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Thread: Diagnosed with colon cancer, 25 years old

  1. #1
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    Diagnosed with colon cancer, 25 years old

    Damn it

    I had so many symptoms for the longest time, bleeding in my feces for a good year. I thought, 'nah, not me!". Cancer does NOT run in my family, I self diagnosed anal fissures and went about my life. Every few months Id think I was dying from constipation and cramps.. these cramps would come and go every half hour or so, last only about 5-10 seconds, for about 12 hours (did I mention I thought I was gonna die.. on a scale of one to ten.. id have to say 9 and childbirth being 10). FINALLY went to see a dr.. embarrassment held me back for so long. She was gentle and referred me to a female surgeon, which took three months. Pain and blood was getting worse.. oh my god the blood! Finally made it to the consult and she booked me for a flex sig two months down the road. More blood... more pain. Finally made it to the sig, and two mins in she had colleagues on the phone and I had an emergency colonoscopy two days later. The biopsy from the flex sig came back positive for cancer, as did the markers and the colonoscopy biopsy. F*CK

    Now Im waiting on mri, ultra sounds, getting another sig in three days to measure location, then Im guessing once all the tests and stuff come back, Ill know what stage and what type of surgery Ill be getting.

    My question for you..

    Stage one, does this mean possibly no chemo or radiation? Im hoping for stage one.. Im hoping for minimum surgery, obviously. So instead of scaring myself silly with the 'ifs' and 'hows' of a spreading cancer.. let me wrap my head around best case scenerio first.

    Anyone with experience in any stage and any treatment.. help a girl out? Ill appreciate and respect any advice given. Im in college, live on my own.. will I need to take time off and move out of my apt for stage one?

  2. #2
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    sweets, so sorry about the cancer diagnosis, i will include a url for a website
    http://www.cancer.gov/cancertopics/p.../Patient/page5
    this will tell you about the stages and the treatments
    not all websites are truthful, i usually pick the gov ones
    don't over read or stress, hopefully the dr stages this soon and gets you information and plan on the treatment
    always go for the best case scenario, you can always make a difference plan of attack.
    will pray for the best possible news for you. God bless

  3. #3
    Moderator Senior User Fourlegsgood's Avatar
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    Sweets, really sorry that you appear to have joined our club.

    The link that mojo gave is useful but if you are anything like I was when I found out about my rectal cancer you will find it hard to take in things because there is just so much to come to terms with.

    The first news you will get about the staging is after the scan. Basically that will tell if it has spread into any other organs - if it has then that will generally be known as stage 4.

    If you get the all clear from the scan (I had a CT scan), ie no spread to other organs, then I was told that they find it difficult to give any real information on whether it is stage 1 (contained within the wall of the colon), 2 (communicating with blood vessels) or 3 (spread to 1 or more lymph glands) until after the operation.

    Unfortunately it is the waiting for information that is almost the hardest part. I know that my mind tended to oscillate between anticipating the worst and hoping for the best.

    The good thing is that you are young and hopefully fit and that will give you the best chance to fight this thing no matter what the staging.

    Hoping for the best and my thoughts are with you.

    Nick
    Last edited by Fourlegsgood; 10-10-2011 at 05:32 PM.

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    Thank you, yes Im young and strong, Ive gone thru the crying and feeling sorry for myself, Ive worried myself over the possibilities and now, I just go day by day and tell myself Im gonna be alright.

    I had a ct scan the same day as my first sig scope, it showed some spots on m liver but both the gastroenterologist and my surgeon seemed sure the spots on my liver could just be veins. Of course the MRI will give a better detail so Im waiting on that before freaking out. The waaaaait is horrrrrrible! Ive lost a few lbs, but thats gotta be just stress. My appetite is alright, it takes less to fill me, but Im always hungry so Im always eating

    Thank you for the link, I have of course been searching online for a year on and off.. scaring myself, and convincing myself its just this or that.. not cancer. Ive had time to come to terms with the fact there is something seriously wrong with me.. no one bleeds that much and fools themselves into thinking its normal. Another question.. how much blood is safe to lose? I have bm about five times a day now.. little ones, big ones.. all different, liquid to hard, but all covered and mixed with blood. I get dizzy and weak. Stress or should I be mentioning this to my dr? Out of all the drs Ive seen, none of them wanted to look at my poop (lol, all embarrassment gone, can you tell?)

