Just got PET scan results..... I am a mess.... HELP ME!!!!

kimby

Paula G. said:

I got my husband involved in this club (JR). He was DX last October. Very much the same feelings you have. It is so hard to wrap your head around finding out you have cancer. Are family was in shock. Take the advice from these people in the network. They are living and you will too.
My heart goes out to all of you. I thank you all for being here for each other.Paula G.

Paula G
Paula,

We aren't just here "for each other", we're here for YOU and JOHN, too. I'm so glad you're here and have found us helpful.

Hugs,

Kimby

dixchi

I"m Still Here
Jennie, I know how you feel.....and you have received many
good words here but since I have recently gone thru this,
thought I would add my story. Was diagnosed in 2004 with
Stage 2 colon in section close to appendix, had resection,
no chemo recommended......thought it was all over.....then
in 2008, a met was found in my liver which was very large,
....what??.....I got 4 Folfox treatments....which apparently
liquified the tumor and made it appear even larger on a
scan....first report from oncologist was that tumor had
gotten larger when actually it had not shrunk but melted....
the surgeon and all of us were hoping not to take so much
of the liver but when it was all said and done, my right
lobe was removed, 50% of liver.....I made it through surgery
and 8 more Folfox rounds and here I am at this moment NED
and feeling great......it was truly the most terrifying time
of my life especially since I was found in such an early stage
and expected no more events....since then I have learned that
this is a journey which will have some bumps in the road.. there has been so
much improvement in treatment....and I expect to be around for
a long time to come and the longer I am around, the more
improvements in treatment there will be.....so hang in there,
YOU CAN DO THIS!

Huggs,
Barbara

Paula G.

kimby said:

Paula G
Paula,

We aren't just here "for each other", we're here for YOU and JOHN, too. I'm so glad you're here and have found us helpful.

Hugs,

Kimby

Thanks
Thanks for your responce, Kimby. It was appreciated. Paula G.

Nana b

These are all great posts!
I went in for my 4 week after-surgery pet scan and although a couple places lit up on the pet, one on the liver and one on a lymp node, they are both very small and the oncologist thinks they may be afer affects of the liver resection. I am starting my next six treatments of chemo and then wil have a pet scan done end of August.


For now still healing from the liver resection and watching my hair fall away....:-(

But, all is good and remaining positive that the lit up spots will just go away!!!

Hang in there, and this is really a great group. I don't post much, but I read a lot, very imformative info and all about what we are going through.....live life to the fullest.

Diagnosed 11/2008, colorectal sugery 11/08, liver resection 4/2009.

scouty

Foxy 16 years!!!!
Ron,

I mentioned Foxy as one of my inspirations on another thread just a few weeks ago and lo and behold she responded and reminded me how bad my chemo brain was. She is now 16 years NED (stage IV). Amazing and a great story for us all. Stacy who is another of my stage IV inspirations is out of town this weekend but she is nearing 8 years.

Jennie, there are many people that come here while in treatments but once they hear NED and get back to their lives, the don't visit as often, if at all. There was a thread a few weeks ago "calling all semi-colons" that some people responded to that have not posted on here in at least a year, some several years.........

One of my CSN sisters says it's like we "graduate" after a few years of being NED. The treatments change over time too so being able to help changes too.

Hopefully after our US holiday weekend, you'll hear from many more.

Keep us posted and you are right, fight, cancer cells hate that!!!

Lisa P.

PS. I also wanted to mention that this site was not around 10 years ago and the internet was nothing like it is now. That also has a great deal to do with not seeing many "longer survivors".

shmurciakova

One More!
Hi Jennie,
I just wanted to add one more story to your list. I was diagnosed Stage III over 7 years ago now. I did one round of chemo after my initial colon resection and at the very first checkup following 6 months of chemo I found out there was a tumor (one) on my liver. I was devastated just like you so I know how discouraging it is..I then went to MD Anderson for my surgery followed by more chemo.
Honestly I would suggest you get that thing removed. Hopefully that is what your doctors at CCA will recommend.
Anyway, I also later had surgery to remove 2 nodules in my right lung. That was over 4 1/2 years ago. Lisa P. and I are both approaching the 5 year mark of NED. Please don't despair! Change "What if I die?" into "What if I LIVE" and believe it! You have a very good prognosis still even though it is "Stage IV". Can you be cured? You bet!
Best Wishes,
Susan H.

