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Diagnosed With Rectal cancer

STS
Posts: 16
Joined: Jul 2016

I am 43, M. Diagnosed with Rectal cancer 2 weeks ago ang surgery was done around 10 days ago. I am with Ileostomy bag now. Will be doing PET Scan on monday. After that , I will be refered to an Oncologist for Chemo and Radio... I am depressed and down. Are there any Rectal cancer stage 3 or 4 survivors here. What is your best advise for me?

danker
Posts: 1204
Joined: Apr 2012

I had a ileostomy bag for 6 weeks. Then had it reversed and my colon attached as in normal plumbing. Colonoscopy following Spring showed me NED(no evedenve of disease). Been NED for 6 yrs now!! Good luck to you!

STS
Posts: 16
Joined: Jul 2016

Did you go for Chemo or Radio ? How is your life style now ?

STS
Posts: 16
Joined: Jul 2016

Thank You Danker. Did you go through Chemo and Radio ?

danker
Posts: 1204
Joined: Apr 2012

Look up my csn space and you w[ll see my complete history.

lp1964's picture
lp1964
Posts: 1238
Joined: Jun 2013

I'm sorry you have to deal with this. 3 years ago I was 48 when diagnosed with rectal cancer veRay close to the anus. I am NED now with permanent colostomy that has its challenges. But I'm happy to report that even though cancer is an insanely tough and scary journey and you will never be the old yourself, there is good life after the treatment. I'm healthy, happy and optimistic, because I decided to be and got lucky. 

Keep asking soecific questions and all the best to you. 

Laz.

STS
Posts: 16
Joined: Jul 2016

Thank You LP. How is your food Intake now. Are you taking any food supplements? Yours was stage what? Did the cancer metastated or localised?

ellend
Posts: 89
Joined: Apr 2016

I am also sorry you have to deal with this. I was diagnosed with Stage II cancer in December. I had 5 weeks of chemo/radiation prior to surgery with the goal of shrinking the tumor prior to surgery. The side effects of treatment are not very pleasant, but I think keeping a positive attitude helps result in a better outcome. I have been fortunate my results from the chemo/radiation and surgery have been very good. No lymph node involvement and containment of the tumor. I still have a temporary iliostomy. Although the tumor was close to the anal verge, there was enough tissue left to reconnect.

Wishing you all the best.Ellen

STS
Posts: 16
Joined: Jul 2016

Dear Ellend, 

Mine surgey was done and on bag, I may need to wait for the bag to be removed before chemo or radio. Is it dangerous to wait?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I was diagnosed with colon/rectal cancer Dec 31, 2013. One doctor calls it colon cancer and another calls it rectal cancer so I'm not sure which it actually is. I had an illeostomy first, then chemo and radiation to try to shrink the tumour before surgery and then the surgery. I had some additonal issues that are not common so I won't get into that. I had some lymph node involvement so I was a stage three. I had the cancer metastisize to one lung earlier this year and had that blasted out with radiation and am told it's now gone.

You asked for advice. I'm not sure what to say other than eat well and take care of yourself but don't go nuts trying to eat a certain way. You'll likely be inundated with advice from people. Take what sounds legitimate and discard the rest. It's annoying but people are just trying to help. If you have any questions, no matter how silly or trivial they seem, ask them here. You'll get the best advice from people who have actually lived through it and who have already done the research. Remember that muc of what you'll read on line is old information or is not relevant to your situation. Unfortunately, cancer is different for everyone and the treatments also work differently for everyone. Few people react the same for everything. This is why it's going to be so hard to 'find the cure for cancer'. Each cancer requires it's own treatments and varying treatments even for the same cancer for each person. Also, a treatment can work at one point but then not work later, or the opposite can happen and the doctor will advise trying something again that didn't work in the past. 

There are no sure things. And never allow a dotor to give you a time frame of how long you may or may not live. Nobody can know that. Like someone said on here before, unless your doctor is going to come to your house and shoot you, they have no idea.

They are making strides all the time in cancer research and we are living longer. At the same time, my grandmother had colon cancer in the 1950's when she was in her fifties and she died at 84 from kidney disease, not cancer. And she was healthy up until just before the last time she went in the hospital. She'd just been back from Australia four months before. We live in Canada. She was healthy enough that she had the option of having a kidney transplant but she refused it because she felt that if one were available it should go to a young person. 