    The laproscopy surgery, my surgeon is asking a collegue of hers to assist, whats the healing period time for that. I need to decide soon if Im giving my notice or not

  5. #5
    Senior User Buzzard's Avatar
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    Quote Originally Posted by Sweets View Post
    Damn it



    Stage one, does this mean possibly no chemo or radiation? Im hoping for stage one.. Im hoping for minimum surgery, obviously. So instead of scaring myself silly with the 'ifs' and 'hows' of a spreading cancer.. let me wrap my head around best case scenerio first.

    Anyone with experience in any stage and any treatment.. help a girl out? Ill appreciate and respect any advice given. Im in college, live on my own.. will I need to take time off and move out of my apt for stage one?
    First and foremost, I am NOT a doctor. Your doctor can and will give you better advice than me or anyone on an internet forum. But since you asked....In my experience, radiation and chemo are almost certain for just about any type of cancer. I know that sucks, but radiation shrinks the tumor and after surgery, chemo cleans up (we hope) any little cancer cells running around in your body. SOME types of cancer do not require radiation/chemo, but I don't know that any of these commonly occur in the colon/rectum. For example, on my sig line, you will notice that I had a carcinoid tumor in my lung several years back. Totally different beastie than the adnocarcinoma the found in my backside a few years later, and no radiation or chemo. Until the rectal tumor came along, I joked that I had the best kind of cancer to get if you just HAVE to get cancer. Me and my big mouth, eh?
    The good news is that as long as they are talking surgery, they are going for the cure. Surgery is how you cure colorectal cancer, radiation and chemo only buy time. It's if they tell you surgery is not contemplated that you get to worry, because that means the cancer has spread and the horse is out of the barn, and you are now playing in the big leagues. It's rarely the first tumor that gets you, it's the stinking recurrence, because that usually comes back in more than one spot.
    Good luck. Hoping that you have a successful course of treatment the next few months. If I have any other advice, it's to go do something you really, really like to do. That both cheers you up and gets your mind off your troubles. For me, when I get all tensed up, I drive up the canyon, park at the end of the road, and start walking. The view from the mountaintop or at least a high pass tends to lend a little perspective. IMHO, YMMV.
    Last edited by Buzzard; 10-11-2011 at 05:47 AM. Reason: mispelled word
    DX with Lung Carcinoid Tumor 12/04
    Double Lobectomy 3/05
    DX with Rectal Cancer 12/26/07 Merry Christmas!
    Radiation/Chemo 1/08
    Rectal Resection 3/08, permanent colostomy. Stage 2C
    More chemo 5/08
    Chemo fries bone marrow, 9 days in hospital isolation 7/08
    Recurrence confirmed in pelvic region 12/09
    Tumor radiated with Cyberknife treatment 3/10
    Recurrence/metastasis in pelvis/abdomen 11/10
    Xeloda/Avastin 12/10 to 01/13
    Progression to lungs found 1/13
    Erbitux 01/13 to 01/14
    Acute renal failure, six days in hospital, all chemo stopped for now, 11/13
    Restarted Erbitux, lower dose 12/13
    Kidney function dips again, chemo suspended again. 2/14
    New chemo regimen of low-dose Irrenotecan started 4/14.
    Further progression into lungs, chemo halted, referred to Huntsman Cancer Center for possible clinical trials.
    Sounds like a lot of fun, doesn't it?

  6. #6
    Moderator Senior User Fourlegsgood's Avatar
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    Sweets, I'm not sure which country you are in. Here in the UK I went through the National Health Service and right from the first diagnosis they had a support team that was dedicated to answering the sort of questions you are asking. The great thing was that they could look at my file and give me advice based on their experience of how long it would take to recover etc. I was viewed as being young at age 56 and consistently beat their predictions so you too could take your own view based in what advice you get.

    I had full open surgery with part of my rectum and half of my colon being removed. I was in hospital for 6 days then went home. For the first week at home I was fully mobile but spent a lot of time on the sofa watching tv. After 2 weeks I was doing my work from home on the computer and telephone, after 4 weeks I was driving and after 6 weeks I was back riding my horses. Of course there were various visits to the doctor for stitches removal and back to the hospital for review and I needed help with that.

    My tumour was staged as 2 after the surgery and I am now on 6 months of capcitabine chemo which are pills that I take at home. It was 2 weeks after the operation when I got the results of the staging because it takes that time for the biopsy results (well it takes 10 days then they reviewed my case with the team before telephoning with the results). After the operation the surgeon will be able to say whether the tumour was taken out cleanly (ie they think they got it all) but I was told that they cant say much more than that from just looking at it. I went back to the hospital after 4 weeks for a review and it was at that meeting that they discussed with me whether chemo was appropriate. I started the chemo after 6 weeks when my body was pretty well recovered.

