Newly diagnosed with rectal cancer

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kmv
Posts: 64
Joined: Fri Aug 02, 2013 6:56 pm

Re: Newly diagnosed with rectal cancer

Postby kmv » Fri Aug 09, 2013 8:28 pm

Thanks everyone for all of the support and encouragement! At this point I have learned that I am stage IIIB, pending PET scan results. I will get those results on Monday, my 38th birthday. All I want for my birthday is good news!

If I really am IIIB, then my treatment plan will be six weeks of radiation with chemo (xelodia pills), then wait 6-10 weeks for surgery, then four months of chemo. The big question is whether or not I will need a permanent ostomy, because the tumor is very low in my rectum. Does this sound reasonable to everyone? I have a second opinion scheduled with a colorectal surgeon at Johns Hopkins.

None of my doctors has mentioned diet and exercise. I have some books on cancer-fighting foods, but I am also wondering what experience others have had with this.
39 yo mother of 3
7/29/13 dx rc six wk postpartum, met to liver
10/9/13 finished 2 cycles FOLFOX
12/2/13 finished chemorad
1/3/14 liver resect
2/28/14 APR
7/16/14 finished 4 cycles FOLFOX
7/28/14 CT scan NED
10/27/14 CT scan 3 lung lesions
2/15 finished 4 cycles FOLFIRI
4/15 VATS on right lung
four mets in left lung, 2nd VATS on 5/21/15

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Newly diagnosed with rectal cancer

Postby justin case » Sat Aug 10, 2013 2:27 pm

You would be surprised how low a tumor can be, and still have continence. My tumor was at 5cm from the anal verge, and after taking 2 cm for clear margins, I was left with 3 cm (about 1 1/2 inches). I'm doing well, and I hope things go well for you also. I had a temporary ostomy that has since been reversed.
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

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GreenMonkey
Posts: 336
Joined: Wed Jun 12, 2013 5:43 am
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Re: Newly diagnosed with rectal cancer

Postby GreenMonkey » Mon Aug 12, 2013 11:07 am

Hi, I also have a large, low level tumor and I'm going to Johns Hopkins. I elected to do High dose, internal radiation. My doctor is Dr. Herman. He's wonderful! I have surgery scheduled for September 10th. I'm also blogging about this at greenmonkeytales.blogspot.com. Would love to connect with you!
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com

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GreenMonkey
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Re: Newly diagnosed with rectal cancer

Postby GreenMonkey » Mon Aug 12, 2013 11:33 am

Hi I'm newly diagnosed too. What a terrible time to be diagnosed after the birth of a child. Soooo not fair. My daughter is now 22 and my grandson is 12. I lost a child to suicide at age 23.

I thought my symptoms were the result of multiple surgeries due to breast cancer.

I am scared too and I feel so alone.

My surgery is scheduled for September 10th. The unknown is the worst part (so far).
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com

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kellywin
Posts: 492
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Newly diagnosed with rectal cancer

Postby kellywin » Mon Aug 12, 2013 1:31 pm

kmv,

That plan sounds pretty similar to mine. I had 5.5 weeks of xeloda & radiation, then surgery, then 4 months of chemo afterward (Xeloda + Oxaliplatin = Xelox), if it's Xelox, the 4 months is probably 6 rounds, one infusion every 3 weeks with pills for 14 days, 7 days off, then back on.

The radiation for me wasn't really bad, everyone is different, but I wanted you to know that some of us didn't have a really hard time with it. It will probably put you through menopause, so you might have a chat with your OB/GYN so that you're prepared. My Radiation doc told me a lot of horrid things and scared the crap out of me (she didn't have a lot of compassion), but so you know, it wasn't that bad.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

kmv
Posts: 64
Joined: Fri Aug 02, 2013 6:56 pm

Re: Newly diagnosed with rectal cancer

Postby kmv » Mon Aug 12, 2013 8:28 pm

I got the PET results today, and I have one liver met 2.5 cm. So, my initial treatment plan is scrapped. My onc said we will start with 2 months of FOLFOX followed by radiation/chemo and surgery. I didn't know about high dose internal radiation - I will ask the Johns Hopkins onc (Azad) when I meet with her on Weds. What are the alternatives I should ask about? Could there be an advantage to doing surgery first, at least to the liver?
39 yo mother of 3
7/29/13 dx rc six wk postpartum, met to liver
10/9/13 finished 2 cycles FOLFOX
12/2/13 finished chemorad
1/3/14 liver resect
2/28/14 APR
7/16/14 finished 4 cycles FOLFOX
7/28/14 CT scan NED
10/27/14 CT scan 3 lung lesions
2/15 finished 4 cycles FOLFIRI
4/15 VATS on right lung
four mets in left lung, 2nd VATS on 5/21/15

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: Newly diagnosed with rectal cancer

Postby tammylayne » Tue Aug 13, 2013 11:18 am

Sorry to hear about these results. I am sure your team will look at all of your options wth you and come up with the best treatment plan, but don't be afraid to ask for a second or even thrid opinion if you like. This is YOUR life...

