, about 95%+. This friend passed away many years ago. She choice vegan and supplements rather than surgery. She ended up in the ER, stage IV, with a 100% blockage, emergency surgery, and a colostomy bag. She past away a few months later. She was skin and bones at that point.

FYI, weight loss is a symptom of colon cancer.

The stage II had surgery, butt choice no chemo, against medical advice. She too died.

I was stage III almost 15 years ago. I did radiation, surgery, & chemo. And I do have a permanent colostomy bag. My decision prior to surgery, best decision I ever made. I am NED today, was told a few years back that I was cured. That bag gave me my life back. I can be out and about and not worry where the nearest bathroom is. I can eat what I want and not worry how certain food will effect me.

Are you in the USA? If yes, have you looked into Medicaid?

There is another forum for people who have bags. You really should check it out. The United Ostomy Association of America.

https://www.uoaa.org

Yes you do need people you can talk too. Is there a reason you have not told your friends? Some of mine were true life savers. I know I would not have made it with out certain friends and family. With cancer, you do find out who your true friends are.


Please get help somewhere.

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!

Puckhog
Posts: 2
Joined: Sat Dec 15, 2018 4:50 pm

Re: Hello please help.

Postby Puckhog » Sat Dec 15, 2018 5:19 pm

Hey RaiderGuy,

Hope I'm not too insensitive with my reply but, you do realize that medicine advances everyday, right? What's impossible to treat today is the standard of care tomorrow. I've had a "bag" for a year now and it's annoying at first but you learn to live with it. There are tons of us having an ostomy bag and we live a normal life, doing what everyone else is doing. If you think chemo is "evil", then consider your cancer as your doomsday...you're essentially living on borrowed time and payments will be due, no exceptions. I went through very heavy chemo treatments just to shrink that little devil to a size I could have it removed. Unfortunately, it had spread to my bladder and suddenly I was considered as stage 4. Luckily, they didn't discover it until I was completely opened up on the table and they removed a large portion of the bladder as well. I say "luckily" because if they had seen the spread on the cancer via the 6 various MRI's PET and CT scans, the treatment would have been different and I may not have been here today. Now, I'm cancerfree and I can start looking forward again. Sure, I have various side effects from the treatment, such as peripheral neuropathy, changes in taste, etc. but, I will learn to live with them as well. So get your behind back to the hospital and the chemo or radiation treatment and get on with your life before you have no option at all. Also, stop the ridiculous "natural" treatments. It's all a bunch of crap. People have friggin died for you to be able to have MEDICAL treatment available to you. Good luck to you and I hope you do the right thing

del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Hello please help.

Postby del » Sun Dec 16, 2018 2:00 am

I would reiterate what everyone else has said. I don't mean to sound rude, but you really need to face up to this. Improving your diet will reduce your risk of developing cancer in the future (not just bowel cancer, but many others too), but it will not cure your existing cancer. You need to get proper treatment, and the longer you delay it, the lower your chance of beating this.

Talking to family & friends really helped me and I found a lot of support in unexpected places. You may have some personal reasons for keeping your diagnosis a secret, but I would recommend you ask your doctors about getting some counselling. It can really help you to cope with everything.

I would suggest you get a second opinion if you haven’t already. Different surgeons may offer you different options. I was told I may need a permanent bag, but my surgeon was able to reconnect me. Having said that, having a bag is not all that bad. I had one for 9 months and could’ve easily lived with having one permanently. It's a small price to pay for saving your life.

Given your age, I would also suggest your other family members get colonoscopies and that you ask about getting genetic testing done, if you haven't already.
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
2021 - 5 years of clean scopes/scans/bloods

RaiderGuy27
Posts: 13
Joined: Fri Dec 14, 2018 11:40 am

Re: Hello please help.

Postby RaiderGuy27 » Mon Dec 17, 2018 4:15 am

Ive got a bunch of opinions. They all say the tumor is to low in my rectum to save it. I do have medical. I dont want to tell anyone because i dont want sympathy or for them to be stressed. I have surgery scheduled for January 4th im just hella scared. This is the biggest decision ive ever made in my life. Do you guys believe my weight loss is from the cancer? I was doing al ok r of water fasting and dieting. I feel so much better when i fast then when i eat a regular diet especially meat. I just sent in genetic testing last week. Ive just been so stressed as of late.

