Scan had concerns - very discouraged

barbebarb

Well returned from my CT and Dr.'s visit and radiologist had not read report. She said she had concern about the liver -a spot in the same area of last tumor removal. The liver surgeon had already called her to say he could do surgery again. She mentioned some type of radiation procedure to burn the tumors starting with an S if possible as another option and the fact of my age.
There was also had a lung nodule they were going to check. I have a call in to the Dr. to discuss once the report is read by the radiologist.
I am very discouraged and wasn't sure what to ask, didn't even ask about bloodwork. Just felt shocked.
My son 23, was with me.
Have to get a pet scan next Tues., and am more afraid of more showing.
Its almost better, I guess, to not have any comments until full report is received.
I returned to work in Sept. full -time and feel very good and have been bikin.g for exercise. Guess I am posting for some kind of encouragement.
I am really feeling my journey may be not as long I had hoped after two surgeries and chemo this past year.
Hoping others scanning this week had positive results.
Thank you for letting me share my feelings.

Barb

Lovekitties

Dear Barb
I know how disconcerting all this can be. I am a bit surprised that your doc said anything at all without the radiologist's report. Which CT scan(s) did you have (chest, abdomen, pelvic)

You mention that you are to have a PET scan next week. Did doc say why it is needed after the CT scan?

Don't let this latest news have you start mentally putting a limit on the length of the journey of life.

You still have options. You still have hope.

Prayers and hugs that things are not as bad as you seem to think and that you can mentally and emotionally gear up again.

Hugs,

Marie who loves kitties

pete43lost_at_sea

sorry barb, your son and exercise
dear barb,
i hope you get some positive news. its good to share our feelings, and then we can get on with enjoying today.
i liked that your son was there to care for you, how special.
i also like the fact you were exercising, i should restart the exercise post.
smile as soon as the unpleasant feelings have gone, hopefully something wonderful in your life will happen and you will even forget about the c word for a while.
hugs,
pete

annalexandria

I'm sorry the news wasn't better...
hopefully when the radiologist takes a look at things, you will get a clearer answer, maybe even something a little more positive. I don't know about your doc, but mine hasn't been all that accurate when it comes to reading scans. But if it does turn out to be more cancer, you can take hope from the fact that it took 5 surgeries for me to get to NED, and my mets tended to pop up in the same area each time. I'm not sure if it's connected, but i did use cimetidine before and after my last surgery, and i haven't had anything new turn up since then (last December). Might be worth trying this yourself if you do have to do another surgery. Keep us posted, we'll be thinking of you! Ann Alexandria

barbebarb

pete43lost_at_sea said:

sorry barb, your son and exercise
dear barb,
i hope you get some positive news. its good to share our feelings, and then we can get on with enjoying today.
i liked that your son was there to care for you, how special.
i also like the fact you were exercising, i should restart the exercise post.
smile as soon as the unpleasant feelings have gone, hopefully something wonderful in your life will happen and you will even forget about the c word for a while.
hugs,
pete

scan and no report
Yes, My scan was abdomen, pelvis, chest ans tri -phasic view of the liver. I saw her APN the last 3 visits. Guessing that's because the scan was clear at end of August and I had no problems with bloodwork.
The APN is calling me back with the full report. I am waiting.
My doctor mentioned SBRT to burn the lesion but I wonder if that's viable knowing this appeared after August scan. It seems like quick growth? Is this cyberknife?
I do feel fortunate that I feel strong and can exercise but have concerns like everyone about being NED etc
My oncologist said it would be best to get the pet scan to see how this lesion lights up? I would suspect she may want to check the lungs, too?
It makes your mind race when therapies are thrown at you without the whole report.
I am trying to not let my mind go as dark as it did during treatment but I would have liked more accurate information for a small peace of mind.
Thank you for your support.
I find these boards more helpful than my local support group.
Thank you and I will return once I know more.
I am being treated at N. Western Memorial in Chicago and they are always so busy. Its like a cancer factory when you go there.
I know that sounds terrible.
Barb

barbebarb

annalexandria said:

I'm sorry the news wasn't better...
hopefully when the radiologist takes a look at things, you will get a clearer answer, maybe even something a little more positive. I don't know about your doc, but mine hasn't been all that accurate when it comes to reading scans. But if it does turn out to be more cancer, you can take hope from the fact that it took 5 surgeries for me to get to NED, and my mets tended to pop up in the same area each time. I'm not sure if it's connected, but i did use cimetidine before and after my last surgery, and i haven't had anything new turn up since then (last December). Might be worth trying this yourself if you do have to do another surgery. Keep us posted, we'll be thinking of you! Ann Alexandria

