Newly diagnosed

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SC77
Posts: 2
Joined: Wed Aug 09, 2017 6:52 pm

Newly diagnosed

Postby SC77 » Wed Aug 09, 2017 7:10 pm

I had a colonoscopy on July 27th and my Doctor was able to see several cancerous tumors. I have had a cat scan and will have an MRI tomorrow. It is stage III because it is in my lower lymph nodes, though I dont know how many. I've had blood drawn for genetic testing but am unsure if the insurance will cover it yet. I'm waiting on insurance to approve my PET scan. I've met with my oncologist, surgeon, and radiologist.

Today I was tattooed and had measurements taken in radiology.

I'm only 40, non drinker, non smoker and no one in my family has had cancer. I'm so tired already because my hgb is low, 9.0.

I'm very scared I won't be able to handle treatment and work and family demands. I'm exhausted already and work and treatments haven't started yet. I am a teacher and school is starting very soon. My treatments will start a week after school starts.

If anyone has any positive stories or coping mechanisms for working during treatment, please share!
40/ F
Diag. Stage III rectal 7/27/17
Staring chemo and rad 8/22/17

Lee
Posts: 5185
Joined: Sun Apr 16, 2006 4:09 pm

Re: Newly diagnosed

Postby Lee » Wed Aug 09, 2017 8:37 pm

Hi and welcome, so very sorry for the reason you are here, butt you have found a great place for info and support. Since they tat you, radiation, you have rectal cancer. I am a 13 year survivor from stage III rectal cancer.

Remember one day at a time. Radiation is very up and down. Most people can handle it with little side effects. That is your 1st goal, then surgery, than chemo. Butt for now, just radiation. Keep your Dr informed of any problems you might be having. Don't wait for it to become a big issue.

Remember breath, one day at a time, you will get thru this.

Ask any and all question here. Know that this cancer IS NOT a death sentence. Many people are beating it, especially if it is caught early.

Am I correct, they found more than one tumor? There is a chance they might want to remove all of you colon. Are you sure there is no family history? Glad you are getting a genetic test. If you have siblings, they too should be scoped, earlier rather than later.

Bring all your questions and concerns here, we have all walked in your shoes and understand where you are at. Know that you are NOT alone, you have many people here who will help any way they can.

One day at a time,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Basil
Posts: 200
Joined: Thu Mar 16, 2017 12:33 pm

Re: Newly diagnosed

Postby Basil » Wed Aug 09, 2017 9:29 pm

SC77 wrote:I had a colonoscopy on July 27th and my Doctor was able to see several cancerous tumors. I have had a cat scan and will have an MRI tomorrow. It is stage III because it is in my lower lymph nodes, though I dont know how many. I've had blood drawn for genetic testing but am unsure if the insurance will cover it yet. I'm waiting on insurance to approve my PET scan. I've met with my oncologist, surgeon, and radiologist.

Today I was tattooed and had measurements taken in radiology.

I'm only 40, non drinker, non smoker and no one in my family has had cancer. I'm so tired already because my hgb is low, 9.0.

I'm very scared I won't be able to handle treatment and work and family demands. I'm exhausted already and work and treatments haven't started yet. I am a teacher and school is starting very soon. My treatments will start a week after school starts.

If anyone has any positive stories or coping mechanisms for working during treatment, please share!


Brother, it's a scary time. I went through this about four months before you, diagnosed 3/16/17. I was stage iii as well. I as told there would be 11-12 months of treatment but I should beat it (75-80%). Nothing guaranteed or even predictable in cancer but I got a call less than a week ago and was told the pre-surgery chemo killed the thing off, no further treatment necessary and have a merry day. Don't get down.

And get to a major cancer treatment center if at all possible.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

Soccermom2boys
Posts: 141
Joined: Tue Nov 10, 2015 10:29 pm

Re: Newly diagnosed

Postby Soccermom2boys » Wed Aug 09, 2017 10:26 pm

SC77 wrote:I'm only 40, non drinker, non smoker and no one in my family has had cancer. I'm so tired already because my hgb is low, 9.0.

I'm very scared I won't be able to handle treatment and work and family demands. I'm exhausted already and work and treatments haven't started yet. I am a teacher and school is starting very soon. My treatments will start a week after school starts.

If anyone has any positive stories or coping mechanisms for working during treatment, please share!


We sound very very similar--I was diagnosed two years ago this week (don't drink, never smoked, zero family history and only 45) and I too am a teacher and freaked out about what all to do. It is do-able to work and go through all three stages of treatment for rectal cancer. I must say the beauty to working through this is that you have something besides cancer to be consumed by. Yes it will be challenging at times--speak with your supervisor/admin people now to see how you can work out a flexible schedule if needed for when you are out for surgery and need occasional days for when you are exhausted from treatments. You could also consider short term disability--I needed to do that as my surgery needed an eight week recovery for a variety of reasons. I highly recommend speaking with your supervisor at school, that was who I went to right after I found out as I needed to have control over something and I needed to feel good about something and dealing with my work helped with that. Good luck and keep on coming back, we're here to help get you through! :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox
With these odds, how have I not won the lottery already?!