User avatar
Maggie Nell
Posts: 1150
Joined: Wed May 27, 2015 1:57 am
Location: Central Highlands, Victoria, Oz

Re: Hello please help.

Postby Maggie Nell » Mon Dec 17, 2018 10:07 am

RaiderGuy27 wrote: I truly feel a raw vegan lifestyle and fasting can defeat cancer but i feel like i left with no chouce to have surgery. Is there anyone thats going through or went what i went through? I really dont wana have a bag the rest of my life. Im 34 wgat type of effects will this sirgery have on my sex life? I really need people to talk to about all this


Being a person who trained in naturopathy in the 1980s and was running with all those vegan ideas, I can understand how attractive
they are - and the cemeteries are full of true believers.

You might like to read the journey of vilca11
memberlist.php?mode=viewprofile&u=91246

and that of roscoe douglas
memberlist.php?mode=viewprofile&u=99854

Click on search user's posts.

It's great that you've dropped weight and cleaned up your diet, you'll recover stronger from surgery. Bottom line is: are you
prepared to roll the dice with longevity to prove somebody else's idea about nutritional therapies that currently
remain scientifically unproven.

You seem to be rocking mental health issues, that's a double-whammy with a devastating diagnosis. Get in touch with
a psychoncology clinic in your region and discuss your concerns and the barriers you have with finances and being
estranged from the expected support networks of family, friends and life partner. It's a tough row you are trying to
hoe on your own dude.


Remy’s woes befall many after cancer
Depression can hit as survivors adjust

By Stephen Smith, Globe Staff | August 14, 2009

When the bodacious voice of the Red Sox, Jerry Remy, disclosed this week that a wave of depression had swallowed him up in the months after lung cancer surgery, it was a story that rang with sad familiarity to psychologists like Karen Fasciano.

To an outsider, such despair in a cancer survivor would seem surprising: Surely the patient must be triumphal, having won a victory over a potentially lethal disease. But that is not what Fasciano witnesses in her office at Dana-Farber Cancer Institute.

There, she sees patients who are bereft and bewildered. During the months of chemotherapy and radiation, their lives had structure, support, and a singular, energizing focus: defeating cancer. But with treatment finished, some patients suddenly find themselves alone, exhausted, and fixated on how cancer has transformed their lives. And they are consumed by the potential that it could return.

“When you have cancer, often the most essential element is saving your life,’’ said Fasciano, who devotes a substantial amount of her time to helping patients who have finished cancer treatment. “But when people are done with their medical treatment, they experience the existential and emotional adjustment issues related to having had a life-threatening illness.

“Life is uncertain for all of us,’’ she said, “but people who’ve just gone through cancer treatment have a new awareness of that uncertainty.’’

On Wednesday night, from the familiar terrain of Fenway Park, Remy first spoke about his descent into depression. In a telephone interview last night, he described days and nights spent in a state of forlorn emptiness.

“You didn’t want to get out of bed,’’ Remy said, his voice strong, his words plainspoken. “The first thing you thought when you woke up was ‘another lousy day is ahead of me.’ I had no desire to do anything.’’

In November, he underwent surgery to remove a lung tumor, avoiding the chemotherapy and radiation that is so often the regimen of lung cancer patients. A ferocious infection in January weakened him, but otherwise, his recovery went well until the Red Sox made their first foray to the West Coast in April. That is when his mood plunged and he could not drag himself to the ballpark.

“I was a guy who always took pride in being there every day, whether I was sick or not,’’ Remy said. “I couldn’t answer the bell that one night. I really think that’s what triggered it.’’

Mary K. Hughes, a clinical nurse specialist in the psychiatry department at M.D. Anderson Cancer Center in Houston, said recent cancer survivors can easily become overwhelmed if they return to work and life’s other routines too soon.

“They can’t do what they used to do,’’ she said. “That starts them thinking: ‘What if this is forever? What if I’m never going to be able to work?’ And then all those fears start rising.’’

There’s debate among mental health specialists about just how many cancer patients and cancer survivors experience that crash.

Dr. William Pirl of the Massachusetts General Hospital Cancer Center said doctors used to believe that up to 25 percent of cancer patients experienced major depressive disorder, the sort of depression that is far more than a passing bout of the blues. More recent reviews, he said, suggest that a truer figure is 10 percent.

