newly dx t3 rc

[dad67]

symptoms started in feb'15 thought it was hemorrhoids finally had colonoscopy 9-17-15 found tumor, ct scan in afternoon, appt. with surgeon and oncology dr. 9-18, radiation dr. 9-21, mri 9-24, medi-port 9-28. I'm 47 years old & my head is spinning with how fast everything is moving right now. The port was my first surgery in my entire life. I start 6 weeks of chemo/rad on 10-5 then 4 weeks off, surgery, then 4 months of chemo. I guess I'm just looking to gauge what me & my family are in for.
Father of 3 at home 2 out of the house & a super supportive wife. Thanx

[midlifemom]

You are in for a marathon and a new way of life.
I can't speak to rectal cancer butt be sure to read older posts about protecting yourself from the radiation.
Approach this new segment of your life with as much humor as possible - it will help.
If you know what chemo drugs you'll be on you can search on them, ask questions about side effects and how to manage them.
Welcome to our club - sorry you have to be here. There's lots of great folks with knowledge and support here.

[cmewrrie]

Your story sounds familiar - we started this journey when my husband was diagnosed in April. Only difference is he took oral xeloda instead of iv during chemo rad. We also have 5 children, 2 teens still at home.

You can see my dig for our details so far. In the middle of the first xelox cycle now.

Feel free to ask any specific questions about treatment.

Hang in there - it's a long road but you will find much support here!

[cathy123]

Wow - things are really moving fast - I am sure your head is spinning. I had a lot more waiting between scans and appointments, I think it was 6 weeks or so between diagnosis and radiation starting. But as long as you are happy with your Drs it is good to get started.

The positive side is that if the scans don't show spread and you are only t3 you have an excellent chance of getting thru this. The bad news is that it is a long road. I was diagnosed last October, and just had my ileostomy reversal this week capping off a year of chemoradiation, surgery, xelox, and finally another surgery. It was definitely a rough year, but there were really only a handful of weeks when I really felt horrible - a few days during radiation, the weeks right after surgery, a few days after each chemo infusion. Other times I was sometimes run down but often felt pretty much normal - at various times I skied, camped, vacationed, swam in the ocean, etc. I work part time from home and am otherwise a stay at home mom to elementary aged kids so I did have time to rest when needed - if you have a very demanding job just make sure you get some down time and don't wear yourself out.

I think the most important thing is to have a good board certified colorectal surgeon. For stage 2, the chemo choices are pretty standard - many people do folfox, some only do the xeloda portion, so although it is great to have a good and caring oncologist they will all likely lead you to pretty much the same place. Rectal surgery is difficult from what I understand, and a good surgeon can make a big difference.

You don't mention whether you will need a temporary (or permanent) colostomy. If you do it isn't pleasant, and is definitely really tough at first, but not the end if the world. Although I must say I am happy to have it gone! If your tumor is higher in the rectum and you can avoid it all the better.

If you have any other questions write back anytime. I have found this board to be so helpful!

[dad67]

thanx for the responses. The tumor is where the rectum & colon meet so my surgeon is pretty confident that I won't need a colostomy. The ct & mri showed no spread to other organs but they did show that my lymph nodes were enlarged

[Nik Colon]

Welcome, but sorry you have to be here, you said t3, is that all you know? What stage, where, spread, etc?

Click here to add all info to your sig so we can know to possibly help further, and for future reference
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[ANDRETEXAS]

Stay tough, stay positive and most importantly, take one day at a time. You can do it !! Andre

[ticktock10]

Sorry you have to be here but welcome to the club. You will get good advice here. The second half of the chemo-rad treatment can get pretty tough, so the more prepared you are for that the better. Prevention is better than cure when it comes to radiation burn etc.

[sadysue]

Welcome dad 67 and sorry you have to be here. I had my tumor where the colon and rectum join too. My pre diagnosis life sounds similar to yours - I was very healthy, never got sick, felt great and had no symptoms except what I thought were hemorrhoids. The hemorrohoids did not alarm me since many in my family had the problem and I just thought it was my turn. The colonoscopy proved me very wrong My rectum was entirely removed and a part of the colon. I had an ileostomy for about 7 months after surgery. This gave my surgery site plenty of time to heal - no activity. My colorectal surgeon did a straight connect - colon to sphincter muscles (they were healthy and in good shape) and created some new plumbing for me. One tip about the pre surgical radiation. Buy the softest toilet tissue you can find. Don't "wipe" yourself clean. Buy a small "cleansing bottle" and squirt water to clean yourself and then pat, pat, pat dry. I can still hear my radiation onc telling me pat, pat, pat and NEVER wipe. I never had a moment of pain/burn from the radiation and my skin stayed healthy. It's been a long road and very difficult at times but I am still here and living my life. Many things have changed but my new normal is working well and I am happy I made the decisions regarding my treatment that I did. Wishing you and your family good luck in the upcoming months.

[CaliforniaBagMan]

My diagnosis was pretty similar but not exact. That was in July 2007.

The best advice I ever got was from this forum. John603 wrote something like: "Don't get too high on the good news, or get too low on the bad news. You will receive some of each."