JennPixie
Posts: 16
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Newly diagnosed

Postby JennPixie » Wed Aug 09, 2017 11:01 pm

Sometimes, the exhaustion is overwhelming. Sometimes, there is pain that can freeze you mid step. Sometimes, you will just stay in bed.
But sometimes, and you gotta hold on to these, sometimes you feel like you can kick @ss, take names, and then smile "Who else want some.?." :twisted:

In my own wild ride, I've found that when I need strength, when I gotta push through something that I just haven't got the energy/strength/motivation for...
Nothing works better to get me offa my butt that blasting AC/DC's "Back In Black".
I'm not even kidding, that's my 'go-to' whenever I need some strength and hope and feeling "H*ll yeah, I can do this!"
Nothing makes me feel more bad-@ss awesome, and I swear I can take on the whole d@mn world!

Sometimes, one of the most important things in treatment/healing, is getting that mental energy surge. It helps you get through with a positive attitude.
If it's not a song, maybe it's a quote from a book/TV show/movie. Maybe it's that amazing picture of a majestic eagle soaring over a mountain.
Whatever it might be that gives you a surge of power, strength, and general "bad-@ssery" (my favourite word, right now)... Bring. It. With. You. EVERYwhere!
Have the song on your phone/ipod/whatever. Keep that quote on a paper in your wallet. Have a copy of that picture with you.

I know that I need to get my energy and strength back up. After everything, I just had no energy. Going to the mailbox had me exhauseted for the rest of the day, if I even dared go out at all.
My husband (Poor guy has his own health issues, but that's a whole other kettle of fish...), he's been trying to help me out. And honestly, the only time i feel pumped enough to go out for even a short walk, is after hearing AC/DC blasting from my headphones. It's become like a personal theme song, LOL.

Butt it works.
Find what gives you that surge.
Let it charge you up.

(Also, Pat Benatar's "Invincible" works wonders...) 8)
A work in progress...
...Aren't we all.?.
8)

Basil
Posts: 200
Joined: Thu Mar 16, 2017 12:33 pm

Re: Newly diagnosed

Postby Basil » Thu Aug 10, 2017 12:02 am

Funny - as a 40 yo I haven't listened to new music in a while but my cancer song is "do you realize" by the Flaming Lips.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

User avatar
ANDRETEXAS
Posts: 560
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas

Re: Newly diagnosed

Postby ANDRETEXAS » Thu Aug 10, 2017 2:10 am

I will say that there are two important things to remember....stay positive and exercise as much as you can even during chemo! If you have FOLFOX, you can walk while you're having your infusions at home. You may get tired, but you can get through it! Hopefully you can have your infusions at such times that you can continue your teaching duties as you would normally. It is not impossible. My hemoglobin at diagnosis was 6.3. Today it is 15.3. I'm still walking 2-3 miles a day. You will have some side effects most likely, but you can overcome many of those also. It may not be the easiest thing you've ever done, but if you have the right attitude and take it one day at a time, it really will pass by faster than you imagine. Come to this forum to ask any questions. There are many people with the knowledge and advice to help you. Keep us posted. Andre
2014
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT

ONE DAY AT A TIME !

SC77
Posts: 2
Joined: Wed Aug 09, 2017 6:52 pm

Re: Newly diagnosed

Postby SC77 » Thu Aug 10, 2017 6:58 am

Thank you everyone for your replies. I am just still in shock and not processing everything real well right now. I didn't mention that it is rectal cancer. I had been bleeding a lot. My first hgb was 7.0. I went to a gastrointestinal two years ago! He told me to change my diet and that was it. I should have pushed harder for someone to listen.

I will start radiation and chemo (xeloda pills) on the 22nd.

Waiting to start treatment is driving me crazy.

Due to the location of the tumors, my surgeon has said he does not anticipate the need for a temporary illostomy, just removal and resection.

I am putting my trust in my local hospital cancer center. Anything else would be too far away.

My children are 11 and 12. They haven't questioned things much. I feel like they just assume I'm going to get better and I'm okay with that attitude. They are not aware that I'm going to look and feel worse before it's better. Since I don't know what it's going to be like, I don't really know how to prepare them.

Thanks for letting me vent and for listening.
40/ F
Diag. Stage III rectal 7/27/17
Staring chemo and rad 8/22/17

JennPixie
Posts: 16
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Newly diagnosed

Postby JennPixie » Thu Aug 10, 2017 7:54 am

Basil wrote:Funny - as a 40 yo I haven't listened to new music in a while but my cancer song is "do you realize" by the Flaming Lips.