Sendng you a happy birthday...yes a HAPPY Birthday!! Today, this birthday is happening NOW, and we have to stay in the NOW...so celebrate and enjoy those you love to be with...and a second or even third piece of cake is allowed :lol:

Gentle hugs...
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

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GreenMonkey
Posts: 336
Joined: Wed Jun 12, 2013 5:43 am
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Re: Newly diagnosed with rectal cancer

Postby GreenMonkey » Tue Aug 13, 2013 6:47 pm

Katie, I sent you a private message but I don't see it in my "sent message" file. Having the hardest time maneuvering around this site! Let me know if you didn't get it. Thinking about you! Shannon
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com

lorrainem
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Facebook Username: https://www.facebook.com/lorraineaminogue
Location: NY

Re: Newly diagnosed with rectal cancer

Postby lorrainem » Tue Aug 13, 2013 7:59 pm

Shannon,
Many of us RC patients aren't sure until we wake up if we need a permanent ostomy or not, so that is standard for some of us. The temporary was a life-saver during chemo (Folfox for me,) once you get the rhythm down, like anything else it takes time and the good old trial and error part. You will get past that; focus on your strength and your health.
We are hear for you!
Lorraine
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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GreenMonkey
Posts: 336
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Re: Newly diagnosed with rectal cancer

Postby GreenMonkey » Wed Aug 14, 2013 9:10 am

Thank you lorrainem! and thank you to everyone who posts a response. the information is so valuable.
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com

Rheaeliza
Posts: 421
Joined: Fri Dec 14, 2012 4:42 pm
Location: New York, New York

Re: Newly diagnosed with rectal cancer

Postby Rheaeliza » Wed Aug 14, 2013 10:45 am

To Shannon and KVM,
I'm so sorry you are both going through this. I echo what everyone else here says...the beginning is the HARDEST part. I was diagnosed December 7th at 30 years old with stage IVB, started chemo December 26th, and for the first month I probably cried every single day. I was so scared, so angry, didn't know how to accept it, didn't know how to fight, how to pay for this all, how to work, how to cope. I'm lucky to have a huge support system of friends and family, and an amazing boyfriend, though during my initial treatment months my boyfriend had to fly halfway across the world to be by his fathers side as he rather suddenly passed away from complications from lung cancer. I did not think that we would get through those months. I had metastatic spread everywhere. Multiple large liver lesions, abdominal cavity, ovary, ommentum. I was told surgery would not be an option.

Here I am, 15 treatments of chemo later, and my tumors have shrunk more than my oncologist has ever seen. I am going for HIPEC surgery in less than two weeks at Mt. Sinai and then liver resection later. My surgeon thinks that he can get everything, and my oncologist actually has said the words "cancer free" as a possibility for my future. This could happen less than a year after my diagnoses. So...I tell you both this as encouragment, as many people on this site encouraged me along the way, to fight through it, to get other opinions, do my research.

On a side note, as I'm typing this, there is a commercial for Cancer Treatment Centers of America on TV...and the dude in the commercial has stage 4 colon cancer. I don't know much about them, but I do know that you can get copies of your scans and send them far and wide. My surgeon who does HIPEC at Mt. Sinai in NYC as well as liver resections (Mt. Sinai gets more refferals for liver resections than any other hospital in the country) does phone consults and is super available via email. Plus Sloan Kettering does the HAI pump to treat liver mets. Lots of options. Keep your heads up ladies! I'm not promising that it gets easier, but it does change, it gets different, you develop coping skills you never knew you had. Feel free to reach out to me if you have any questions or need to vent at all!

best,
Rhea
12/7/12: 30 yrs. old, Dx stage 4b.mets to liver, ovary, nodes, ommentum.
7 months chemo, shrinkage!
8/26/13 HIPEC, colon resection,hysterectomy, appndx, gallbladder out.
9/12/13:leak in colon, temp. loop ileost, home 9/18
11/3/13: liver resect.
1/2014 Ostomy reversal, one week later, abcess surg., fistula, tpn.
No more chemo, NED since 11/13

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GreenMonkey
Posts: 336
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Re: Newly diagnosed with rectal cancer

Postby GreenMonkey » Wed Aug 14, 2013 8:41 pm

Thank you Rheaeliza and everyone who offers advice !!!