serrana

Stage Fouring
I have just read all the posts and agree totally with everyone.
Was dx stage 4 8/08 after a met was found by PET in my lung 6 months after my rectal surgery( no tumor found after pre surgical rad/chemo) and 4 months of folfox to mop up. I felt the same way you do at first when they announced the met. .... you are "normal" in your panic

However, panic not, dear survivor. Take these posts and read them daily as I think they are all too true. My oncologist ( a famous gi onc at an NCI cancer center) fueled my despair by changing his demeanor immediately and putting on an Eeyore face mumbling about "advanced disease" yadayada moan and groan. That approach does NOT HELP. We MUST be with doctors who are supportive, positive and caring and not burying us. ( I changed docs)

In addition to going to an NCI cancer hospital( do not go anywhere else oh please) for treatment and having a supportive positive caring doctor many things are in your control to help your body......... exercise daily, avoid of negative emotions, avoid ALL processed food and ALL sugar and sugar substitutes except stevia for example.Consider acupuncture. Essentials are prayer and good supportive friends/family . If friends/family aren't positive cheerleaders, broom them, as they will drag you down and contribute nothing to your wellness. Read everything that Bernie Siegal, MD has written and believe that you will survive. Be at peace knowing your body will do everything to stay well.
Serrana

amcp

There is HOPE
Jennie..I am amcp that Buzzard wrote about. In 8/06 my husband had a colonoscopy and was told at that time he had cancer and it had been there a long time. We were later told he was stage 4 colorectal cancer with mets to the liver. In 9/06 he had a coloscopy done and was given a permanent bag. The oncologist that came to the hospital told my husband and I that if he did not have chemo he would live 6 months maybe...if he had chemo treatments he could possibily live 2 years. So chemo after chemo for over two years, mets growing on liver, CEA going higher and told all along this was pallative care. In 12/08 our oncologist said there was nothing more he could do for my husband ...nothing was working and there was now a nodule in his right lung. Our medical oncologist said he wanted us to go to Vanderbilt in Nashville to see if my husband qualified for a clinical trial. Our appt was on 12/29/08, our oldest son drove us the 3 plus hours to Nashville TN to meet with the Medical Oncologist Dr. Laura Williams Goff. After receiving all his records and copies of all his PET scans, CT scans, and radiology reports she said that he qualified for Phase 1 which is strickly experimental. Medication which has never been tested on humans...only on human cells etc in the lab. We drove home to wait for her to contact us for a clinical trial. Not excited but better than nothing. A week or so later, she called stating that after taking my husbands records before the board that meets on every patient, she felt that he was NOT a candidate for clinical trial but WAS a candidate for liver surgery. Sent to see a Liver Surgical Oncologist named Dr Alexander Parikh. He said YES my husband was a candidate for liver surgery resection but since he had a nodule in his right lung that had to be taken care of first. We were then sent to DR Eric Lambright a Thoraci Surgical Oncologist. He ordered more test and another CT scan. The nodule lite up which more than likely meant cancer. My husband was a smoker and had smoked for 45 years...my husband is 62. Dr Lambright said he could remove the cancer but that my husband had to quit smoking and after two weeks they could do surgery. My husband quit smoking that night cold turkey and has not smoked any since then. So on Feb 10 my husband went into Vanderbilt for a right lung resection..the plan was to take the upper lobe of the right lung and look through the lung to make sure there was no more nodule or anything that looked like cancer. My husband only had to have a 4% wedge taken out of his right lung with no other cancer found. After recovering for 6 weeks, we then went back to meet with Dr Parikh about the liver resection. Surgery was scheduled for April 29. They were very worried ..cancer had grown and multiplied..CEA was over 16,000. and my husband was not in great shape after two plus years of chemo and lung surgery. We (the family and him) were not sure that he would even make it through the surgery. After 7 hours plus of surgery, 7 units of blood, 4 units of plasma, removing the gallbladder, repairing his stoma, removing the cancer that had grown and attached to his diaphram, removing 75 % of the right lobe of the liver and several cancers on the left lobe of the liver, he made it through and was put in intensive care. Doctor came out and told us he now had a 1 in 3 chance of never having any more cancer EVER, 1 in 3 chance of if cancer returns it would be treatable and or operatable, and 1 in 3 chance of it taking his life. 2 out of three is not bad when you came with No Hope for over two plus years. He was in the hospital just 6 days and then released. It now has been 3 weeks since his liver resection...he is my miracle man. He has good days and bad but he is doing great. We are on cloud 9...from no hope to having no cancer is amazing. We believe definately in second opinions and in going where they specialize. Even though it is a 3 plus hour drive each way..we will continue to follow up there from now on. The care we received was unbeatable. Also the cancer society has what they call HOPE LODGE where you can stay free of charge when coming in for appt and treatment, you only have to have a referral from your oncologist. Please do not give up...go to a major hospital that specializes in cancer. I do not know where you live but there are great hospitals all over just read recommendations from others on this site. You can PM me or my personal email is frankannap@netzero.com if you have any questions. DO NOT give up ...stage 4 is NOT a death sentence. There is HOPE!!!!!!! we have a web site that you can go to and read our day to day journal of Frank's fight against the monster "cancer" www.caringbridge.org/visit/frankproctor
you can read the journal or guestbook and even leave messages.
Hugs,
Anna