Still, that rate fails to capture patients who have milder forms of the condition, particularly those stricken with something called an adjustment disorder. As the name implies, those patients experience transient depression as they adjust to being diagnosed with cancer.

Patients are also vulnerable to depression midway through treatment, when the deleterious effects of chemotherapy and radiation become more apparent, said Pirl, who studies the treatment of depression in lung cancer patients.

“They’re feeling poorly, and they don’t know whether the treatment is working or not,’’ said Pirl, clinical director of Mass. General’s psychiatric oncology service. “They’re left in this ambiguous zone of not knowing whether their investment is going to pay off and thinking that maybe they’re going through treatment for nothing.’’

There’s also reason to suspect that the powerful treatments used to vanquish cancer may light the fuse of depression, specialists said. The drugs can start a cascade of metabolic and hormonal changes and cause inflammation thought to contribute to the condition.

The Institute of Medicine, an independent body that advises Congress on health affairs, issued a report in 2007 calling on cancer specialists to do a better job recognizing the psychological impacts of the disease and its treatment. Pirl conducted a national survey of oncologists a few years back and found that only two-thirds asked patients how they were coping.

When depression is identified, doctors sometimes prescribe antidepressants and refer patients to counseling.

Remy said last night that his doctors have tweaked his medication so that “they’ve got me going on the right track.’’

Knowing that his absence from the broadcast booth would invite speculation, Remy said he felt it was important to talk about dealing with depression.

“I’m not embarrassed to say so,’’ Remy said. “People go through it all the time. It’s probably best to tell the truth, and that’s what I did. And if it helps people, that’s good, too.’’

Stephen Smith can be reached at stsmith@globe.com.OUR world is worth saving
Question everything. Become your own Advocate.
When we find a cure for one cancer it will lead to a cure for ALL cancer
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
Stage II CRC, no adjuvant chemo required.

rickker20
Posts: 119
Joined: Sat Apr 17, 2010 1:55 pm
Location: Houston Texas

Re: Hello please help.

Postby rickker20 » Mon Dec 17, 2018 1:06 pm

The biggest decision you made in your life? If you don't get cancer out you will not have a life to make decisions.
Rectal Cancer 6/09
Stage 1 T2
9 days of 5fu
2 days of Avastin
5 weeks of Radiation
Lar 9/09 failed
Pull thru surgery 10/09
Rectum Removel,38 lymph nodes remove all cancer free
6 weeks of 5fu & Folfox
Bag reversal 6/10 & Port remove
Cancer free

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Hello please help.

Postby MissMolly » Mon Dec 17, 2018 2:54 pm

RaiderGuy:
I have a permanent ileostomy from an intestine that literally unzipped due to frail tissue integrity. I have shared space with a stoma on my abdomen and an ostomy pouch for 6 years.

There is a initial period of adjustment post-surgery, obviously. There is a learning curve to understanding how to care for a stoma and how to apply and change a pouch. Emotions will ebb and flow as you feel.

But I can honestly tell you that having an ostomy, at least for me, is simply not a big deal.

It has become as routine as wearing my bifocals to which to see better. Care for my ostomy is not complicated. It takes about 10 minutes a day to care for my skin. I empty the pouch with the same frequency that I use the restroom to urinate.

With a permanent colostomy, you will have the option of using single, one-time use disposable pouches. After a bowel movement, you will simply detach the pouch, fold and place in a zip-lock bag or similar, toss into the regular trash, and apply a fresh clean pouch. You will not be walking about with a pouch of poo on your abdomen. You will be able to detach a pouch after a bowel movement and replace with a new one, which will be empty for the majority of the day. Most people with a colostomy find that their bowel pattern matches their pre-surgery regularity. If you had a bowel pattern of a bowel movement once a day, that may well be your frequency after recovery and healing (say, 8-10 months).

I share this with you to hopefully remove an incorrect image that you may have of an ostomy pouch full of poo that takes away from your personal dignity. It will not.

Ostomy pouching options are many and varied. Products are of high quality and modern in design and in materials used. My ostomy pouch is absolutely odor free and noise-free. There is no crinkling sound of plastic. The ostomy seal with the skin is 100% air tight. Odor free. The seal is amazingly resilient. You can swim, ride a bike, ski, play golf and basketball, practice yoga, even sleep on your belly if you like. Yes, you will experience a wafer leak on occasion . . . It can be initially upsetting . . . But you will learn to take it in stride, clean up, and go on with life.

