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Newly Diag Rectal Cancer Age 33

markatger's picture
markatger
Posts: 315
Joined: Feb 2005

Hi, I'm 33 yo female newly diagnosed with rectal cancer, still being staged - probably stage II or III. Pretty scared, stressed and depressed. I have an HMO for insurance, considering trying to go outside of network for care as HMO does not seem to compare to what is available at my local University Hospital Cancer Center.
Unsure about chemo, radiation options if likely needed. Have read stories and experiences of some people who think chemo and radiation are bad.
My tumor starts 4 inches into rectum. Worried about needing colostomy and what that is like.
Having full colonoscopy later this week. Worried that the colon scope will drag cancer cells from my rectum up into my colon.
Ugh...could type on and on about worries and questions. Fortunately my mom is helping a lot and trying to get answers to our questions from doctors.
Any advice would be appreciated..Thanks : )

Rondog
Posts: 26
Joined: Jan 2005

I feel your pain, but take a step back and wait until you get your colonoscopy done....Easier said then done, but just try not to stress over it too much...

I wouldnt be too worried about the procedure moving anything around, I was worried before mine and looking back on it, it was a walk in the park..

Chemo and Radiation...I havent had radiation, but have had alot of chemo....I'm not going to lie to you, its does suck, but there are so many types for different cancers and everyone reacts differently to them, but rest assured, you will be very closely monitored and they will do everything to make it was easy as possible...Anti-nausea meds, reducing dosages, etc..etc..The stuff sucks, but thats what they attack it with..Some people dont believe in and do other avenues, such as the Macrobiotic diet, Juicing, Nutrition...my personal belief is to do everything you can, I'm getting chemo, but have changed my diet, see an accupuncturist, which by the way really helps with the side-effects from the chemo, and see a shrink, which really helps as its been a tough 10 months so far...

HMO...I have an HMO plan and live in Los Angeles and have been very fortunate to have been dialed in to a very good Oncologist.

My advice in this area would be to see who is on your plan and ask around, certainly there is more than one person in your area, both a surgeon and oncologist, I would highly recommend getting more than one opinion..

I hope this helps a little, I know its scary crap, especially being young, I just turned 37 and was diagnosed at 36, and its still fricken scary! But, there are SO many people on this board who are supportive and have been there too...Keep your head up, YOU WILL BEAT IT!!

Always stay positive,

Rondog

taraHK
Posts: 1961
Joined: Aug 2003

Hi. Welcome to this group. I am so sorry about your diagnosis -- but you have found a great discussion group. Lots of information, lots of support.

I was diagnosed with rectal cancer at age 44 (I'm now 46). Mine ended up being Stage 3 (one lymph node affected). My presurgical staging was done using ultrasound (can be done for rectal, but not colon, cancer) -- I don't know if this is an option being offered to you. Can be useful as the stage can determine the treatment plan. I had presurgical chemoradiation (radiation is sometimes recommended for rectal cancer, not colon) for 5-6 weeks. Then a 5-6 'break', then surgery. My tumour was very low in my rectum. I ended up having a permanent colostomy. Of course, this is not something anyone wishes for! But, I can assure you, it is not THAT big a deal - I have adjusted, and my lifestyle is completely unaffected. The important thing is to get rid of the cancer! And to survive! After I recovered from surgery, I then had chemotherapy. I know that there are differing opinions about chemotherapy (and radiation). For me, the decision was not difficult - I wanted to take an aggressive approach. I haven't regretted that. The treatment (radiation, surgery, chemo) is no walk in the park. But, it does end. The emotional rollercoaster -- which you must be experiencing now -- is, in my opinion, the toughest part.

I ended up seeking a second opinion and going with a university teaching hospital -- which was a good decision for me. Don't be afraid to ask a lot of questions.