eric38

amcp said:

There is HOPE
Jennie..I am amcp that Buzzard wrote about. In 8/06 my husband had a colonoscopy and was told at that time he had cancer and it had been there a long time. We were later told he was stage 4 colorectal cancer with mets to the liver. In 9/06 he had a coloscopy done and was given a permanent bag. The oncologist that came to the hospital told my husband and I that if he did not have chemo he would live 6 months maybe...if he had chemo treatments he could possibily live 2 years. So chemo after chemo for over two years, mets growing on liver, CEA going higher and told all along this was pallative care. In 12/08 our oncologist said there was nothing more he could do for my husband ...nothing was working and there was now a nodule in his right lung. Our medical oncologist said he wanted us to go to Vanderbilt in Nashville to see if my husband qualified for a clinical trial. Our appt was on 12/29/08, our oldest son drove us the 3 plus hours to Nashville TN to meet with the Medical Oncologist Dr. Laura Williams Goff. After receiving all his records and copies of all his PET scans, CT scans, and radiology reports she said that he qualified for Phase 1 which is strickly experimental. Medication which has never been tested on humans...only on human cells etc in the lab. We drove home to wait for her to contact us for a clinical trial. Not excited but better than nothing. A week or so later, she called stating that after taking my husbands records before the board that meets on every patient, she felt that he was NOT a candidate for clinical trial but WAS a candidate for liver surgery. Sent to see a Liver Surgical Oncologist named Dr Alexander Parikh. He said YES my husband was a candidate for liver surgery resection but since he had a nodule in his right lung that had to be taken care of first. We were then sent to DR Eric Lambright a Thoraci Surgical Oncologist. He ordered more test and another CT scan. The nodule lite up which more than likely meant cancer. My husband was a smoker and had smoked for 45 years...my husband is 62. Dr Lambright said he could remove the cancer but that my husband had to quit smoking and after two weeks they could do surgery. My husband quit smoking that night cold turkey and has not smoked any since then. So on Feb 10 my husband went into Vanderbilt for a right lung resection..the plan was to take the upper lobe of the right lung and look through the lung to make sure there was no more nodule or anything that looked like cancer. My husband only had to have a 4% wedge taken out of his right lung with no other cancer found. After recovering for 6 weeks, we then went back to meet with Dr Parikh about the liver resection. Surgery was scheduled for April 29. They were very worried ..cancer had grown and multiplied..CEA was over 16,000. and my husband was not in great shape after two plus years of chemo and lung surgery. We (the family and him) were not sure that he would even make it through the surgery. After 7 hours plus of surgery, 7 units of blood, 4 units of plasma, removing the gallbladder, repairing his stoma, removing the cancer that had grown and attached to his diaphram, removing 75 % of the right lobe of the liver and several cancers on the left lobe of the liver, he made it through and was put in intensive care. Doctor came out and told us he now had a 1 in 3 chance of never having any more cancer EVER, 1 in 3 chance of if cancer returns it would be treatable and or operatable, and 1 in 3 chance of it taking his life. 2 out of three is not bad when you came with No Hope for over two plus years. He was in the hospital just 6 days and then released. It now has been 3 weeks since his liver resection...he is my miracle man. He has good days and bad but he is doing great. We are on cloud 9...from no hope to having no cancer is amazing. We believe definately in second opinions and in going where they specialize. Even though it is a 3 plus hour drive each way..we will continue to follow up there from now on. The care we received was unbeatable. Also the cancer society has what they call HOPE LODGE where you can stay free of charge when coming in for appt and treatment, you only have to have a referral from your oncologist. Please do not give up...go to a major hospital that specializes in cancer. I do not know where you live but there are great hospitals all over just read recommendations from others on this site. You can PM me or my personal email is frankannap@netzero.com if you have any questions. DO NOT give up ...stage 4 is NOT a death sentence. There is HOPE!!!!!!! we have a web site that you can go to and read our day to day journal of Frank's fight against the monster "cancer" www.caringbridge.org/visit/frankproctor
you can read the journal or guestbook and even leave messages.
Hugs,
Anna