So try not to worry too much. Stress and negativity are one of the things that really do affect the body's ability to fight cancer as it affects the body's immune system in a negative way. We're here for you. You can do this. We are all a testament to that.

Jan

STS
Posts: 16
Joined: Jul 2016

Thank You Jan, for your comprenhesive reply. Are you taking any food supplements?

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

No, I'm not. I do take vitamin B and D every day. The vitamin B is because I'm low otherwise and the D is because it doesn't hurt to have it and there is some idea that it may help fight cancer. Other than that I just try to eat a well balanced diet and I've never been a person who ate things like processed foods or pastries or crap like that so of course I don't now. One thing to watch with the ostomy is being careful to chew foods like oranges well because they can cause a blockage if you're not careful. That being said, I eat whatever I want with the ostomy including popcorn.

Jan

STS
Posts: 16
Joined: Jul 2016

I am a sorry . A typo error. My age is 53 and not 43.

 

STS
Posts: 16
Joined: Jul 2016

I am from Malaysia. I am a Pharmacist and for the last 10 years i was propogating good life style , balance diet, Excercise and good supplements. I was excersing 3-4 days in a week at Gym, very careful with diet ( I dont smoke and drink ) . I was helping many cancer patients with supplements and life style modification. But when i was diagnosed, I could not take it and was having sleepless nights for the past few days. 

Right now, rectum is removed and with ileostomy bag and Biopsy confirmed cancer has spread in Lymph nodes. Will be doing PET on Monday and will get the results on Tuesady. That is giving me more stress.

Can I continue with supplements which boost Immune System. Now I am taking Transfer Factors. Are there any other good supplements. I willstill follow the Oncologist's advise after I get my PET report.

Thank You . 

STS
Posts: 16
Joined: Jul 2016

Little correction. My age is 53. Typo Error.

vtspa6
Posts: 172
Joined: Aug 2015

So sorry that you have cancer.  For the first 3 months you will probably be in a fog, at least that is how my husband (who has stage 4 cancer) and I were.  I just remember many tests done, colostomy surgery, scans, mri's.  Our calendar was full of Dr' appts.  It has been a year this month and he is still doing chemo.

lp1964's picture
lp1964
Posts: 1238
Joined: Jun 2013

My rectal cancer did not spread to the lymph nodes or to other organs, however it was a size of a walnut and broke through the wall Into the surrounding tissue So it was between stage 2-3. I used to take supplements but they make me feel weird and give me a tummy ache so I quit. 

So sounds like you have a temporary ileostomy on the right side. 

Laz

beaumontdave's picture
beaumontdave
Posts: 1015
Joined: Aug 2013

Sounds like you were doing everything right and still got this stuff, welcome to the blog. I never took supplements, I take a multi-vitamin cause I'm older [58], and a baby aspirin because it's the one thing well studied that showed a relationship with it's use and lower reoccurances of crc. Can't take it during chemo and maybe radiation, because of the bleeding effect, but otherwise it's said to lessen chances of stroke or heart attack as well. And it's cheap. I fought stress with occasional Xanax [.5mg] and melatonin for sleep. Benadryl's even stronger, but I wake up groggy from it, and many don't get any effect from either. That's all I got for advice on supplements, good luck on the scan Monday....................Dave

STS
Posts: 16
Joined: Jul 2016

After receive the bombshell from my Surgeon, he refered me to an Oncologist in a neighbouring country. I did a PET Scan. PET Scan showed 3 tiny dots at Lungs, measured less than 2mm each. ( Removed my rectum on 4th of July ) Since they were too small he was not so sure whether they were cancer or not. But since Biopsy report showed 9 out of 24 lymph nodes had cancer trace, the oncologist confirmed mine is Stage 4. When I asked about the prognosis, straight to my face he told me I have no chance but I should concentrate little longer and try settle my bills and children's education.

I was devasted. 