Please feel free to ask questions and share your worries here -- that is what we are here for. YOu are also welcome to email me directly anytime.
Wishing you all the best during this experience.
Tara

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

I'm so sorry about your diagnosis, but you have come to a great site for lots of help, information compassion and prayer. I cannot add any more to what Rondog and Tara have said other than to stay strong. Sounds like you have caught yours fairly early and come here often and let us know how you are doing.

Kerry

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hi, and welcome!
I was diagnosed at age 33, back in 2001. Before this, a very active and healthy female. I was stage 4, and today, am all clear. I did have chemo and radiation, and didn't have any side effects. I can't explain it, just very grateful! I agree with the others who have posted, wait until all the testing is done, and your options for treatment are laid out in front of you. Get as much information as you can. Where are you located? If you put that information, maybe people from your area will post their experiences and enable you to get the "inside scoop" regarding bedside manner, etc.

It's perfectly normal to be scared. But think of it this way, you've already made the biggest step towards recovery, and that is detection. You can get through this! Take time to read some of the personal web pages that the majority from this section have created. It will inspire you to fight the good fight!

Keep us posted, and e-mail me through this site if I can help you further!

Stacy

MJay's picture
MJay
Posts: 132
Joined: Aug 2004

I was diagnosed in May 04, age 37, with stage 3 rectal cancer. They think one lumphnode may have been involved but was unable to confirm because radiation obliterated the lymphnodes.

I know exactly the ride you are on now.... I am sorry you have to go through it... but you came to the right place.

I had 5 weeks chemo/radiation, 8 weeks recovery, major surgery in 9/04 resulting in a permanent colostomy and a rebuilt vagina, then did 2 out of 4 chemo treatments. I opted to stop chemo because I had such horrid side effects. Like everyone said, every body reacts differently.

My tumor was located at the very base of my rectum so a permanent colostomy was not an option... it was a definite. Oddly, that is the part I fought the hardest. I DID NOT WANT THAT!!!
Tara, who wrote above, was a huge help to me. She is exactly right... the emotional ride before hand was so much worse than life with a pouch.

Go with your gut feeling. Do your research, talk to people here. But in the end go with what feels right to you. The most important thing is to beat this disease.

Good luck and keep in touch!

MJay

markatger's picture
markatger
Posts: 315
Joined: Feb 2005

Thank-you very much for all the replies with information and encouragement. Its invaluable to hear from others who have been in the same place. I'm having a C-T scan done this morning and am told that they might be able to see if lymph nodes are involved and other mestastis. I'm trying to be ready for any result. I have a feeling I'm stage three from size of tumor and the fact that I had bleeding for several years that was dismissed as hemorrhoids. Ugh
Well, I guess just gotta face it as it comes.
Thanks again for replies. I definitely will visit here often.

andreae
Posts: 238
Joined: Sep 2003

Hi,

I'm so sorry about your recent diagnosis. My heart stops everytime I see a newly diagnosed patient... I remember the time of my diagnosis... Let me tell you, EVERYDAY WILL GET A LITTLE BIT EASIER. I promise.

My initial diagnosis was the same as yours. I was diagnosed January 2003 at 20 yo with stage III rectal cancer. I had six weeks of chemo/radiation (I strongly recommend this protocol because it prevents local recurrence) and my main complaint was fatigue. I had an abdomino-perineal resection of my rectum with a permanent colostomy and a partial vaginectomy. The colostomy was necessary as the tumor had infiltrated my sphincter and nothing could be saved. The doctors will do everything in their power to avoid the bag but if you do have to have one, it is really not so bad, AT ALL. I am grateful for my bag because it was after the surgery that I finally felt better and the pain from the tumor was gone. I then had 4 months of follow-up chemo. Unfortunately, disease has spread to my lungs, but I was a very advanced stage III at diagnosis (tumor had infiltrated to vaginal wall) so the doctors were not surprised. I am happy to report that there is no sign of local recurrence so the radiation and aggressive surgery did there jobs.

This is truly a very difficult part of your cancer journey. Keep us posted as a battle plan unfolds and we will be happy to answer any questions.