Amcp - you posted on my
Amcp - you posted on my discussion board and I came here to see your husbands story. I was recently diagnosed stage 4 with 3 - 4 mets to liver. It just goes to show you that no matter what situation you are in somebody else has it worse and there are always those who have overcome. Your husbands story is very inspirational. He is a walking miracle. Most people in his situation would have given up and now look at him. He is still alive and kicking with a 1 in 3 chance of cure and a 2 in 3 chance of having manageable disease. That is a far cry from where you began. There was seemingly no hope. Now you with the help of God have created hope.

pmppals

There IS HOPE for YOU
Dear Jennie, I was diagnosed at Stage IV with Appendix Cancer...eleven years ago!

Technically, I am still at "Stage IV" and will likely never be disease free. However, there are many, many of us who are LIVING WITH cancer as a chronic illness, just as people are LIVING WITH diabetes, HIV and other diseases that used to have such poor prognoses.

Although we would all like to be CURED there IS HOPE for us and LIVING WITH a disease and LIVING WELL with it, are the next best things to a CURE!

We, the members of the PMP Pals' Network, invite you to visit our website at www.pmppals.org where you will see the smiling faces of other Appendix Cancer patients and were you can find many resources for the treatment of this diagnosis and helpful tips for recuperating from treatment (surgery and chemo!)

With best wishes for your good health,
The PMP Pals' Network at www.pmppals.org

krystle singer

PET scan nightmares
Jennie,
I am so sorry you had to go through this. No, I don't know how you feel, but I may as I am still waiting for a CT kidney scan in August. Truly, the confusion is rampant. The other folks on the list are right, tho. Stage 4 is not a death sentence. As for the second opinion, personally, I think it can't hurt...although time will pass and time is not a person with concer's friend when it comes to healing or treatment. My biopsy was sent to Mayo's and it was a miserable two weeks while I waited to find out the results. I was lucky, the growth was only PRE=cancerous.

I echo some of the others, breathe deeply and slow your heart rate. Above all, don't give up. Certainly I'll be praying for you...it does help. Without all my friends and a lot of people I'll never know, I wouldn't have made it this far.

You're in my heart!
Krystle singer

Sundanceh

Just Getting Back Home and Missed the Post
Hi, Jennie

Wow, I've been out getting our cars maintenanced and have been out all day, just getting and ready your post.