Thank you
Appreciate all your kind words....I know I have to be patient and appreciative of my 3 months of no treatment.
What is cimetidime? I remember reading on your post.
Well back to waiting from the APN...they are flippant (onc.'s) sometimes when they review the images, as well as each radiologist looking for more things or an emphasis on another area.
Thank you for your post. Is helping me stay somewhat calm.... :-) hugs! Barb

Annabelle41415

Scan
You should probably wait until the full report comes through along with the results of the other scan and then discuss both with your doctor. I'm surprised that you are not seeing your doctor and only a nurse (take it that is what APN is). I've never gotten any of my results from any nurse. Hoping that the scan next week goes well for you and they find it very treatable and is minor surgery. Hoping things turn out better in your next report.

Kim

barbebarb

barbebarb said:

Thank you
Appreciate all your kind words....I know I have to be patient and appreciative of my 3 months of no treatment.
What is cimetidime? I remember reading on your post.
Well back to waiting from the APN...they are flippant (onc.'s) sometimes when they review the images, as well as each radiologist looking for more things or an emphasis on another area.
Thank you for your post. Is helping me stay somewhat calm.... :-) hugs! Barb

Scan update
Well bloodwork ok, cea 10.9, Upper right lung lobe nodule went from 4mm to 5mm, and tiny mass in left liver lobe (2nd surgery removed tumor in this area) and small mass in right lobe. Info plus pet scan result will go to tumors board.
Guessing a 2nd line chemo and possible surgery?
Have to absorb all of this. Not quite ready to gear up for fighting yet...
ugh

barbebarb

Annabelle41415 said:

Scan
You should probably wait until the full report comes through along with the results of the other scan and then discuss both with your doctor. I'm surprised that you are not seeing your doctor and only a nurse (take it that is what APN is). I've never gotten any of my results from any nurse. Hoping that the scan next week goes well for you and they find it very treatable and is minor surgery. Hoping things turn out better in your next report.

Kim

Thanks Kim
I am guessing they really cant do much else until all reports are in. My oncologist has her Advanced Practice Nurse meet with patients at times.
I may contact my oncologist after P E T results are in.
Its a waiting game now.
I just wonder if this is a very bad sign to have it return after chemo stopped 8/1....
Anyways, thank you for your support.
I hope you are feeling well from your recent surgery.

annalexandria

barbebarb said:

Scan update
Well bloodwork ok, cea 10.9, Upper right lung lobe nodule went from 4mm to 5mm, and tiny mass in left liver lobe (2nd surgery removed tumor in this area) and small mass in right lobe. Info plus pet scan result will go to tumors board.
Guessing a 2nd line chemo and possible surgery?
Have to absorb all of this. Not quite ready to gear up for fighting yet...
ugh

I know the feeling...
it's so hard to get mentally prepared to face tx and surgery yet again. Cimetidine is also called Tagamet, and is an over-the-counter medication (an antacid I think?) that has been shown in a number of studies to reduce the ability of cancer cells to spread during surgery. Surgery tends to hold the greatest hope for a cure, but at the same time it can spread the cells around. For example, my last surgery was to clean up a tumor in the abdominal cavity that my surgeon was pretty sure was an escapee from the previous surgery...based on where he had operated during the 4th go-round, and where the new tumor was located. You could tell the little sucker had just dropped down from the intestines up above and planted itself in the cavity, next to my ovary. When he removed this one, I took cimetidine for a week before and a week after surgery, and although I have no way of knowing if it worked or not, I seem to have not had any spread this time (fingers crossed on that one). I think this is in the category of "can't hurt, might help". If you want more info, just google it. There are quite a few references on-line to the studies that have been done. Hugs~Ann Alexandria

janie1

barbebarb said:

Thanks Kim
I am guessing they really cant do much else until all reports are in. My oncologist has her Advanced Practice Nurse meet with patients at times.
I may contact my oncologist after P E T results are in.
Its a waiting game now.
I just wonder if this is a very bad sign to have it return after chemo stopped 8/1....
Anyways, thank you for your support.
I hope you are feeling well from your recent surgery.

Hey Barb
I know this is frustrating to say the least. Recurrences this soon is not uncommon. And this can still be controlled. You have to go after the buggers, one by one.