My thoughts are with you. Livestrong. Have hope and faith and surround yourself with love. YOU WILL GET THROUGH THIS, one day at a time.

Andrea

jana11
Posts: 708
Joined: May 2004

Hi. So sorry you had to come, but glad you found us. I am 34 yrs old, diagnosed at age 32 with stage 3 rectal cancer. I had an HMO - and my HMO couldn't have been any better!! Sadly, I am now stage 4 after having thoracotomy to remove lung met... but I am doing great. Currently in the waiting zone - getting CT's every 4 months.

I have a permanent colostomy - sigh... but it isn't bad. I irrigate in the am, so it is pretty normal. But bikinis are definately out of the question. :)

Colonoscopy doesn't drag cancer cells. Try not to worry. The prep is the worst part. Just hang in there. Make sure you get good doctors that you (and your family) feel comfortable with.

I had pre-op chemo and radiation, then tumor removed, then chemo again. It is not bad chemo. Hair thins a little, but doesn't fall out. Felt very tired, but was able to work full time.

Just stay tough. You can do this, you have to. Be strong. This too shall pass. Cancer has a way of testing you - fight back.

We are here for any questions/concerns. Take it all one step at a time.

jana

johnom's picture
johnom
Posts: 86
Joined: Jul 2004

Hi, there.
Like everyone is telling you this is the place to be right now. We have all gone through much of what you are and will be going through.
I can tell you my stage 2 tumor was 8 cm in from the anal verge and that is about 4 inches. After chemo and radiation had shrunk it to almost nothing I had an LAR (part of colon removed) with no colostomy. I was told a rule of thumb is that if the tumor is at least 6 cm or higher it MAY be possible to save the sphincter, etc.
Follow the advice here. Wait until you have the colonoscopy before making any decisions or drawing any conclusions about the future. Everyone responds differently to their tailored treatment regimen. Hang in there. You are in for a rough 8 months or so, and then.....relief such as you have never experienced before.

4law's picture
4law
Posts: 112
Joined: Dec 2004

I was diagnosed in Sept. 2004 with rectal tumor. Had 6-7 weeks of radiation and chemo (continuous 5FU with an infusion pump), which shrunk tumor away! Low anterior resection removed 19 cm of rectum along with 22 lymph nodes -- all negative for any signs of cancer. Staging was T2 (just into muscle layer of wall of rectum). No signs of spreading anywhere. I will start 6 months of adjuvant therapy (5FU and leucovorin) in the next couple of weeks. I have a temporary ostomy. Moral of story: I was scarred sh--less at first -- but followed MD's advice and went for most aggressive treatment and I am very pleased with the result. In 6 months I hope to look back at all this as being a bad, bad dream and then go on with life. THERE IS NO REASON YOU CANNOT DO THE SAME. My tumor was approximately where yours is. You're younger (I'm 60 yr male) and should do fine. This website is a storehouse of information, help and inspiration. Follow the latest protocols for your diagnosis and you will beat this. I'm not a doctor, but I never heard of colonoscopy dragging cancer cells anywhere. I hate the ostomy -- but -- beleive it or not, as each days passes, it becomes more and more tolerable and you will learn that the important thing is to beat the cancer -- everything else will fall into place and become more and more tolerable. Good Luck -- there are a lot of people here who wish you well.

rejoyous
Posts: 259
Joined: Nov 2004

Hi,

I'm so sorry to hear your news. I know what a scary journey into the unknown you've embarked on. But congratulations for finding this board already! It took me much longer to check in here. There's a ton of support, information, and encouragement here. Welcome.

Regarding your HMO vs. university hospital, my sense is that much of colon cancer treatment is pretty standard procedure. I would definitely go for a second opinion, no matter what, because these are big decisions, but once you decide on a care plan, it may be that your network would do exactly what you'd get outside. That was my experience, anyway.