    The side effects of my chemo vary from person to person but I am more or less carrying on as normal with no noticeable side effects. Here in the UK I would say that generally no chemo after the operation with stage 1 and it depends from surgeon to surgeon whether they give chemo for stage 2. Stage 3 will always have chemo post op. Depending on the reults of your scan and the size of the tumour, some surgeons will give chemo before the operation to shrink the tumour and make it easier for them to get it out cleanly.

    Your journey will be different as we all are but hopefully with your operation being quicker to recover from and you being young and fit you will beat what I did.

    I hope this helps but I would emphasize that I suggest that your first port of call for your questions is to the support team that are looking after you.

    Nick
    Last edited by Fourlegsgood; 10-11-2011 at 07:02 AM.

  7. #7
    Moderator Senior User Fourlegsgood's Avatar
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    Sweets, I forgot to say that right from the word go my surgeon said that if you were told that you had to have cancer then he would pick colon cancer because of how treatable and (hopefully) curable it is.

    Nick

  8. #8
    Senior User swisecar's Avatar
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    Sweets,

    Just wanted you to know that you are not alone. I was diagnosed at age 26. The only family cancer history I have is a maternal aunt with breast cancer and my own personal history. This forum has been a great source of support for me. I hope that you will also find support here. Knoxville, TN has a cancer community that has weekly and monthly activities such as arts and crafts and cooking classes for anyone affected by cancer. The cancer community also has group meetings and a staff psychologist. Chances are that your city also has similar programs. The cancer community has helped me along the way. Even though I have a wonderful support network, sometimes I needed to talk to other cancer survivors. Keep us updated when you learn more about your situation. I hope that through sharing our experiences we can all help each other to keep living.

    Sarah
    May 1988 acute lymphoblastic leukemia (2 yrs chemo & radiation)
    Sept 2009 papillary thyroid cancer (thyroid removal & radioactive iodine)
    Sept 2009 colon cancer stage IIIC (removal of sigmoid colon & resection)
    Oct 2009-May 2010 FOLFOX6
    July 2010 stage IV colon cancer, irinotecan & avastin
    Dec 2010-July 2011 avastin maintenance
    Sept 2011 tumor removal involving small bowel resections
    Nov 2011-April 2012 resume irinotecan
    May 29 2012 begin radiation treatments 15 total
    current age: 28

  9. #9
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    I also wanted to let you know you are not alone, I was diagnosed this year at 32, stage 3.

    One thing you may want to ask as they don't radiate young women too much, ask questions about fertility if you need to do chemo and radiation. The first radiologist couldn't answer my questions, but went I went to Dana Farber they told me the radiation would ruin my uterus. So even if I moved my ovaries, I would not be able to carry a child. Hopefully your tumor is at a very early stage and you don't have to worry about that, but just wanted to give you a heads up on what I was told.

  10. #10
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    Wow.. thank you for your advice. I would never have thought of side effects and damage. Ive had one MRI, Im getting another one on monday, then an endoscope on wednesday. By then, my drs will have a better idea of what stage Im in. Im hoping and praying its early, but Ive had symptoms for a few years and strong symptoms for a year. I try not to think of it.. I found a support group that meets once a week for colorectal cancer.. Im really looking forward to that. I cry alot.. but Im always alone.. I sure could use a hug.

    Thanks everyone for being supportive.. Ill update when I find out results from all these tests Im getting.

  11. #11
    Top User DulcimerGal's Avatar
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    Sweets,

    You must mention the blood loss to your Docs if you haven't already.
    My tumor was silent...it presented by suddenly bleeding A LOT in the middle of the night... My husband rushed me to the emergency room. I was never so scared in my life. I had worked at my job for 16 yrs with only two sick days, I was really healthy!

    They gave me two pints of blood and did a colonoscopy. The next day I was told it was cancer.
    I've learned now to tell my Doc every little detail. Please do this too!