Ann is spot on. Really consider the cimetidine. There are papers on it since 1987 (?), giving very positive data. If the least you do is go on it before and after surgery, it could really help, but then we never really know.....but so what. I could kick my self every day for not using it for liver surgery. At the time, I thought it had to be given during surgery via IV, and I started to ask the surgeon about that, but I stopped, because I figured he would think that was just an "alternative" thing. Boy, was I wrong, as I later researched more about it.
Anyway, I'm not sure about it if you had radiation to the liver spot....but I would ask around and probably couldn't hurt anything. Also, i think cimetidine can be given IV during surgery, too....just have to have a knowledgeable doctor on that. I didn't.

You can do this.

joan

Chelsea71

janie1 said:

Hey Barb
I know this is frustrating to say the least. Recurrences this soon is not uncommon. And this can still be controlled. You have to go after the buggers, one by one.

Ann is spot on. Really consider the cimetidine. There are papers on it since 1987 (?), giving very positive data. If the least you do is go on it before and after surgery, it could really help, but then we never really know.....but so what. I could kick my self every day for not using it for liver surgery. At the time, I thought it had to be given during surgery via IV, and I started to ask the surgeon about that, but I stopped, because I figured he would think that was just an "alternative" thing. Boy, was I wrong, as I later researched more about it.
Anyway, I'm not sure about it if you had radiation to the liver spot....but I would ask around and probably couldn't hurt anything. Also, i think cimetidine can be given IV during surgery, too....just have to have a knowledgeable doctor on that. I didn't.

You can do this.

joan

This is something that I
This is something that I feel sick about. I often wonder if my husband, Steve, had taken cimetidine prior to hipec, maybe he wouldn't be having this liver problem now. I wish I would have found this site before his operation.

Chelsea

barbebarb

Chelsea71 said:

This is something that I
This is something that I feel sick about. I often wonder if my husband, Steve, had taken cimetidine prior to hipec, maybe he wouldn't be having this liver problem now. I wish I would have found this site before his operation.

Chelsea

Appreciate all your direction
Going to ask about this -thank you.
Will post later and will need encouragement - thank you! Thank you!

janderson1964

Your discouragement is
Your discouragement is understandable. Both of my recurrences were right next to the site of the previous surgeries. The last recurrence really hit me hard but here i am a year later done with treatment again and NED again. You will star fighting again once the initial shock wears off and you and your doctors form a plan of attack. I am here to tell you that after 7 years and cancer 3X I am fighting harder than ever.

Sundanceh

Here's an Encouraging HUG
((((Barb))))

Now, we'll just wait to fill in the rest of the blanks:)

I just wanted to say that I very much appreciated your candor on your family post...I believe that hearing other's perspectives always lets us know that there is "more of us" out there...the difference always lies in the telling...and most people never do.

Which always leads to the false assumption that we are the only ones...

That's why I like to tell...and to share...and to talk about it.

That's how we learn...through one another's examples...and that helps us in forming a framework, which also helps us keep our perspectives in the proper context when we find ourselves veering towards the ditch.

This board has taught me that loving families do exist...it's taught me that there are loving spouses...and it has also validated to me that other's don't always get what they should have.

I never had it growing up...not really. so in alot of ways, you never even knew that you missed it...until you stare through the looking glass and see other's experiences.

Early on, I must be honest and say that reading all of that, genuinely hurt me; still does, I suppose. It's not that I'm jealous...or even envious...those are the bad emotions.

No, it stems from a much deeper source...its roots are born into what I like to call The Intrinsic Values.

It is human nature to want what the other fella has...but this is not about materialistic possessions. This is about the basic human needs that we should all have...and when we don't have it...we "Yearn" and "Long" passionately for that, which we will never be able to taste.

I guess that's where it's at for me.

I can't change the past anymore...the 2 family members who I held the dearest...my sister and uncle are in the ground...what's left of the leaky umbrella that fabricates itself as 'family' wouldn't keep you dry in a wind storm.

I've still got my wife...last year's battle nearly broke that in 1/2...and I've got my niece and nephew and their little darlin' girl...on my wife's side...in another state...but it looks to some degree that I have some kind of connection with them.

Little Miss Sunshine...who just turned 3 years old, was upset that I would not be able to come see her for Xmas...I joked with her that I just didn't have a place to sleep.

You know what she told me, Barb?

"You can sleep in my bed..."

I mean that gets to me even...she's so sweet and innocent.

I don't have them to sustain me since they are out of state...and I can't be there the way I want to be for them either...not right now.

I think all that any of us really want from the people in our lives is Love and Companionship...combined with Validation and Support.

