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Just starting my journey

Kazenmax's picture
Kazenmax
Posts: 416
Joined: Feb 2016

It's been 3 weeks since I first found out there was a mass... next day colonoscopy showed rectal cancer t3n1. CT scan confirmed. ..next week MRI and another CT scan for radiation targets.

6 weeks chemo/radiation, temporary ilostomy...then we see where we are at.

This has all been overwhelming and strange. I'm 63 and healthy. I don't take any medication. Never been sick...never been hospitalized.  And now I have rectal cancer and looking at a permanent colostomy when I'm done.

Two days ago I decided to do nothing. I didn't think I was capable of dealing with everything to come. But since I found this page, I think I can at least try. I have a supportive husband,  a wonderful son and two lovely grandchildren.  I want to get this done now. I feel like the longer it takes the worse I get. 

Anyway... here I am looking for more support. I've read lots of great posts here and I'm greatly encouraged. I appreciate any and all comments.

Thank you 

 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

You can do it. It's not fun or pleasant but it can be beaten or kept in check long enough to still give you a good amount and quality of life. It's different for everyone and there are lots of variables so nobody can say how your journey will go.

How sure are they that you'll have a permanent colostomy? I have an illeostomy that was supposed to be temporary but it's been just over two years now and I think I'm going to keep it. I'm on a reversal waiting list so I have time to decide.

I had some additional issues and side effects that had to do with the colon/rectal cancer that aren't typical so I had a bit of a tough go but it should have been just radiation, chemo, surgery, mop up chemo and then on with my life. I'm a stage three. And I believe that I'll be around for quite a while.

There are some very inspiring stories on here as you've read. Just remember that stress is one of the worst things for cancer so try to relax and let your oncology team take care of you. Come on here any time you need support or have questions or just need to unload. I'm so glad to have found this group. Sometimes I have questions and I find that I'm not great at searching out things on line but if I ask someone will have a good answer for me or share a link that's helpful. There are a lot of misunderstandings about cancer and potential cures and why they can't find 'a cure for cancer'.

Take care and keep your chin up and know that you have hope and can beat this.

Jan

Kazenmax's picture
Kazenmax
Posts: 416
Joined: Feb 2016

Thanks so much for the kind advice. Yesterday I spent the evening with my son and daughter-in-law and my two wonderful grandchildren.  And for one night I forgot about the cancer. We laughed and enjoyed each others company. I started out telling my son my fears and he just said well look at us and everything we've been through. We can do this.

I have read lots of inspiring stories here and I will continue to do so.

Thanks,

danker
Posts: 1248
Joined: Apr 2012

It may be a rather bumpy ride, but it is doable.  Take it a day at a time and who knows how many you will have.  Best of juck to you!!

NewHere's picture
NewHere
Posts: 1195
Joined: Feb 2015

For obvious reasons, we never want to welcome anyone.  But it is a great place with great people.  

My diagnosis came out of the blue, in otherwise fine health, just a bit over a year ago.  Had surgery where a good portion of my ascending colon, appendix and part of the abdominal tissue was removed (Stage IIIC, in a ton of lymph nodes), followed by 6 months of chemo.  3 days every two weeks.  (Home pump, hooked up Monday at MSK, disconnect Weds at home).  

No medications, no health issues to speak of beforehand.  Just caught accidently for the most part.  

Get opinions and options.  It stinks to have this dropped on you, but take a breath and pause for a second.  Get at least one more opinion.  Also find the best docs you can.  I am fortunate in that I am close to Memorial Sloan Kettering.  As a courtesy I met with another surgeon first, based on the recommendation of the doctor who performed my colonoscopy.  I immediatelty thought Sloan, but talked anyway.  My primary was making arrangements for Sloan immediately.  I would be in real rough shape right now, if in fact I would still be here, if I went with the first person.  

Instead I am in pretty darned good shape.

Hang in there, it stinks, but you got good things going.  And hang out here, you will get a ton of help, advice and support.

Kazenmax's picture
Kazenmax
Posts: 416
Joined: Feb 2016

Thanks for the advice.  I actually cancelled my appointment for a second opinion. The surgeon I saw is from Mercy hospital. He's also out of Johns Hopkins. Very compassionate. 

None of the doctors have actually confirmed that I will need a permanent colostomy.  They say it's a possibility. 

I think I will start the chemo/radiation and then schedule another appointment. 

Thanks

K

Kazenmax's picture
Kazenmax
Posts: 416
Joined: Feb 2016

Thanks for the advice.  I actually cancelled my appointment for a second opinion. The surgeon I saw is from Mercy hospital. He's also out of Johns Hopkins. Very compassionate. 

None of the doctors have actually confirmed that I will need a permanent colostomy.  They say it's a possibility. 

I think I will start the chemo/radiation and then schedule another appointment. 

Thanks

K

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

I was in your shoes less than 3 years ago. I a guy and was 49 when diagnosed. All of those feeling that you have now are natural, because you are in a survival mode now. But this survival mode is gonna get you through all this. My best advise is don't hold your feelings back and share your scariest thoughts here and at home. You can't and shouldn't do this alone and you have to share the load.

You are gonna get the typical treatment and once you start you are gonna feel much better Especially once they take the cancer out of your body will be a great relief. But they have to kill it first with chemo and radiation so it won't spread. GET AT LEAST ONE MORE OPINION 100%!!! You would even for a kitchen remodel, wouldn't you and this is your life.