    Prayers and good thoughts for you..
    Cheers
    DulcimerGal
    Rectal Cancer diagnosed Valentines Day 2008 - stage 3
    Finished 6 weeks of radiation and chemo 4/23/08
    Surgery to remove tumor - June 18th 2008
    Colostomy Reversal August 20th 2008
    Chemotherapy 5 months (Xeloda) finished Christmas 2008
    Local recurrence found May 2011
    Permanent colostomy and salvage APR surgery June 3rd 2011
    Stage 3C - 4 of 12 lymph nodes involved
    Finished 12 treatments of FOLFOX 6 - January 17th 2012 - Happy Dance!
    March 2012 - clean CAT Scan
    August 2012 - Cancer moves to stage 4
    CAT shows cancer cells implanted in pelvis/abdomen
    September - PET shows lung lesion 1.4 x 1 cm
    October - begin sessions of Folfiri.3 - Avastin, Irotecan, 5fu
    February 2013 - tumors shrinking, continuing biweekly chemo
    April 2013 finished all 12 Folfiri treatments, scan shows only lung lesions
    May - October Blessed chemo break!
    October 2013, scan shows more growth in pelvis and lungs
    Continue with biweekly Folfiri.3 - Avastin, Irotecan, leucovorin, 5fu
    April 2014 CAT scan shows tumors in liver
    June 2014 More tumor growth, stop Irinotecan cocktail after two years
    June 2014 Begin Regorafenib (Stivarga)

  12. #12
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    FINALLY got staged. I have stage 3 colon cancer. Im not impressed with my first oncologist consult, is radiation really that bad for women?? Do they really have no solid evidence that radiation actually helps? I was told today if I choose radiation, Ill be infertile and be put into early menopause. There is also a possibility of my vagina walls fusing? Im 25.. cmon. Really? Is that the best they can do? I have a consult with a chemo oncologist and Im hoping the side effects arnt so fucking ridiculous.

    Anyone wanna help me out with advice? Id like to have function of my vagina... Ill wear a colostomy bag for the rest of my life.. but please dont take sex away too

  13. #13
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    Sweets,
    Sorry your here but frankly you are in the right place for practical advice and help.
    You've got a lot going on at the moment, I've monitored your posts and the responses which have all given good sound advice but not copied in so far.
    Your staged at 3 so was I, after surgery restaged to 2b, with no chemotherapy recommended (I hope my team were right about this).
    if I can suggest open up to our medical team, lay everything in plain English about your concerns and fears. in return ask them to give you best options again in plain english and not medical speak.
    From those options you can have a better understanding which may allow you to make a decision on the best treatment pathway for yourself.
    I learned don't just accept what the medics say at face value, I wanted every option explaining in plain language the up and downsides on everything.
    Ask them the questions you have raised on here, not holding anything back, full details in their faces and tell them you expect exactly the same in return.
    It's better if you write down the questions and better still if you can take someone with you to note the answers you get as it's easy to get into information overload and you don't remember something significant.
    Ask directly why they propose a radiotherapy approach and do they feel 100% certain it is necessary as opposed to chemotherapy.
    You are young and with a good medical team with a clear treatment pathway, you should have everything going for you.
    I hope some of our other members can chip in with more answers to your last questions as I simply can't answer.
    My very best wishes for a good outcome
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    27th Anaestesia work up prior to surgery on Nov3.
    Hopefully no biggy a couple of hours only.
    That will do me just fine.
    Wait, watch and learn (Not too much I hope)
    Stop grumbling Baz, your alive and kicking and too much to do in my life.
    And the ski plans are back on. Whoopee.

    Motto
    Do what I love doing, when I can until I can't.

  14. #14
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    i am sorry for you

    i was 34 when i was diagnosed in jun 2011 with stage 3 rectal cancer and with one positive linfnod ,my doctor told me that i will have a permanent bag but after chemotherapy and radiation i went back to my surgeon he said that the tumor had shrinked and i may not have permanent bag so after one month i had my surgery on 09/ 20 i am now with a temporary bag .my surgeon send the tumor to the lab and biopsy the result come negative they didn't find cancer on them .and he told me to do an other 4 month of chemotherapy .in my case radiation was good help for me and the oncologist told me if i wana freeze my sperm cause he said maybe i will not have kids in the future. i think everything it's going in good way for me so i am not thinking about it now.damaging your veg it is not 100% maybe it's 10 % so you have to think positive .you will be all right.

  15. #15
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    Hi Sweets,
    Maybe I missed it but did you mention the area of your Colon where the Cancer is? I'm wondering if that's why Radiation has been recommended. Mine was the Sigmoid Colon and was also Stage 3. I had 3 Lymph nodes affected. They did resection surgery last year Laproscopically and I didn't need a bag at all. I was standing within 24 hours of surgery and was on a Plane to Pittsburgh for Christmas within about a week.
    I only had 2 Chemo treatments which made me so sick that I said "screw this"! I've been cancer-free since!
    I tell you all this because NO TWO CASES ARE THE SAME. No matter what you read online or anywhere else, always keep that in mind. It also helps to have Strong Faith. I look at it this way: Will Cancer take my life? Probably. When? Only God knows. Does it help to worry about it? NO! Am I going to let ANYONE here on Earth decide my fate? ABSOLUTELY NOT! I've changed my diet to include more fresh fruits and vegetables, I'm "Juicing" and I'm all around living a healthier lifestyle. It's so important to be the one in control of your treatment.