I feel less frightened here - much better than the outside, "life is grand" world.

As for Cancer Treatment Centers of America - I contacted them when I was first diagnosed and my gut screamed "too good to be true" they sounded sooo ideal! I wanted to move right in. and then I googled them.

http://www.reuters.com/article/2013/03/ ... L820130306

I lived on a breast cancer board during most of 2012. found hope and peace there. Thank you for welcoming me here. I had a doctor tell me, "if your nodes are clean you'll get 10+ years. If its in your node, you get 5, and if its metastasized, then 12 to 14 months. It took all the strength I had to walk out the door without collapsing to the floor.
RC - T3NXMX depth of invasion 3mm - diagnosed 5/26/13 age 53
High Dose, Internal Radiation at Johns Hopkins resulted in a PCR
LAR 9/10/13 - 0-26 nodes. CEA 1.9 post surgery
XELOX started 10/21/13(8 rounds)
11/14 NED
greenmonkeytales.blogspot.com

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O Stoma Mia
Posts: 1603
Joined: Sat Jun 22, 2013 6:29 am

Re: Newly diagnosed with rectal cancer

Postby O Stoma Mia » Sun Aug 18, 2013 3:50 am

GreenMonkey wrote:Hi, I also have a large, low level tumor and I'm going to Johns Hopkins... I have surgery scheduled for September 10th...


Shannon - Our thoughts and prayers will be with you on September 10th. Here's hoping things go well for you.

kmv
Posts: 64
Joined: Fri Aug 02, 2013 6:56 pm

Re: Newly diagnosed with rectal cancer

Postby kmv » Sat Aug 24, 2013 9:01 am

Update-

I finalized my treatment plan with Hopkins, and started FOLFOX yesterday. So far I feel ok, but know that the side effects will peak around day 3. After chemo I will have radiation, then evaluate surgery options. I am hoping and praying for a full response to treatment. The surgeon said he can remove my liver tumor but might have to take the whole right lobe. My rectal tumor is so low that I will probably need a permanent ostomy, but at this point I will do whatever I have to in order to survive. I'm curious about the HAI pump and plan to ask my onc about it when I see her next.

Kelly - My girls are 9, 7 and 10 weeks old. I have told the older two that I have cancer, and that I will need some strong medicine that will make me sick, then surgery, but that I will be ok. My 7yo asked me if I am going to die and I said no. I probably should have said something less definitive but I wasn't prepared for the question. Anyway I am not going to die any time soon. They have been very understanding and protective of me, making sure I am not eating junk and being careful with my chemo bag.

Using this forum has definitely made me feel less alone, and has given me so much valuable information! Thank you everyone! I will probably start posting on the stage 4 thread from now on :?
39 yo mother of 3
7/29/13 dx rc six wk postpartum, met to liver
10/9/13 finished 2 cycles FOLFOX
12/2/13 finished chemorad
1/3/14 liver resect
2/28/14 APR
7/16/14 finished 4 cycles FOLFOX
7/28/14 CT scan NED
10/27/14 CT scan 3 lung lesions
2/15 finished 4 cycles FOLFIRI
4/15 VATS on right lung
four mets in left lung, 2nd VATS on 5/21/15

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Newly diagnosed with rectal cancer

Postby justin case » Sat Aug 24, 2013 12:41 pm

kmv wrote:Update-

I finalized my treatment plan with Hopkins, and started FOLFOX yesterday. So far I feel ok, but know that the side effects will peak around day 3. After chemo I will have radiation, then evaluate surgery options. I am hoping and praying for a full response to treatment. The surgeon said he can remove my liver tumor but might have to take the whole right lobe. My rectal tumor is so low that I will probably need a permanent ostomy, but at this point I will do whatever I have to in order to survive. I'm curious about the HAI pump and plan to ask my onc about it when I see her next.

Kelly - My girls are 9, 7 and 10 weeks old. I have told the older two that I have cancer, and that I will need some strong medicine that will make me sick, then surgery, but that I will be ok. My 7yo asked me if I am going to die and I said no. I probably should have said something less definitive but I wasn't prepared for the question. Anyway I am not going to die any time soon. They have been very understanding and protective of me, making sure I am not eating junk and being careful with my chemo bag.

Using this forum has definitely made me feel less alone, and has given me so much valuable information! Thank you everyone! I will probably start posting on the stage 4 thread from now on :?


I applaud your medical team for giving you chemo before radiation. Killing some of that junk, before radiation, can only help you prognosis, in fact I believe it was the ultimate cause of my regression. Perhaps it will be the fastest way to surgery, and although that may not sound appealing, it is the best way to manage this hateful disease. I hope things go well for you.
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012


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