I am 27 years old and was diagnosed 2 1/2 weeks ago with rectal cancer.
I have had bleeding for years, but when I mentioned it to my doctors, was told that it was a hemorrhoid, and was prescribed procto-foam. After my father was diagnosed with colon cancer 2 years ago, and with my own symptoms getting progressively worse, I finally went to a gastroentologist. My colonoscopy showed that I had a tumor, so I went to a surgeon who did a sonogram. My cancer is Stage II.
The surgeon suggested a few options to me, and my main question right now is, should I have chemo/radiation combined with surgery, or just have the surgery. My current surgeon suggested I get my whole colon removed. He was fairly confident he could save my sphincter, but he said that chemo/radiation would likely increase the chances of that, though it would weaken my muscle. However, it would have the unfortunate side effect of making me infertile, which isn't that appealing to me, as I am getting married next year. But of course, both my future husband and I would prefer that I am as healthy as possible before anything else!
I'm seeing my second opinion next week, but I was hoping for a few educated opinions, or personal stories. Thank you so much for your help!
Maybe on and off for 5 years, perhaps a bit more. I talked to doctors about it twice (several years apart), but because I was so young and healthy, they didn't seem overly concerned about it. It was only after my father was diagnosed that I decided to get a colonoscopy no matter what. I have a fairly typical case of HNPCC when you look at my family history.
The reason why I ask is because I'm 27 too and have had bleeding on and off for 3 years and I've been deathly afraid that I may have colo-rectal cancer at an advanced stage. And like you I've been told I was too young, blah, blah, blah.
However, I'm pretty sure stage II is still highly curable.
I am a female, who was diagnosed with rectal cancer, at barely 30. I was STAGE 1 and had internal and external radiation. Like you, I had to face the difficult decision to have the treatment and face infertility. I didn't have to have surgery or chemo, since my cancer didn't invade the rectal wall, but after my internal and external radiation, I did go into menopause right away. Have you thought about freezing any of your eggs? I didn't, but you might ask about it. There is also something called an ovary lift, where the surgeon attempts to lift your ovaries, out of the way of the future radiaion site. It's not always successful. Generally, chemo./radiation combo. is the primary treatment when any cancerous polyp(s) have invaded the colon or rectal wall, along with a surgical resection, especially if any there is any lymph node involvement. With just surgery alone, there is the concern about "rogue" cancer cells. In fact, I think someone recently wrote in a thread about only having a resection and 3 years later or so, her cancer was back, in the same resection area. If I can find that old thread, I'll let you know. I'm hoping she might respond. I'd definitely get a second opinion and ask to have a copy of all your pathology reports. Only have a colorectal surgeon perform your surgery, especially since the site is close to your sphincter muscle, and a colorectal oncologist to guide your treatment. Have you had a CTscan yet, as well as bloodwork and a lung x-ray and a rectal ultrasound, which helps determine any lymph node involvement? Stage 2 is VERY curable. Many people, I think, will reply to your thread, who are at different stages and can provide more info. I just wanted to reach out and send some empathy your way. Like you, my doctor downplayed my initial bleeding, saying it was probably hemmerhoids. There are a few people here, who have been diagnosed early in life. This is a wonderful board for support and info. I'll reply again later, to any of your other posts. I know too well the shock you are feeling....
I am the person WMK mentioned who had surgery 3 years ago, but no chemo or radiotherapy, and now it has come back at the resection point. If I had had radiotherapy or Chemo as well, I feel sure the cancer would not have come back a second time.I am now waiting for a date to have more surgery and I need to find out if I will need any other treatment. Having said that, I am older than you and have children, so I can understand your reluctance to have any treatment that would leave you infertile. The most important thing though is your health. Stage 2 is curable.
WMK is right, you should get as much information as you can. Ask lots of questions and find out if there are other options. Make use of this board. There are a lot of people who have a wealth of knowledge to share, and are more than happy to support you through it.
I was diagnosed with stage 2 cancer of the bowel.. (with an infection/perforation) but higher up.. colon/rectal.. which is easier than rectal. I had 18" of colon removed and now undergoing chemo... Origianlly they thought of radiation as well but now theyre hoping the chemo will do the clean up... btw Im 44.. so the kids thing wasnt even a worry as I have my two kids already...
Im sorry to hear your diagnosis.. but chin up.. Its only stage 2 whcih is highly treatable..
Goodluck and keep us posted.