Last week I was hiking and fishing in the Sierra Nevada mountains, quite remote at about 7,000 ft elevation. So the good news is that you can get through this and resume some normalcy of life afterward. Many of the lucky ones do, like me. Things did not return 100% like they were before, but all things considered. things turned out very well.

The bad news is that you don't know how well you will tolerate the treatments, so you can't really predict what activities you can or cannot do in the near future. For me, I had one of the most severe and difficult responses to chemo ever described on this forum. Lots of very nasty side effects that were debilitating. I was lucky enough not to work through treatment, but if I was in construction, or was a truck driver, I couldn't have done it. With swollen feet and a need to periodically get to the bathroom RIGHT NOW but still not get there in time, an office job would probably have been impossible as well. Not to mention the chemo fogs your thinking as well.

So, good luck in your hard journey which will pose an uncertain amount of difficulty. My advice is: "Don't get too high on the good news, or get too low on the bad news. You will receive some of each."

[weisssoccermom]

Welcome.....actually, you are moving along quite quickly which is better than most people. Oftentimes, from diagnosis to the beginnings of rad treatments can be as long as 6 weeks so you're doing well in that department.

One thing I would be concerned about is the small length of time between the end of your treatments and your surgery date. Radiation works long after the treatments have ended and you don't want to go through the treatments and not give it enough time to do the 'job' it was meant to do. The 'older' protocol called for 6 weeks rest....the newer protocol is more like 8 - 10 weeks. Honestly, that would concern me.

Here is a link to verify that the surgeon you have picked is board certified in colorectal surgery. Every surgeon is first board certified in general surgery and then some go on to specialize in other areas. It doesn't necessarily mean that a general surgeon, who can do the surgery isn't fine....just that he/she isn't board certified in colon and rectal surgery. The pelvic area, particularly in the male, is a very small area to operate on AND nerves, muscles, etc. are all within millimeters of each other. If it were me, and this is only my opinion, I would take my time and make 100% certain that the surgeon I was going to was board certified in colon and rectal surgery....and not just in general surgery.

http://www.abcrs.org/verify-a-physician-2/

Don't be afraid to get a second opinion. There is no 'rush' right now to pick a surgeon...you have time. The surgeon you picked may very well be a colorectal board certified surgeon, BUT...I would be very nervous about the 4 week 'rest' period. IMO, it's just not enough time to: (a) allow the treatments to do its job and (b) allow your body to heal and prepare you for the journey ahead.

You don't mention whether or not you have been told things to do while undergoing chemo rad treatments....diet, hydration, skin care, etc. If you haven't been given that info (and, IMO, rad onc clinics aren't necessarily the best at giving out advice to be proactive), please let us know....we can help fill in the blanks for you. The LAST thing you want to do is to wait for any problems to surface and then seek help....by then, it is way more difficult to get things under control

You said you got the port....are you getting your chemo during your treatments via the port or is the doctor giving you the pill form?

Best of luck.....keep us posted.

[kellywin]

Not to re-butt what Weissoccarmom said, but my surgery was 4 weeks to the day from radiation. I had an excellent colorectal surgeon, 2 actually, father and son, he was confident that 4 weeks was sufficient. I had a newer type radiation (IMRT?) so that may have come in to play. Just offering a different opinion. My results were pretty good.

One thing I will add is to find a good Physical Therapist now. This is something they don't talk about, and don't want to admit. The radiation toasted my butt muscles. I think if I would have gotten on a good PT regimen early it may have saved my issues. I'm doing PT now and it's helping, but she (my PT) said she thinks if I would have started early I'd be in better shape.

Sorry, I forgot to welcome you, sorry you have to join.

[bellavida]

Welcome. It's been a while since I checked in. I don't type too much because my fingers have neuropathy (nerve damage) from the chemo. Anyhow, I saw your username and I think you are my age (born in 67?). I was diagnosed with CRC in October of 2012. I did the chemo/rad regimen, then surgery, then more chemo. I chose to do the mop up chemo in pill form because I wanted to avoid the neuropathy I suffer from now. Well 6 weeks after my chemo finished, they started looking at a few lung spots. It took them 6 months to grow big enough to biopsy but they ended up cancerous. I had a lung wedge resection and then 11 of 12 chemo treatments. (stopped because of the neuropathy and I developed a blood clot on my jugular).
The advice I can give you is:
Prepare for the radiation to literally fry your behind. Load up on the lotions and cremes they recommend and try everything till you find what works for you. I love over the counter butt paste. My husband installed an inexpensive bidet from home depot that I still use to this day. You will think that it is a breeze at first but then it hits you in the last couple of weeks (and for a little while after the radiation is done) It's like passing razor blades. Wash and pat, but don't wipe. I started eating very little so I could delay pooping as long as possible. I took pain meds (lots of them) which actually constipate you so I kinda thought of it as a good thing. Just remember, as bad as it gets, it will get better pretty quickly. You will survive it. My tumor was 2cm on my rectum and 2 cm on my colon. It was pretty low. That is where the radiation will be. Take care of yourself and get lots of sleep. Sleep is important. Try to walk because exercise does help, and as someone mentioned...this is a marathon so be patient. Good luck friend.