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scan results - hat in the creek

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

On Monday I had my first ct scan since HIPEC/rectal resection/ liver ablation surgery in April. The results are disappointing. Several more tumors in the liver. The cancer has also spread to my lungs. Many spots in both. The doctor said, "I just stopped counting." The good news is that all of the spots are less than 3mm.

I knew going in that six months of Folfox and one surgery was probably not going to do the trick, but I am surprised that the cancer spread so quickly. I really thought that the scan would show a lot of scar tissue and not be very conclusive. I was wrong.

I was already planning on doing six months of Folfori; so my treatment plan is unchanged by the scan results. My doctor said that people who have a good response to Folfox usually have a good response to Folfori. The incision/wound should be healed enough by the end of August to start chemo. Aside from the wound I feel very good. I have lots of energy. My muscles, especially my abs, hurt like hell when do anything, but that will get better with time. I was having a "depressive episode" earlier this Summer, but I've worked through it with a great cancer psycho doc at the cancer center.

I still consider the surgery a success. It got rid of the tumors in the peritoneal lining - hopefully for good. Peritoneal mets don't respond to iv chemo very well. What was left of the primary tumor is gone. There is a lot less cancer in my liver. Even if I didn't think the surgery was successful I'd still say it was the right thing. I'll always do the most aggressive treatment that I can. The scan results were a bit of a jolt, but nothing has changed really. The chance of cure is slim, but I know from folks on this board that it is possible. The chance to manage this disease for years is pretty good. I also know that from folks on this board.

I've had a few good boo hoo sessions. That's over. I've been in recovery mode long enough. That's over. It's time to build fires and talk to crows again. It's time to fight. It's time to go kill some bastards. It's also time to start living again. I can't do everything I want to do, but I can do everything I need to do - everything my family needs me to do. Also, I feel like I owe it to Brant, Christina, Kimby and so many others who aren't with us anymore to fight hard and live well.

This board continues to be a place of strength and inspiration. Thank you all.
Sending you all sparks of hope and happiness. Roger

Lovekitties's picture
Lovekitties
Posts: 3330
Joined: Jan 2010

I am so sorry the news was not better, but glad that not only do you have a plan but the attitude to make the best out of every day and keep the monster at bay.

Living well for ourselves and those dear to our heart is the best thing we can make of every day we are here.

I hope the treatment plan works well on the remaining cancer.

To better health for us all,

Marie

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Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I'm glad to hear the peritoneal mets are gone! Sorry to hear you have new liver and lung mets, but as you said they are small, and you'll start a new treatment. I hope FOLFIRI wipes them all out! Between a new treatment option and your attitude, you've got great chances.

AnneCan
Posts: 3692
Joined: Oct 2009

I am really sorry the results weren't better at this time. Now it is job of the chemo to do its work, as well as the strength you have demonstrated here so often (+ good sense of humour too!) It sounds like there were some good reults too - primary tumour gone, peritoneal cancer gone, liver burden reduced. Keep sending those sparks!

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Roger,
My young friend we are fighters. We can do this. Keep that great attitude and it will keep sending “placebo effect” throughout your system.

Remember I have your log to burn this winter to send a hell of a lot of sparks up the flu pipe.

Kerry

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

I have mixed emotions reading your post. I find I cry easily these days and I visit this board daily. Reading the posts here just breaks my heart and reading yours tears me up. You know, I have been rooting and praying for you since the day you came online and I check this board daily to see how you are doing. I was so hoping and praying that your mother of all surgeries as it is called was the cure for you. But I also know this disease is a beast! And I mean a beast.
Yes, keep fighting. Fight on and bring it on as my sister used to say. Keep hope alive and yes, you can manage this disease.
You are one heck of a fighter and your spirit and positive attitude is amazing. You continue to be an inspiration for everyone on this board. And I continue to hold you in my thoughts and prayers.
Hugs,
Marie

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Roger,

I'm sorry to hear the cancer has spread to the lungs. My lungs are in the same situation- many small tumors in both lungs- I've been that way since diagnosis.
The chemo has made them not light up a couple different times on the PET scan, but they've not actually gone away ever. They have, however, still remained under 1 cm since the 3 years I've known I've had them with ongoing chemo. Kind of like a chronic thing, I guess. I've never had any shortness of breath, wheezing, coughing, or any issues at all due to the lung tumors. It amazes me, actually, that they're all still in my lungs and I would never know it if I hadn't seen the scans.

Wonderful that the HIPEC got the peritoneal tumors! Glad that was a success!

I know it's a major bummer, but you can do this and I bet the Folfiri will do lots to kick all the tumors' butts! Hopefully the Folfiri will also do in those nasty new lung tumors. I think I had probably had mine quite a while before even knowing it- maybe that's why mine are more stubborn. Since yours just popped up, maybe the chemo will be able to work on them more effectively.

Try to relax and recover until chemo time.

Praying for you to discover blessings from God in new ways-
Lisa

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I got your hat, and although it may be a bit wet, it's good for a few more years!