People of all ages have ostomies. Ostomies are not limited to the elderly with incontinence. Young adults with Chron’s disease or ulcerative colitis often have need for an ileostomy. Women with extensive endometriosis may have need for an ostomy if extraneous tissue invades the intestine; a person with pelvic injuries due to an automobile accident may have need for an ostomy.

Your ostomy will not be noticeable to anyone in looking at your outward appearance. I am a petite little gal, 5’2” and 80 pounds, and no one would be the wiser in looking at me.

Ostomy pouches come in a wide range of sizes. The image of a long “bag” dangling down to your knee is a falsehood. I wear a small mini-pouch that is 4 inches in diameter. It lies completely flat against my abdomen with a low profile. The wafer has elastic polymers that enable it to move with my body. I practice yoga daily. And never feel restricted by my ostomy pouch. During the day, I honestly give scant notice to my ostomy. It is a part of me. Just as is my nose or fingers a part of me.

The United Ostomy Association of America has an on-Line support group similar to this forum. The UOAA forum was a life-line to me during my early healing. I learned more from the members of the UOAA forum then I did from any ostomy nurse or nurse educator. People with ostomies sharing experiences and tips, with a dose of friendship and humor. People helping people.

http://www.uoaa.org

Go to the “support forum” tab to find the online discussion.

The UOAA site also offers informative PDFs on a wide range of ostomy topics. Free to read and download.

Do not hesitate to visit the UOAA support forum. Read, browse through the threads and posts, join as feels comfortable to you. Know that you will be among friends at the UOAA forum. I am a regular poster. I believe in “paying it forward” and helping newcomers with the kindness and inclusion that was so graciously bestowed to me.

Know that there is a good quality of life to be had with an ostomy.

Sending you healing and wishes for well-being,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Hello please help.

Postby Lee » Mon Dec 17, 2018 5:06 pm

RaiderGuy27 wrote: . . . They all say the tumor is to low in my rectum to save it. I do have medical. I dont want to tell anyone because i dont want sympathy or for them to be stressed. I have surgery scheduled for January 4th im just hella scared. This is the biggest decision ive ever made in my life. Do you guys believe my weight loss is from the cancer? I was doing al ok r of water fasting and dieting. I feel so much better when i fast then when i eat a regular diet especially meat. I just sent in genetic testing last week. Ive just been so stressed as of late.


If your tumor is that low, yes you REALLY want that colostomy bag. Your other choice is living on the toilet 20+ times a day. Believe me, I've been down that road, not fun! :twisted: Radiation destroyed most of my rectal muscles, I was tied to the toilet for several hours after I would eat a meal. My only solution was to not eat until I was home for the day, Many times that was not until 3 or 4 in the afternoon.

My worst day, waking up bright and early and rushing to the toilet, did not make it, accident on floor and down my leg. I sat on the toilet for a good 20 mins. Thought I was done. Get in shower, have yet another accident, there. Clean up as best I could, only to run to my other bathroom, again did not make it. Sat on that toilet for another 20 mins. Get back into shower, then spend a good hour cleaning up all my accidents.

When I learned from the surgeon about my rectal muscles, I knew why I was having accidents.

I would have taken that path in life if I had to, I had 2 kids I needed to raise. As it turned out, my surgeon sent me to an ostomy nurse, wanted my husband to also attend and that is where we learned what a colostomy bag was. I walked away from that meeting knowing I wanted the bag, I had my husband full support. As he put it, you can get you life back with that bag.

Today, when I do have a bowel movement, I go from firm stools to liquid stools. If I had not taken that bag, I probably would be house bound most days.
As it is, I can be out and about and not know where the nearest bathroom is at all times. I just bring a few supplies with me, and change on my schedule. I told my surgeon she had carte blanc to take all she wanted, just get all the cancer. I believe she succeeded,

Yes, there is a learning curve in the beginning, but over all it's easy. For me, the battle was not the bag, it was the cancer. If I blow a wafer, I'm looking at what I did wrong. Most of my friends know I have the bag, mainly because I want to educate. I few yrs back, a friend suffered from diverticulosis, she was asking me question about my colostomy. When she had been in the hospital for about the 3rd time in less than a yr for the diverticulosis, her Dr brought up possibly getting a colostomy. She responded to her Dr, already on board thanks to a friend who has one.