Anybody Can give me some positive testimonials please.

lp1964's picture
lp1964
Posts: 1238
Joined: Jun 2013

Many people here were given the same news as you have and I'm sure they will chime in. Every case and every individual is different. Some hopeful looking cases turn into tough ones some hopeless cases miraculously improve. (See Phil64 recently). Yes, get your life in order that we all should do after a certain age. Prepare for the worst but work towards and hope for the best. 

one mindset that helped me through my journey was this: today you are the same person as you were before you got your diagnosis. Today you have the same skills, personality, drive, work, family and friends than before you just happen to have cancer. Today you can still do the same things you could do before but you have a new task now: to fight and beat cancer. Research, learn and fight like hell. This fight will challenge you and your family greatly, but you had huge challenges before and this is your current one.

All the best for you and we are here to support you. 

Laz

STS
Posts: 16
Joined: Jul 2016

Thanks LP...a great message indeed.

 

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JanJan63
Posts: 2482
Joined: Sep 2014

I'm sorry STS but I disagree with your doctors. Unless you don't have access to treatments such as various chemos, radiation, ablation, or several other ways of dealing with it, I don't see why they're telling you to get your affairs in order. Doing so is always a good thing because anyone can be gone at any time and thinking we'll live forever is just being blind. Aren't they offering you any options for treatment? I don't know what it's like in your country but I don't think you'd have been told there's no hope here in Canada. The lymph nodes being involved is scary but chemo should deal with widespread rogue cancer cells. Radiation can take care of the spots on your lung. Efforts should be made. What are your options?

Jan

 

STS
Posts: 16
Joined: Jul 2016

I am starting my oral and IV chemo on Sunday. Oncologist has suggested i need to go 8 cycles of IV chemo every 3 weeks together wth oral chemo. After completion of chemo, i might go 25 cycles of radiation.

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JanJan63
Posts: 2482
Joined: Sep 2014

Well, I wish you the best with the treatments. We all have different things that our doctors try for various reasons. It's entirely possible that your body will react well to the treatments and they will change their prognosis. Or it won't worek well and they'll try something else that will make a huge positive difference. I hope you can prove the doctors wrong.

I will always have hope no matter what they tell me. I had a severe medical situation a year and a half ago- blood clot to my lung which caused cardiac arrests, a stroke, kidney failure, etc.- and the doctors were asking my husband and daughter of they wanted to revive me because they felt I'd never be the same and would probably be in a nursing home forever totally dependant on caregivers. Instead I not only survived- the ICU doctors called it a mircale- but I'm exactly the same mentally and almost back to normal physically after spending 4 months in the hospital learning how to do everything because I came out of the coma paralyzed. So I do not accept it when doctors say there is no hope for someone. Our bodies can do miraculous things. Never, ever give up, that's all I know.

So when the doctors say there's not much they can do, tell yourself you'll show them. You'll survive and they'll have to eat their words. God bless.

Jan  

STS
Posts: 16
Joined: Jul 2016

Thank You Very Much Jane

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lizard44
Posts: 409
Joined: Apr 2015

I'm  71, and was diagnosed with stage 4 rectal  cancer  with a 1.5cm metastatic tumor and some sub-centimeter  spots in the liver in May 2015. I haven't had any surgery yet, since the  rectal surgeon was concerned that the liver  tumor presented more of a problem than the rectal tumor. He felt  there was a good chance chemo and radiation could shrink the rectal tumor and if it didn't we could do surgery later, after the liver had been taken care of.  So I received  8 rounds of Folfox plus Avastin,  during which time the rectal tumor  began to slough off and shrink so that it no longer caused me   a  problem and the liver tumor shrank down to 1 cm. I then received 28 rounds of radiation with 5-FU, which  shrank  the rectal tumor so that it  was no longer visible on a scan, but the liver tumor grew to  3 x 2.4 cm. The oncologist switched me to 4 rounds of Bevacizumab, fluoracil, & levoleucovorin, but the liver tumor continued to  grow another 18%, so she switched me to Erbitux plus Irinotecan and I 've now had six treatments. My liver tumor, which is very close to the diaphragm, has now decreased in size  to 1.5 cm, plus there are two small lesions under 1 cm which may or may not be  tumors. I met with a liver surgeon   a couple of days ago and we are  going  ahead with an ablation on all three liver spots, but no date has been set yet. My port was not functioning  properly when I went for chemo this week, so  my oncologist decided to delay chemo  temporarily so  we could go ahead with the ablation in a few  weeks.   A decision has not yet been made on  the rectal tumor,  pending results of a PET scan I had earlier this week. The last two CT scans showed that the  rectal tumor  was not  visible, so I'm hoping the radiation and chemo zapped it for now.