Here's to you!

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

but you'll keep fighting! You've shown the beast just what you are made of and that you don't take things lying down. I'm glad you are moving on to healing and getting into the fight mode, which it sounds like you'll need. Keep strong and remember all your blessings.
mary

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Roger,

We have never met... I've been away from the boards for awhile and have come back to join in on the support, chat and fun with a great gang of folk who know exactly what we are going through, even if we aren't all going through the same thing. The one thing we all have in common is we are either fighting a battle, or we are caring for someone who is fighting the battle.

Now, it's a given that whenever you get results from a scan/blood work/etc. that aren't what you WANT to hear/see, then disappointment sets in real quick... so quick that for the rest of the appt. you don't really hear what is being said or can read between the lines. That disappointment can appear physically... it feels like someone has kicked you in the gut. As soon as the news is "well, there's more here, and some new ones there, and it's gone to the lungs... so now we are talking lungs and liver and possibly organ X. Prognosis is not good... you are definitely a stage IV which is incurable." Whenever I hear anything similar to that after any of my results I do get the immediate physical feeling that, "Sh*t! This time might be it... this could be the end!" and then that horrible fear sinks in. When my onc goes on to say, "So what we are going to do now is ..." all I hear is "blah, blah, blah". I can't concentrate on the 'what we are going to do' because I'm too busy feeling the fear that I may die soon. It usually takes me awhile to snap out of that fear and start thinking more realistically.

For instance... how do you feel right now? Do you find yourself not able to breathe without the help of oxygen or equipment of some sort? No? Ok, how about your energy level... keeping in mind that it won't be quite up to normal because you had some pretty intensive surgery back in April and you have to give yourself at least a year before you can start expecting to have the energy you had before all of this happened. But if you look at how you are feeling right now, I think you wouldn't be wrong to say your energy is just fine. You can get from point A to point B without shuffling along as if you are about to take your last step. So energy is fine, breathing is fine, your mind is definitely fine, so you are not a likely candidate to pack it in at this point or in the near future ;)

So, what to do? Well, forget about all those tumours... whether you have 5 or whether you have 65... there is evidence that the disease is still in your body, but you already knew that, so that shouldn't come as a surprise. The fact they are growing... well, thank goodness for modern technology that we can even know that there's a problem there before they have gotten so big nothing can be done. It was a sneak attack that you did and found their hiding places.... now you must rally the troops and go in with all guns blazing. Zap them with the chemo big time and while the chemo is killing off these "multiple" tumours, or at least shrinking them down and stopping their growth, the chemo will be systemic and will kill off any solitary cancer cells that are roaming through your blood system, trying to find a place to call a home.

While the chemo does it's thing, your job will be to keep the host site (that would be you) happy, healthy, strong, warm and a good host for the battle that is going on inside. As the cancer shrinks and weakens, if the body remains strong and in good fighting form, the cancer won't stand a chance of surviving the chemo AND a healthy strong body. This also means keeping the immune system in good working order... all of this relying on good nutrition, exercise (however much you can do, even if it just means getting outside in the fresh air and going for a walk), and a positive 'tude that you are on the winning team :)

Dwelling on how these tumours arrived quickly, are growing quickly and the thought that there are a lot of them and it's just not fair, isn't doing any good... it's giving cancer the upper hand because it weakens the body and the immune system if you live in worry and fear.

Know you are not alone in your battle! We all may be fighting separate battles, but we all are there for each other, even if it is being there "virtually"... and part of the magic of the group is you really can refresh your reservoirs with positive energy that you can get from this support group. Fill 'er up, and you'll be on your way to a win!!

Cheryl

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Oh, Roger.

I'm very sorry you got such disappointing news. You're such a wonderful person! Hang in there and tell cancer you're coming after it big time!

*hugs*
Gail

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

so sorry that you got those results from the scan. I'm glad for you that they got rid of the cancer in the peritoneal lining. Holding you in the Light for healing and strength and cheering you on for the fight!
`Aud

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

CAW!!! CAW!!! CAW!!!! There...now that we talkin the same launguage............ Dude, you a man with a plan.... enuf said..... besides It looks like we BOTH be back in the buggger b'ness... LOL

jennie

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Roger,
I have been thinking of you. Good news about the peritoneal mets being gone. However, I am very sorry to hear that there has been spread in your liver and lungs. I'll keep you in my prayers. You are a strong fighter.

Aloha,
Kathleen

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

Sorry to hear of the results, love your attitude, you are an inspiration and a warrior, keep up the good fight. Fck cancer.

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

You have gone through so much, I pray you get over this new hurdle. Like with everyone on here, I admire your fighting spirit. Grrr I hate this disease!!!!!! sorry thinking out aloud there lol

greybeard64's picture
greybeard64
Posts: 254
Joined: Mar 2010

I know I am just repeating what so many have already said, but...
We care about ya bud, you are definetly a fighter, and your positive evergy is a model for others. Hang in there, and know you have many here who carry you in their thoughts and in their hearts.
Chris

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