I was scared of the colostomy too, but I got used to it by now and you will too if you need it. 

Come back here often and share everything. My first doctor screwed up my medication and the people here pointed it out. They may have saved my life. There is an invaluable wisdom and support here. But take one day at a time. 

All the best,

Laz

Kazenmax's picture
Kazenmax
Posts: 416
Joined: Feb 2016

I will get a second opinion.

Thanks!

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

Hi, I was about your age when diagnosed with a rectal tumor.  That was 6 yrs ago next month.

Like you I was uncertain about what direction to take.

I was offered chemo/radiation with the hope to avoid a perm colostomy.

I opted for surgery only, since there was a possibility of the perm colostomy anyway.

Each situation is different, and I only offer my choices as background, not a recommendation, because that is between you and your doctors.

Like you I was in good health prior to this with no issues.

Having the perm colostomy has not proven to be a problem, just something new to get used to.

If you have any specific questions, feel free to ask.

Wishing you the best,

Marie who loves kitties 

 

Kazenmax's picture
Kazenmax
Posts: 416
Joined: Feb 2016

Right! I just want to get this done! 

All these responses have really helped.

Thanks 

Trubrit's picture
Trubrit
Posts: 5180
Joined: Jan 2013

I am glad you are here. I am glad this forum and its wonderful members helped you to make a decision that may just see you live 'Happily ever after'. 

One of the first questions I had for my Oncologist the day I met him (in hospita after my resection) was, how long would treatment give me? I just didn't want to go through months of chemo and radiation for a few short months of life. So, I know how you felt, initially. 

I am glad that you are moving forward with treatment. It will drag when you are going through it, and when you look back on it, it will seem like a drop of time in the ocean of life. 

We are here to help you through the drag. Most of us have 'been there, done that' to one degree or other, and the rest have watched and supported those they love through to the other side (and I don't mean that 'other side', though some you meet here, have lost their loved ones). 

We talk about all the stuff that normal (yeah, we're not normal anymore) folks wont. Bowels, Bowel movements. We use words others shy away from, like Anus, rectum, incontinence. Everything you are about to go through has been experienced by someone here, so come loaded wtih your questions. 

Talking about questions; one thing that saved my bacon when I went through treatment was a notebook. I would jot everything down. Every little thing I was experiencing, I talked it over with my Oncologist. Some of it seemed ridiculous, but to me it wasn't, at the time. 

We're with you for the long haul. I'm glad you found the forum.

Sue - Trubrit

DaveHereInFlorida
Posts: 48
Joined: Jun 2015

You must fight this on 3 grounds :  Emotionally , physically, and spiritually. You need to live for yourself to remain alive , for the sake of your kids and grandkids , your loving friends, and your siblings.  You must keep in mind that many millions on earth today have a form of cancer they are dealing with and that you are not alone in the process.  Finally, if you so choose to access it, you have the love of our heavenly Father who is the Creator of the universe and creator of each of our anatomical members --- read Psalm 139 for great comfort and just how much you mean to him.  So i hope you will never cave in to the pressure and choose each day to really live  ----   there is a time when we shall all pass from this earth and its troubles....but its not time yet.  You walk with many Cancer companions in this Forum and in daily life.   Bless you as you become victorious more each day.  Dave.

 

 

 

 

 

beaumontdave's picture
beaumontdave
Posts: 1056
Joined: Aug 2013

Everyone here deals with more than they thought they'd have to, after all, cancer happens to other people. One day at a time. Stay in the moment. These are mantras for many of us, because looking very far down the road is scary. Sometimes I wonder how I got this far without giving in or up. We're pretty durable creatures, adaptable to all sorts of stressful circumstances. You can do this, you're  otherwise healthy with good habits and family/support. They need you to try, and we here need the stories of people who fight this crap and continue to live their lives with attitude and commitment. You may grieve the life you had, but this new normal can have great moments amid the tedious and worrisome stuff. Keep reading the stories here, they've done wonders for me......................................................Dave

Sue_2015's picture
Sue_2015
Posts: 19
Joined: Nov 2015

I hear ya.  In Feb 2015 (at age 62) I was diagnosed with colon cancer with liver mets.  No symptoms, no surgeries, and I thought I was healthy except when a colonoscopy found the malignant tumor in my ascending colon then MRI, PET scans etc. showed the giant liver tumor etc.

I try everything they throw at me.  They say I can't have resection of the tumors until they have shrunk small enough.  I had Y-90 to the large liver tumor and it did shrink some, but not enough yet.  None of my chemo treatments have worked (they say, since I have net mets popping up.)  New scans show more new liver mets and possible lung mets.  So I'll be trying new types of chemo and will have more Y-90 radiation to the liver mets one of these days.  We're waiting on the lung nodule biopsy at the moment.

Stay strong and try to keep positive (I know it's hard to do.)

Best wishes and keep up updated!

Sue

 

beaumontdave's picture
beaumontdave
Posts: 1056
Joined: Aug 2013

Keep fighting Sue, you don't know happens, people here bring up new stuff all the time, and there's stories that amaze me as to how they get ahead of this stuff.............................................Dave

Kazenmax's picture
Kazenmax
Posts: 416
Joined: Feb 2016

Right back at ya! Good luck! 

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