    I'm 48 years young and I think I have a Lot more living to do...

    John

  16. #16
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    Ive refused chemo and radiation. I cancelled my surgery and Im just taking some time to myself. Ive changed my diet.. Im juicing and feeling so much better mentally and physically. Im not sure what Im going to do, Im looking into alternatives right now. I want kids one day, I like having full function of my body. I do not accept the conventional methods if they will do long term harm to my body. I have cancer, cancer does not have me

  17. #17
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    Sweets,
    Phewww your decision is a big one in not having any treatment or even surgery, however it is your decision which I totally must disagree with but respect your decision.
    I understand you want children some day, however and there is no other way to put this.
    Without surgery or chemotherapy you will die.
    I'm sure our members on here will agree that there are ZERO Alternative treatments available to prevent the progression of any type of cancer.
    You say you you have cancer it doesn't have you, but with no treatment it will have you, it's something you cannot walk away from.
    Please I beg you to look at your decision as without treatment there will only be one outcome.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    27th Anaestesia work up prior to surgery on Nov3.
    Hopefully no biggy a couple of hours only.
    That will do me just fine.
    Wait, watch and learn (Not too much I hope)
    Stop grumbling Baz, your alive and kicking and too much to do in my life.
    And the ski plans are back on. Whoopee.

    Motto
    Do what I love doing, when I can until I can't.

  18. #18
    Moderator Senior User Fourlegsgood's Avatar
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    Sweets,

    Wow, what a decision. We are all entitled to do what we want with our lives but quite simply I am stunned.

    I do not know you except for these messages on the Forum but in a funny kind of way I care for you and I do not want you to die. You have a treatable disease and are young which improves the odds even more for you being able to fight your way through this thing. By all means take a bit of time to think things through and to get fit but there really is no other way to beat this thing if you choose to opt out of surgery and the realated treatments.

    The surgery is basically needed to get rid of the source of the cancer which is intent on spreading itself throughout the rest of your body. Your cancer is relatively early and you have this chance to stop it speading and live a long life. Leave it in there and it will spread as sure as eggs is eggs. Do not pretend that things will stay the same and it will go away by itself or through alternative treatment. You might feel great now but that will not stay the same if you do nothing (I am lumping alternative treatments in with doing nothing as it will have the same end result).

    We all have felt very much as if the carpet has been pulled out from under our lives by being diagnosed with cancer. When I was first diagnosed and did not know my staging I had to face the real possibility that it might be advanced and time would be short. I made peace with myself at that thought and was prepared for it but speaking as someone who has come out through the other side of the operation I now want to live even more so than ever before.

    You say, "I have cancer, cancer does not have me". Unfortunately if you let the little sucker get away with it then it WILL have you. Do not let it win. Do whatever it takes to punch it on the nose and get it to go away. Please do not think that you have the option of not having treatment in order to have kids. You need to be alive to have kids.

    Sorry to lay it on a bit thick but you are lucky that the cancer is only stage 3. You have the chance to beat it where others don't have that because it has spread too far. If you leave it in there it will spread and then you won't have the same options that you do now.

    Like Barry, I beg you to reconsider.

    Nick
    Age 1/2 way to 118. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping after 8 weeks and first competition 10 weeks after operation. July 2012, CT scan clear. June 2014, CT scan clear.

  19. #19
    Administrator Top User Didee's Avatar
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    Even though I am from a different board I too beg you to reconsider.
    Plain truth is that you will die without conventional treatment.
    I know that you will come here and we will have to help you through your death even though you do not feel this at the moment.
    I respect that you have made your decisions. Please look up steve jobs on the net. The founder of apple did as you are doing and came to regret it.

    We are here for you when that time comes. We will have tears in our eyes when yet another bites the dust trying to use alternatives.

    Hugs
    Di
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

    CancerForums User Policy

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    Out of all the things I have lost, I miss my mind the most.

  20. #20
    Moderator Senior User Fourlegsgood's Avatar
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    Quote Originally Posted by Didee View Post
    Please look up steve jobs on the net. The founder of apple did as you are doing and came to regret it.
    Sweets, as Didee suggests try googling "Steve Jobs' Cancer Treatment Regrets - Forbes" for a starter.

    Nick
    Age 1/2 way to 118. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping after 8 weeks and first competition 10 weeks after operation. July 2012, CT scan clear. June 2014, CT scan clear.

 
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