43 myself. I hear some new stuff, butt I'm kind of stuck in the late '70s-80s for music for the most part. (Hence my choices of AC/DC or Pat Benatar, LOL) :mrgreen:
Oddly, I've heard of the Flaming Lips, butt I don't think I've ever heard anything by them. I just might have to give 'em a listen...
A work in progress...
...Aren't we all.?.
8)

Aqx99
Posts: 169
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Newly diagnosed

Postby Aqx99 » Thu Aug 10, 2017 9:28 am

I was diagnosed back in February and started chemoradiation in March. I'm a water treatment plant operator and worked my 12 hour shifts the entire time I was in treatment. It's a tough road to travel. Both the chemo and the radiation have side effects, and everyone reacts differently. You will feel tired, that one is pretty universal. I had a lot of bathroom issues during and after treatment. I went in to treatment with persistent diarrhea, then the treatment had me fluctuating all over the spectrum. By the end, I was constipated. I had to take 2 doses of Miralax a day just to have a regular bowel movement, and did so right up until surgery. My other major side effect was, and still is, tailbone pain. My radiation oncologist treated all of my pelvic organs and my tailbone, to prevent recurrence in those areas. A couple of weeks in I noticed that it hurt to wear a belt because the pressure it placed on my back was excruciating. I switched to suspenders to keep my pants up. I had to buy a seat cushion to make sitting bearable, I'm still using it. All I can say is report any side effects to your doctor, they have ways to help you manage them. At the end, my tailbone pain was so bad, my oncologist prescribed pain pills for me to use as needed.
Anne, 39
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

SurvivorsSpouse
Posts: 73
Joined: Sun Nov 22, 2015 12:38 pm

Re: Newly diagnosed

Postby SurvivorsSpouse » Thu Aug 10, 2017 10:10 am

Good luck. Just remember, EVERYONE, said the same thing on day 1, "I don't see how I can do this." They did, and so will you. Many are looking back after over a decade, giving others strength and hope. Use that to get through each day and become the next person to give those that follow strength and hope.

User avatar
CaliforniaBagMan
Posts: 318
Joined: Wed Oct 14, 2009 6:05 pm
Location: California

Re: Newly diagnosed

Postby CaliforniaBagMan » Fri Aug 11, 2017 5:52 am

I'm one of those looking back over a decade. My stage IIIb diagnosis was in July 2007.

I would talk with your employer and keep them up to date with your situation. You will likely need some accommodation here and there, maybe even more than that, as you progress through treatment. Some only have mild reactions to treatment, mine was off the charts. You won't know the amount of impact on you until it arrives.

Good luck to you. Scary times for sure. But treatments are so much more effective now. The best advice I ever read here was don't get too high on the good news, or too low on the bad news. There will be some of both as you progress forward.
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07

NHMike
Posts: 373
Joined: Fri Jul 21, 2017 3:43 am

Re: Newly diagnosed

Postby NHMike » Fri Aug 11, 2017 6:22 am

SC77 wrote:Thank you everyone for your replies. I am just still in shock and not processing everything real well right now. I didn't mention that it is rectal cancer. I had been bleeding a lot. My first hgb was 7.0. I went to a gastrointestinal two years ago! He told me to change my diet and that was it. I should have pushed harder for someone to listen.

I will start radiation and chemo (xeloda pills) on the 22nd.

Waiting to start treatment is driving me crazy.

Due to the location of the tumors, my surgeon has said he does not anticipate the need for a temporary illostomy, just removal and resection.

I am putting my trust in my local hospital cancer center. Anything else would be too far away.

My children are 11 and 12. They haven't questioned things much. I feel like they just assume I'm going to get better and I'm okay with that attitude. They are not aware that I'm going to look and feel worse before it's better. Since I don't know what it's going to be like, I don't really know how to prepare them.

Thanks for letting me vent and for listening.


I was diagnosed the third week in June with rectal cancer and really wanted to get started as the tumor was getting larger and it was uncomfortable. Treatment didn't start until late July but the tumor has gone down (it's nowhere near as uncomfortable now) after two weeks of Xeloda and radiation. I found several people here and on another forum that were slightly ahead of me and I asked for their experiences. Experiences can vary widely but it's nice to know that you have someone ahead of you and many others that have gone through the entire process, that you can chat with and ask questions of. There are many blog-style threads here as well of people describing their experiences in post after post but many age out of the first page quickly.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31/17 - 09/08/17.
CEA 2.7; after 14: 1.9; after 28: 1.8.
KRAS Mutant KRAS p.Gly12Asp
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%).
Surgery Scheduled: 10/30/17

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: Newly diagnosed

Postby Volfan » Fri Aug 11, 2017 8:06 am

For me the first month of finding out and starting treatment was the hardest. I'm fortunate that my work and my wife's work bend over backwards for us.
I'm just on chemo so can't speak to radiation but once treatment started I started to get my energy back. That's not to say I don't have some days to pop up out of the blue where it takes everything to get out of the recliner and go to the bathroom.
Here again for me once a plan of treatment was in place and I got into a routine overall quality of life picked up greatly.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude


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