Take care of you
Because my cancer is genetic (both my father and grandfather on my dad's side had colon cancer), my current doctor thinks that I should remove my colon entirely, and hopefully (with the remaining sphincter muscle) create a "replacement" out of my small intestine. He said that otherwise it was too risky due to my age that my cancer would come back. To put it simplictically, with no colon, I can't get genetic colon cancer. He said if he didn't remove it, he would suggest a colonoscopy twice a year.
As far as they know now, there is no lymph node involvement (they showed up on my ct scan, but not my sonogram), and if it showed up later, it would be chemo/radiation without question. But do you think that I'm foolish now to hope they can just do surgery?
I think I'd definitely get a 2nd opinion, even it you have great confidence in the present doctor. I don't know enough about not having any colon at all and how that affects your quality of life. You might post, asking who had their entire colon removed speciafically. Also, colon and rectal cancer are separate cancers. Taking the colon out doesn't necessarily protect you from rectal cancer, if it is classified as rectal cancer. Is the cancer close to the rectum? You mentioned your sphincter muscle maybe being compromised, which implies it's near the rectum. I can understand you not wanting radiation, to protect your ovaries. One option is just getting chemo. How sure are they about their being no lymph node involvement? That's the BIG Question to be clear on. I have colorectal cancer on my paternal side and my doctor's stongly advised me to have radiaiton, even at Stage 1, but my cancer was within the rectum. A colon resection wasn't an option. I'd ask your doctor how often the entire colon is removed. How will that affect your digestive system? Will you need a permanent colostomy? The theory about rogue cancer cells is that there is no garauntee that none haven't entered your lymph node system, without spreading yet. Also, even though colorectal cancer runs in my family, aftertime, I only need to have screening tests every 2-3 years. Initially your doctors would watch you annually, but, overtime, you'd see them less freqently. And even if you do have your entire colon remove, you should still be screened every 2-3 years, in the rectal area, with a lower scope, to make sure it hasn't spread elsewhere.
I'm going to be seeing my second opinion next week. It's at a very well respected cancer center and the surgeon Iím going to see has a good reputation.
The tumor is in my rectum, maybe 4 or 5 cm. from the sphincter. The doctor said the sonogram is 85% accurate regarding lymph node involvement, even though they won't know for certain until they remove the tumor. If the colon is removed, assuming they save the sphincter, I would not have to have a colostomy (well, illiostomy), but of course it would never really be the same.
I really appreciate your commenting. I have some new questions to ask now! This has all been so surreal, thank you all for your good thoughts. Mine are with you.
Since the tumor is in your rectum, please ask your doctor, if removing your entire colon protects you from further reoccurence of rectal cancer. Colon cancer and rectal cancer are separate cancers. It sounds like you have rectal cancer. Remember to write down a list of questions beforehand, because you go into the office and often your mind goes blank, because of the anxiety. Also, if possible, take a trusting person with you. That way, 2 sets of ears are hearing all the suggestions and then you have someone to talk it over with right afterwards. Keep us posted. Lots of empathy...
Just make sure that you have the Best doctor. I am glad you are getting a 2nd doctor view. I had the best doctors and had 1/2 of my colon removed 2 weeks ago. I loved my surgen. He is the best in the field. It has'nt been a walk in the park but not as bad as I feared.
I agree with Lizard... I had/ whatever rectal cancer 31 y/o dx, male, dx Stage 3C 1.5 years ago. Make sure you go to a colorectal specialist. Also, I'm sorry, I didn't read your whole story yet, but they may want to irradiate prior to surgery to shrink the tumor to allow for a better outcome. It's really important that you see a colorectal specialist so they are familiar with protocol... not just a surgeon who wants to cut in.
Best of luck,
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To update, I have decided to go with my second opinion doctor(s). He wants just to remove the rectum, and leave my colon alone for now, which is a lesser life-style change, so fine by me. He did a second ultrasound, and he determined that it was stage 3 cancer, not stage 2 the way the other doctor thought, which is a little worse, as I will definately need radiation pre-surgery now.
I'm meeting with the radiologist and oncologist the first week of August to discuss my treatment options, and in the meantime I'm calling fertility doctors trying to figure out my options. It's so frustrating, because most fertility treatments are not covered by insurance. I found fertilehope.com, which seems to be a good resource (to qualify as infertile, you often have to be tested for infertility before you can be treated or covered under insurance, not taking into account that as a cancer patient you often know if you will be treated in such a way that you will end up infertile, and then the options are much more limited) for cancer patients that have fertility issues.
Thank you all for your advice, and I'm going to stick around, as this seems to be a wonderfully supportive commmunity!...and I think i'm going to need all the support i can get!