I'm stage 3 and finishing up 6 months of chemo. I know that everyone's experience varies, but for me, it really was quite bearable. If you go that route, I highly recommend an anti-nausea drug called Zofran. I also found that simple things like drinking a lot of water and taking walks as much as possible seemed to help move the chemicals along through my body. You can ask for more help if/when you decide on a treatment plan. People here love to give advice and share their tips!

Most of all, figure out a way to keep your spirit strong. I found deep breathing very, very helpful. And remember to keep an eye out for the bright spots. Although I wouldn't wish it on anyone, I really am quite grateful for the life lessons cancer has already taught me. Lance Armstrong's book, It's Not about the Bike, is also quite eloquent on this subject.,

Courage!

slammer
Posts: 120
Joined: Apr 2004

Hello & welcome to this wondrful site. I found this recently and there is alot of support here & advice & well wishes, I could go on & on. Sorry about your new Dx, but keep the strength, and your support from family. It all sucks yes! I was 43 when told I had colon ca and I thought I was young, as I have found out not even....Chemo isn't a walk in the park but for mine I acyually did o.k. with yes side effects but managable as others said with medication, & all. But keep informed & I hope the best for you, and keep faith too, Live strong as Andrea said, We need too. God Bless
Amy

markatger's picture
markatger
Posts: 315
Joined: Feb 2005

Hello
Can't say enough how much I appreciate this site and the advice and encouragement that I've received in the last day from everyone. Thank-you!!!
I just got back from colonoscopy and C-T scan yesterday. First the good news : rest of colon seems to be clear. Bad news : C-T scan showed a suspicious mass in my liver. Ugh....just read some not so bright news about liver cancer. But I think I've read here and other places of people who had liver mestastis who are doing ok. And its not confirmed that it is cancer, need to get more tests possibly a biopsy.
I'm still stuggling with being unsure about my HMO - Group Health in Redmond, Washington ( a suburb of Seattle). At the University of Washington they have a 25 member Colorectal Cancer team! At Group Health they don't even have one Board Certified Colo-Rectal surgeon. But I have been hearing that it is a fairly common procedure. But if my liver is involved maybe it will be less of a standard procedure. I am scheduling a second opinion at UW that my HMO is paying for which is great.
I'm sorry all of you faced what I am facing now. It's unreal for me. For some reason today I'm not doing too bad. Getting a lot of information has helped a lot.
Thank-you : )

aspaysia's picture
aspaysia
Posts: 257
Joined: Nov 2003

I am Ned 2 1/2 years post dx rectal ca (11/01). For two years the doctors watched:
1. a suspicious shadow on my liver
2. a suspicious swelling on my left ovary
3. a suspicious lump in my right breast
4. something suspicious going on at the surgery site
5. I don't know what at the top of one hip bone
After much poking and proding and multiple scans and drawing of blood they chalked it all up to the mystery of the human body. Well, my body.
Don't worry about this stuff until you know for sure that it is something to worry about.
And then ask, "What's the plan?"
Aspaysia, who is still creaking along

RectalCA41
Posts: 2
Joined: Feb 2005

I wanted to write you to let you know I was diagnosed almost identically to you in Feb. 2004. I had a tumor 3 1/2 inches into my anus, and it was 7 cm x 4 cm x 3 cm. I underwent neoadjuvent chemo and radiation for 5 1/2 weeks, had a temporary colostomy for 1 1/2 months following my LAR (surgery) and 8 cycles of FOLFOX 4 following a reconnection surgery of my temp colostomy. It was very hard, but I am now a month out of my final chemo and getting much better. I worked throughout the entire process, and got very sore from the radiation, and tired from the chemo. Attitude is everything, though. Don't ever give up, it is very doable, and my life is now almost 90% of what it was prior to this ordeal. I can eat almost anythng now, and am told I will continue to get even better for another 3 months. So I ma very optimistic. Please feel free to contact me with any questions you may have; I've learned this is not anything to go through alone, and would be happy to help where I can.

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