Topic: Question

Hello,

I have lingered a lot, not posted much, but read quite often......

My mom had the klatskin tumor removed November 2006.  Did wonderful with the resection, had chemo and radiation and got the all clear.  Last December she had an incisional hernia removed and they did explore everything then and said that things looked good.  She has has cat scans every 4 months and has gotten the all clear.  Yesterday we went for the results of her last scan and the dr. said that the radiologist mentioned a "lymph node" on the left side near her aorta.  The tumor was removed from her right side along with her gallbladder.  The dr did say that every cat scan they have mentioned a "spot" there, but just said that it was probably from surgery, because her incision is very close to the spot.  The dr isn't concerned at all because she said that it would be VERY rare for the cancer to jump from one side to the other, if she was to have a recurrence it would be on the same side as the original tumor.  She said that different radiologists read the scans every time, and they all label things differently.  She said that they don't compare previous cat scans with the newest ones, which I would think would be a good idea.  Mom goes from another cat scan October 1st just to check on things.  She is also going to have them compare all of the scans then.  The dr is very optimistic, but I am worried.  Any advice would be wonderful! 

How helpful it has been to have all of you to "lean" on and learn from  through this rough journey smile.

Thank you so much in advance!!
Amy

Re: Question

Amy....such great news about your Mom feeling as well as she is.  As I have pointed out before...it never hurts to have a second, or third opinion.  It might be helpful to gather her scans and surgery report in order to have another physician look at it someone, of course, who is familiar with CC.  It will put your mind at ease and is well worth the trouble.  Otherwise, I am so thrilled with the success your Mom has had.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Question

Hi Amy, Marion said it all.  Very happy for your Mom.  But like Marion said for peace of mind, have the scans compared.  If there has been no change on any of them, My opinion your Mom would be doing great.  I can't believe the doctor said it was rare for a cancer to jump from one side to the other.  CC can and does jump any place it chooses, close by previous or distant.  You would think some one played pin the tail on the donkey with my recurrence.  Any hoot don't be arlarmed, just compare scans.  I can't believe they don't do that either knowing the history.  The requesting physician can add that to the consult for future scans.  I'm so happy for your Mom and you Amy.  Stay in touch, we love success stories.

Bless Ya!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Question

I too had a "funny" lymph node which turned out to be nothing once they biopsied it. I too think it is odd that they arent comparing scans. I guess if they found nothing then there is nothing to compare it to, but since they found a funny node, you would think they would. It might be a big deal or not, but when you are not a medical professional and when they dont do something you think they should be doing, it can make one panic a little. You might just want that second opinion to ease the mind. Best of luck on it being nothing.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Question

Hi,

Thank you all for your replies.

Mom had her follow up scan yesterday.  The dr called and said that they will do a biopsy next week.  She said that she isn't concerned, but she knew that we were, so they would go ahead and do it.  The spot is less than 2 mm, and it is right where her incision started for the initial surgery.  The spot hasn't changed from the initial cat scan.   I am glad that she is willing to work with us, and do what makes us feel better.
Mom had blood work done last week and we noticed that the liver numbers were up some, the dr said that she isn't concerned about them.  That is usually caused from medication.  Mom also asked if there were any other spots, and the dr told her no.  They are going to start sending a copy of the reports to us at home.

Lots of love to you all.  I will keep you posted....

Re: Question

Amylea,
Best of luck on the biopsy. They arent painful at all (except if they have to push down on the incision line). I do like the sound of your doctor. Sometimes I dont think they understand how much stress we are all under worrying about things.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Question

Hi,

Well, the dr called yesterday and told Mom that it is cancer.  We go on Friday to discuss the options.  The dr. will call us tomorrow and let us know if this is cc again or another strain of cancer.  I am not really suprised, I have read a lot about the stats, just really sad.  Mom is down.  She doesn't want to have to go through all of the trouble again.  I feel so sorry for her.  The dr did say that it is only one spot and the spot is less than 2 mm.  If for some reason they can't do surgery, does chemo and radiation kill the cancer, or does it just put the cancer on "hold"?  I feel good about the fact that this one is small.

Please, if you have any spots, get them tested. 

Thank you all for being her to help. 