I'm not a long-term survivor, but I've survived just over a year with a really good quality of life, with few side effects and I'm very pleased with that.  My oncologist has been very staightforward in  stating that  she doesn't use the word "cure" when   talking about stage 4, but that with new treatments  the cancer can be managed much like other chronic disease, and different people react differently to the treatment.  Some don't respond well at all while others have  defied the odds and  survived for many years after a stage 4 diagnois. I don't know how much longer I'll be around, but   really none of us do anyway- we could get hit by a bus or something tomorrow, so I've decided to just get on with living  as best I can with the cancer rather than spending a lot of time worrying about dying from it. If your oncologist  gives off an aura of  doom or makes you feel depressed all the time, I would seriously  consider asking  for another  oncologist.

As Laz noted, it's always a good idea to  have your affairs in order, and to prepare for the worst, but hope and work  towards the best. Ask a lot of questions,   learn all you can and  when you  have serious concerns about your proposed treatment, ask  for a second opinion.  I wish you the best of luck with your treatments and  hope  you are able to show your oncologist that he was  wrong and you  do have a chance for quite a few more years. 

beaumontdave's picture
beaumontdave
Posts: 1015
Joined: Aug 2013

I don't understand how telling someone they have "no chance" of beating a diagnosis, [when many are surviving worse diagnoses cancer-free for long periods or keeping it at bay], is doing any kind of service, especially in the beginning when everything is such a shock. I'd follow the program, and look to find an onc with a bit more heart to him. To me, it's a lousy, but understandable, question that's going to get a lousy, ballpark answer. Give yourself some time and treatment, then you'll come to know where your at............................Dave

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lizard44
Posts: 409
Joined: Apr 2015

I received the same message from Ghest as is posted here and just blocked this person or robot or whatever it/he/she is.

 

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CSN_Lena
Posts: 31
Joined: Nov 2013

Hi lizard,

The message that you received from Ghest appears to be a scam. Please do not reply to the personal email address that they listed or share any personal information with them.  While we have taken measures to protect the site from scams and abuse, it still occurs occasionally.  Our apologies for the inconvenience

Thanks for understanding,

Lena
CSN Support Team

ellend
Posts: 89
Joined: Apr 2016

I don't think there is a downside to waiting to get the iliostomy reversed, at least I hope not. I had some trouble with mine, but it seems to have settled down. I couldn't wait much longer to start chemo or it would lose its effectiveness apparently.

I met a man while getting infused that said he was stage 4. I think he was 8 treatments in and said he has had a great response. His primary tumor has shrunk and at least some of his METs are gone. Chemo has been his only treatment so far. Not sure if he and the doctor have additional plans. He said his was found during his 10 yr colonoscopy, he didn't have other symptoms.

There is always hope, I think it really hrlps that  you lived a healthy lifestyle before your diagnosis. I had changd my diet as soon as I found out to a mostly raw food diet, cutting out many processed foods. I had a good response to treatment. I also think finding ways to reduce stress and keeping a positive outlook helps.

Best of luck,

Ellen

ThomasH's picture
ThomasH
Posts: 100
Joined: Jun 2016

I'm a fellow recent diagnosed stage 4, also with an ileostomy. I received both in April. I have mets to my lymph nodes, and in my peritonial tissue, but all mine at this point are too small to detect on either PET or CT scans. The only reason I know they are there is that the surgeon who removed the tumor from my ileum and gave me my ileostomy found those while he was at it. Thanks goodness for that!

My onc has never mentioned the word prognosis to me even once. He has said that they consider stage 4 palliative, not curative, however I'm scheduled for a HIPEK procedure in January once I'm done my 12 chemo treatments. The surgeon who will be doing the HIPEK says that they consider that treatment to be potentially curative. There are no guarantees here, but I choose take that as something positive and hopeful.

I guess what I mean to leave you with on that count is that you really need to believe that there is hope for you. Having that positive outlook can definitely affect your outcome, and if nothing else, being hopeful feels a lot better than trying to live without hope. There are long term survivors on here, and any one of us could become a member of that group. It does happen.