When we don't have it...and see others having it...what I like to refer to as those Common Chords of Humanity, that all of us should be privilege to...well, it just makes us sad.

And it makes our road a little bit harder to drive than the other guy...we've just got to overcome that much more so that we can be.

But, still we persevere...and still we shine...and whether we're muttering under our breath...or through The Lion's Roar...we say, "Up Yours."

I'm wishing you the best in your fight, Barb...I just wanted to thank you once again for sharing...everyone calls it venting...I like to see it as "Expression."

-Craig

P.S. I've always felt that I had alot of love to give - and was always looking for ways to give it away. And for the people that don't want it...I'll just head up the road apiece and try and peddle it up there.

I'm OK - You're OK!!!!

barbebarb

Sundanceh said:

Here's an Encouraging HUG
((((Barb))))

Now, we'll just wait to fill in the rest of the blanks:)

I just wanted to say that I very much appreciated your candor on your family post...I believe that hearing other's perspectives always lets us know that there is "more of us" out there...the difference always lies in the telling...and most people never do.

Which always leads to the false assumption that we are the only ones...

That's why I like to tell...and to share...and to talk about it.

That's how we learn...through one another's examples...and that helps us in forming a framework, which also helps us keep our perspectives in the proper context when we find ourselves veering towards the ditch.

This board has taught me that loving families do exist...it's taught me that there are loving spouses...and it has also validated to me that other's don't always get what they should have.

I never had it growing up...not really. so in alot of ways, you never even knew that you missed it...until you stare through the looking glass and see other's experiences.

Early on, I must be honest and say that reading all of that, genuinely hurt me; still does, I suppose. It's not that I'm jealous...or even envious...those are the bad emotions.

No, it stems from a much deeper source...its roots are born into what I like to call The Intrinsic Values.

It is human nature to want what the other fella has...but this is not about materialistic possessions. This is about the basic human needs that we should all have...and when we don't have it...we "Yearn" and "Long" passionately for that, which we will never be able to taste.

I guess that's where it's at for me.

I can't change the past anymore...the 2 family members who I held the dearest...my sister and uncle are in the ground...what's left of the leaky umbrella that fabricates itself as 'family' wouldn't keep you dry in a wind storm.

I've still got my wife...last year's battle nearly broke that in 1/2...and I've got my niece and nephew and their little darlin' girl...on my wife's side...in another state...but it looks to some degree that I have some kind of connection with them.

Little Miss Sunshine...who just turned 3 years old, was upset that I would not be able to come see her for Xmas...I joked with her that I just didn't have a place to sleep.

You know what she told me, Barb?

"You can sleep in my bed..."

I mean that gets to me even...she's so sweet and innocent.

I don't have them to sustain me since they are out of state...and I can't be there the way I want to be for them either...not right now.

I think all that any of us really want from the people in our lives is Love and Companionship...combined with Validation and Support.

When we don't have it...and see others having it...what I like to refer to as those Common Chords of Humanity, that all of us should be privilege to...well, it just makes us sad.

And it makes our road a little bit harder to drive than the other guy...we've just got to overcome that much more so that we can be.

But, still we persevere...and still we shine...and whether we're muttering under our breath...or through The Lion's Roar...we say, "Up Yours."

I'm wishing you the best in your fight, Barb...I just wanted to thank you once again for sharing...everyone calls it venting...I like to see it as "Expression."

-Craig

P.S. I've always felt that I had alot of love to give - and was always looking for ways to give it away. And for the people that don't want it...I'll just head up the road apiece and try and peddle it up there.

I'm OK - You're OK!!!!

Hug taken!
Craig - You said it all so well.

Its taken this scrappy cancer, counseling, and way more heartache over the years to realize I have a lot of love to give and have tried with family.

Luckily, I have friends who have really been here and have tought me to ask for help.

I know I have to remain steadfast now to fight for my life. My young adults are "getting it " and I have to stay strong. It is hard. I find myself at times pondering about life, love, and relationships....I am an only child so I really have to hold tight those relationships that are not toxic.
Last weekend we had to put our 11 year old Sheltie down. It was time, he was sick....another very strong love that was holding us together.

I am kind of rambling here but emotions can be so raw with this cancer journey.It is self destructive to look at others and think its easier for them, while human nature dictates us to complain about trivial things at work or home.

Well I am rambling but thank you for the "I'm OK your OK "

That is very neat what your neice said -heart warming.Go with the connection. Its there!

(())'s to u!