By now, everyone has chipped in and helped you and am so glad you feel a little bit better...I know you've been scared and we' talked a few times and I've been concerned and try to help you with what I know.

I'm considered a Stage IV as well. Colorectal cancer, met to the Liver and possible to the pleura of my lungs...we spoke of this the other day.

But I'm working full time and was working even during all of my chemo treatments and I've still got my chores to do and bills to pay, so life will go on, it's just an unsure time right now. But hey, this board flooded you with help and there is alot of experience out here...I wish I had known half of this when I first started.

Click on my Avatar and you can see how my life and surgical and chemo treatments were. Mine is a similar story to others now, except I've got a lung issue that I have not read too many people dealing with so I differ a little bit there...of course I'm concerned about it and am waiting on my 2nd opinion to see which way I go.

I just wanted to post and say I'm sorry you were hurting so bad today, so glad everyone reached out and helped you, and just wanted to tell you that.

If I can be of any continued help, you already know how to get hold of me.

Have as good an evening as you can....alot of us are Stage IV and still kicking....I just started my SIXTH year of this stuff, so really I do understand and I think as things go by, you will be better equipped to handle this situation...and the great news is that we're still all here.

-Craig

jillpls

scouty said:

Hi Jennie, take a deep breath honey
5 years ago tomorrow I gave myself a b-b-q asking family and friends to come give me strength and inspiration as I fought stage IV rectal cancer with 3 mets to my liver and 1 to my left lung. Surgery was not an option, so I did chemo (folfox with avastin). At the time deep down inside I think the party was more of a way for me to say goodbye while I still looked and felt good. Like you, the news of stage IV hit me really hard and took days even weeks to really sink in. I was told chemo would extend my life 2-3 years and I heard that but I don't think I ever really believed it. My oncologist mentioned that he had had his fair share of miracle patients and I decided right then and there I was going to be one of those!

So here I am 5 years later, NED for over 4 1/2 of those after never having surgery on my liver or lung!!! Non-surgical remission it is called.

There is a really cool procedure the bigger cancer centers can do called RFA (Radio Frequency Ablation) that laser zaps single mets without the major surgery a liver resection involves.

The liver is an amazing organ, if you do have to have a resection, it regrows!!!

Get to a major cancer center for a second opinion to find out which of your 3 options is the smartest one for you: Chemo, RFA, or a liver resection.

I will enjoy my memories tomorrow of having 160 wonderful people in my yard listening to a live band and eating good ole North Carolina b-b-q. And you imagine where you will be in 5 years!!!

Lisa P.

PS Like Kimby I got a second opinion 60 miles away at a comprehensive cancer center and KNOW I would be dead or dying today had I not.

I love to hear stories like yours
I'm in NED right now and have been for 6 months. I'm on Xeloda and Avastin as a maintanence. Are you on any maintanence regimine now??

donnare

Deep breaths for sure
Hi Jennie,

I am so sorry you and your family are going through this. My husband was dx Stage IV colon cancer with over 11 mets to liver about a month ago. It was devastating and I found it very difficult to sleep, eat, work, stop crying - do anything but be terrified. I came here and found compassion and much needed hope. I'm still scared and it certainly sucks, but I have so much more hope than I did just one month ago, and I am determined to not have my family be defined by this dx, to not let it steal any more of our joy, and to definitely not live in fear.

As you've already seen from all the posts, there are wonderful people here who are LIVING with Stage IV cancer. It is not a death sentence. Ask for a prescription to help with the anxiety - Ativan helped my husband and Xanax has helped me. Get as many opinions as you need to feel comfortable that you are getting the best treatment possible. And try to stay in the present moment and not get ahead of yourself too much - take it one day at a time - meditation may help. Check out books/CDs by Jon Kabat-Zinn on meditation and mindfulness - my husband is reading "Full Catastrophe Living" and used some of the techniques to help himself relax after his initial dx.

You and your family are in our prayers.
Wishing you peace Jennie.

Donna