As to suppliments, I think everyone has their own journey on that score. For myself, what I take daily is 8grams of curcumin, 8 grams of ginger, 2000Mg B17 (yes I know that one has polar support in both directions, but I'm not having any negative side effects from it so why not), 800mg Cimetadine (supposed to help prevent metastasis after surgery, but if you are a pharmacist you probably already know that), digestive enzymes, Milk thistle, and a nice selection of good old vitamins including 10,000 IU of vitamin D and the full B complex.

Every day I drink the juice from about 2.5 pounds of carrots, with assorted other veggies because there is a lot of good dense nutrition in there.

Do I think that the suppliments are going to just fix me? No, I'm a realist. I have read enough studies on Pubmed (and you must be careful to weed out the good from the bad even there) to believe that there is some benefit, and that what I'm doing can support or enhance the chemo I'm taking. If I can make the chemo work even 10% better, why would I not want that 10%? As I said, it is a personal journey, and for every me doing the suppliments, there will be another person who doesn't believe in them at all, and that is OK. That is something you will have to make your own choices about, and I wish you success in whatever that choice is.

I completely agree, get your affairs in order just because it is a good idea, and one less thing for you to stress over. Stressing out over the "What ifs" is really hard to avoid, but healing is so much easier if you can let that go and focus on what is actually within your control.

Good luck to you STS.

Thomas

rgamatko
Posts: 1
Joined: Jun 2016

Hi STS, my husband was diagnosed with sigmoid colon cancer on 4/22/2016. It was a rather large tumor which they surgically removed on 5/16/2016. He also has an iliostomy bag. We have learned to deal with the bag but not without having had one or two disasters with it.  PET scan done a month after surgery revealed 2 lymph nodes were affected as well. He is now on IV chemo cocktail of anti nausea med, steriods, benydryl, Erbitux followed by Folfox. It is a 6 hour long chemo session with a 46 hour drip of Fluorouracil (Part of Folfox). The monday after the pump is disconnected he goes for a Neulasta injection, which helps increase white blood cell production. We go for the 6 hour chemo sessions every other week, up to 12 sessions. In regard to side effects, hes experienced a strong sensitivty to cold (can't drink cold beverages, or touch anything cold) and an acne like rash on his face and back.

I am a little confused with you saying they are treating you with radiation as well. It was my understanding that colorectal cancer is generally not treated with radiation. Are they attempting to shrink your tumor with radiation prior to surgery? 

Prior to his surgery, my husband lost over 50 lbs. I am happy to say he's gained about 20 back. His spirits are good, all things considered and we remain very positive. This is something that I  can not stress enough, keep focused, ask questions and remain positive. You must have the utmost faith in your doctors. We are pretty much at the beginning of our battle here as we just finished our 4th chemo session today. We don't know what the future holds but we know we will do whatever is necessary and never give up the fight.

If I were you I most definitely would have had a second opinion. I would not take one doctors recommendation of getting "my affairs in order" especially since that was prior to any treatment. I wish you the best of luck and please feel free to reach out to me should you have any questions or need an ear.

Warm regards,

Robin

sashinka
Posts: 13
Joined: Aug 2016

Ihave a clear fluid with some blood after my fol fox rounds. Is this common?

sashinka
Posts: 13
Joined: Aug 2016

Any stories or experiences with medical marijuana?

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Trubrit
Posts: 5009
Joined: Jan 2013

You need to open a new thread, as it is not appropriate to start a new subject in someone elses thread. 

If you are having trouble opening this page  http://csn.cancer.org/forum/128  or opening a new thread, please email CSN and they will be happy to help you. 

STS
Posts: 16
Joined: Jul 2016

Dear Friends, What is your opinion on CTC test methodolgy ? I was told it is more effecting in detecting cancer cells compare to PET? Have anybody in our group done the test?

rose70
Posts: 1
Joined: Aug 2016

Hi everyone..just found this site although I live in Australia I cant seem to find anything here. I had cervical cancer 13 years ago ..treated with chemo and radiation and have just been diagnosed with rectal cancer. I am still in the staging process mri in 2 days...had colonoscopy...am feeling devastated and waiting for test and results is so stressful....just reading your stories is reassuring. Thanks..and will keep updating...Frown

beaumontdave's picture
beaumontdave
Posts: 1015
Joined: Aug 2013

Hi Rose70, I'll bet it's cooler Down Under than here in California, keep reading and updating your story, it's what we do here.................................Dave

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