Have you been staged yet?

Can you join a cancer support grp? I would really recommend talking to a few close friend. Believe me cancer has affected many people and their lives, they understand what you are going through and you will find a lot of support. And I can not stress this enough, you will find out who your true friends are.

Best advice I can give you, following your surgery, you get out of that hospital bed and you walk, walk, walk, those hospital halls. Yes it hurts in the beginning, butt you will be on major pain med. Butt all that walking ready does help speed up the healing process. When I had my surgery, another women had her's too. She was only walking a few times a day, me 20 + a day.

They kicked me out of the hospital early, this other women was still struggling. Bring a wrap around robe, easier to get in and out of as your back end will be exposed. Also comfortable slippers, nothing cheap.

Believe me, we've all walked in your shoes. Glad to hear your are going ahead with the surgery. That is the best path to NED (No Evidence Detected). As the surgeon or hospital talked to you about what to expect?

Again, see if there is a local cancer support grp if nothing else.

Good luck, know that we are here for you,

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!

RaiderGuy27
Posts: 13
Joined: Fri Dec 14, 2018 11:40 am

Re: Hello please help.

Postby RaiderGuy27 » Sat Jan 12, 2019 2:15 am

Well i had the surgery on the 4th. Still in the hospital as of today the 12th even tho they told me it would be a 3-7 day recovery. Ended up being stage 1b no lymph nodes had cancer. The drs want me to walk but everytime i walk there is an insane amount of blood leaking. It freaks me and the nurses out. The surgeon said its normal and its old stale blood not new blood is this normal?

Also my body looks deformed :( . Ive always been overweight but it looked well proportioned is this just all the iv fluid and swelling from the surgery? Kind of looks like something out of a horror movie. Even tho i got the good news that they got all the cancer and it didnt spread to any lymph nodes. I regret having the surgery. This is so hard mentally.

erins
Posts: 44
Joined: Sun May 27, 2018 12:41 pm

Re: Hello please help.

Postby erins » Sat Jan 12, 2019 3:33 am

First off I am so happy for your staging results—seriously, that’s GREAT news!

I had the “what do you mean old blood?” Freakout too—it turned out to be normal (or at least, not a bad thing) as they said, but it was terrifying. My tumor was higher up, so I didn’t leak as much as have to scramble to toilet with no margin for error, but the ‘old blood’ did go away after a day or two. I definitely had swelling from the surgery as well—it eventually went back to normal, but took a while—I’m very thin and ended up looking like I was pregnant, which led to some pretty funny conversations. (

Take it one day at a time, walk as much as you can and celebrate the fact that you’re on your way to being healthier!
38 yr old female
Rectal bleeding for 1 month—>
5/4/18 colonoscopy found mass in sigmoid colon
5/21/18 LAR
stage 2a, 0/17 lymph, clean margins
T3N0M0 G1
LVI neg, PNI neg, MSS
9/21/18 CEA 0.8
11/16/18 CEA 0.8 & CT clear
12/7/18 iron infusion
2/1/18 iron improved, CEA stable.

del
Posts: 119
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Hello please help.

Postby del » Sat Jan 12, 2019 6:32 am

That is great news that there was no spread! Hang in there and things will get better. And listen to your doctors when they say you need to be walking - you really do not want to get DVT after your surgery.
Male, 33 @ dx, stage 1 RC (T1N0M0 mod. diff. 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-11 - Ileostomy reversal
2018-10 - Another DVT & PE
2021 - 5 years of clean scopes/scans/bloods

RaiderGuy27
Posts: 13
Joined: Fri Dec 14, 2018 11:40 am

Re: Hello please help.

Postby RaiderGuy27 » Sun Jan 13, 2019 12:40 am

del wrote:That is great news that there was no spread! Hang in there and things will get better. And listen to your doctors when they say you need to be walking - you really do not want to get DVT after your surgery.

Whats a pvt? I almost got a blod clot in my lunch i was in icu for a day and a half 3 days after surgery. Im so mentally distraught the way my body looks right now :(

Also my balls are so swollen like crazy. Im afraid i wont be able to get an erection after i heal.


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