Amy

Re: Question

Amy.....so sorry to hear this.  And you are right in feeling good about the minimal size of the tumor.  Your Mom may very well respond to another treatment or surgery, if applicable.  We focused on an positive approach  when new areas of concern arose and continued to look for options coming our way.  Sending tons of good wishes your way and awaiting your report on Friday.
Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Question

Amy,  Sorry to hear the cancer has returned.  2mm spot is very small.  They should be able to deal with it hopefully in a positive manner.  It is a bummer for your Mom.  I know what she is thinking.  It's just not fair and she really hates to think she has to go through surgery again.  Mentally, it is so draining and exhausting just thinking about it.  Maybe cyberknife or PDT might be options, time will tell.  I wish only the best for your Mom and will send plenty of positive thoughts your way.
Bless You Both,
Jefff

Take it to the Limit,One More Time! (Eagles)

Re: Question

Amy,
I am sorry you got the news you (and all of us) didnt want to hear. I also think that you should check out cyberknife. It sounds like it gets such positive results. Stay strong and think positive. Best of luck at the consultation and dont forget that you can ask questions and advocate for your preferred choice of treatment.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Question

Amy,

So sorry to hear that your Mom's cancer has returned. Good luck on Friday. I will be thinking of you both.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Question

Hi everyone,

We went to the dr on Friday.  She was very optimistic.  This is cc again.  The first step is to do a PET scan on Friday to make sure that the cancer is only in this one spot.  I guess that from the scan there are three lymph nodes.  Two of them were two small to biopsy, but they believe that they may be affected also.  If it is contained to this area,  Mom will have chem for two months and then the surgeon believes he can remove the cancer.  It is the same surgeon from the original cc surgery.  The radiation oncologist is on vacation, but Mom has an apt to visit her on November 17th.  Jeff and Kris, thank you for the idea about cyberknife.  IU hospital has a Gamma knife, which is essentially the same thing.  So, we have that as a back up if surgery isn't an option.  So the next couple of weeks will be full of dr apts, but it sounds like we have a plan.

Mom's oncologist encouraged us to visit this site.  She was happy to hear that we aready are members.  I told her that we were already a part of the family smile.

Thank you for your words of encouragement and support. 

Amy

Re: Question

Amy............. Great that you have a plan full of optimism!  Wish you guys the bestest!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

14 (edited by Jean Tue, 21 Oct 2008 00:20:33)

Re: Question

Hi Amy

Wishing your mom only good news from her PET/CT on Friday.  It sounds positive in that it is very small and  the surgeon does think he can resect it after the chemo.  I'm sure it was very difficult though, after two years, to get this news.

You were mentioning that IU has a Gamma Knife.  It does differ from the Cyberknife in that Gamma Knife is used only for brain lesions.  The Cyberknife has the advantage of being able to be used on any area of the body.  I checked for Indiana and three Cyberknife centers are listed:  Indianapolis, Fort Wayne and East Chicago.  If you google Cyberknife, there is an area to search for locations on the web site.

Thinking of you and your mom and wishing for the very best!

Jean

Re: Question

Hi everyone,

Well, got the results from Mom's latest PET scan.  Not exactly the news that we wanted to hear.  There are three spots which showed up on the PET scan.  Here is the information they gave us.... A 1.3 cm left supraclavicular lymph node, a 1.3 cm hypermetabolic para-esophageal lymph node, and a 1.9 cm left periaortic lymph node.  The spots showed up within range, but on the high end.  Mom starts chemo on Tuesday.  She is going to go every two weeks for two months.  She is going to have a port put in this time.  The drugs they are using are Oxaliplatin and Gemzar.  All of the organs are clear.
Anyone have any advice about what is going on?  The doctor has told her that they are confused about all of this, which makes me a bit nervous, but we trust her, so we are going to go with her advice.

As everyone knows this seems like it isn't even happening.  I can see how the thoughts about what is going on can totally overtake your life.  I could be sad all of the time, but I know that isn't healthy for any of us.  Do you just have to come to grips with the fact that you or someone you love are going to live with cancer?  We can't let it overtake our lives, but right now I don't know how to do that.

I am so thankful to have you all as a part of our life.

Thanks a bunch, Amy

Re: Question

So sorry about your Mom's PET Scan results. Teddy gets his results Nov 6th. Cancer redefines your whole life! Everything you feel is absolutely normal. For us it has just become our way of life. We live for the good days and on a bad day we also look forward to a good day. Teddy believes ATTITUDE is everything. A positive attitude even when things look darkest helps one mentally as well as physically. We have no pity parties. And yes, it becomes your way of life. Its all in how you handle it that makes the difference. As much as Teddy has been through he is still doing very well compared to most. I know that the real tough times are yet to come. We try to be optimistically realistic. We talk about it a lot  but never in a negative way. I have found it easier to just be open with everyone about it. It also helps to write things out on this board and I am always sending updates by email to friends and family. The more I can express it all the better I feel. In the end yes, the thoughts overtake your life, its what you do with those thoughts that count. Stay strong!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.