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False Positive PET scan

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

I have posted about my husband who was diagnosed with Stage 4 EC that tested positive for HER2 (the most aggressive breast cancer gene)back in April 2012, went through chemo and radiation from the end of April to June then had surgery in August to completely remove his esophagus and pull his stomach up to make the new esophagus. Surgery took 9 hours and extremely invasive but we got through it. In December of 2012 after having his routine CT scan a lymph node in the left side of his neck eas detected. You could feel the lymph node was swollen to the touch and he was scheduled for a needle biopsy after Christmas. I asked why not biopsy it now and was told it was "probably" swollen from surgery. I questioned that decision again and wanted the biopsy done that day but the Oncologist said it was not necessary. NOT NECESSARY?? I argued but was over-ruled. I remember as we left I looked into the eyes of the Oncologist and said you are making a mistake. Doing the needle biopsy failed for the lymph node shrank and it was too close to the carotid artery and the surgeron did not want to risk puncturing it. So after an extremely painful biopsy failure, we were sent home and we were sent for a PET scan and sure enough that lymph node lit up as well as few other lymph nodes in the neck. Our oncologist said they only registered a 2 which meant they could not confirm it was cancer and they would rescan him again in 3 months. I once again told the oncologist he made a mistake and told him the cancer was back but what do I know..I don't have MD after my name.  

So we went on with life and for a period of time Mike was doing good. He was getting ready to go back to work on a part time basis as well as doing out patient rehab. He told me "see honey, you were wrong, I feel great" and I said "perhaps" but deep down inside, I had this nagging feeling I was not wrong.. His cardiologist in the beginning of April 2013 took him off his heart pill that he was on for early in his recovery as he had a few episodes of rapid heart beat that took him to the hospital. The medication was stopped cold turkey which in all my dealing with dotors, they normally don't stop heart and blood medications like that. Within 48 hours, my husband went from days away from getting back to "normal" to extreme breathing issues, extreme weakness that could not get him off the couch to loss of his desire to eat. I told anyone that would listen what I have been saying since December, the cancer was back so we went for another CT and PET scan and it came back showing lymph nodes on BOTH sides of his neck, in the lining of his lungs and around his heart. Mike continued to go downhill and I called his surgeron who does his throat dilations and said the scans are missing something and you will see it with the naked eye. He told me that Mike probably just deconditioned but we were scheduled the second week in April for another dilation so he would look then. After the procedure was done, the surgeon cme out to talk with me. HE NEVER DOES THIS and he said that be took a biopsy as his esophagus and stomach looked inflammed. Deconditioned I said..not..the cancer is back isn't it. Surgeon said lets see what the biopsy says.

Long story short, the surgeon called me two days later and said the cancer was back and it was in the esophagus at the connection point. I replay those words over and over in my mind and saying to the surgeon, "I can understand how the CT many have missed the cancer in the esophagus but how did the PET scan miss that? Aren't they suppose to be accurate?" and there was total silence on the other end of the phone. Then I remember saying "and no one would listen to me that the scans were missing something and YOUR naked eye saw a problem!"

For 2 months now I have questioned over and over and over how in the world can the scan results ever be trusted again? I know that this does not happen to everyone but it happened to us but they lied to us and now I wonder just how much cancer is undetected or just how advanced it is. They say he is now ADVANCED stage 4 cancer because it returned, it is the same identical cancer as before and returned at the same location as the first time around. He is no a candidate for surgery or radiation so all we have left is aggressive chemo called Folfox. We had our first treatment May 21st and it took him 9 days to become functional again. We could not do the next scheduled chemo 2 weeks later as he got food stuck in his throat and needed to have a dilation done so we go this Tuesday the 18th for round 2. 

I wonder how long the chemo will knock him down this time and I question..is the chemo really worth all the pain and the "quality" time it is robbing our kids of being with their dad. God I am so angry right now..but thank you all for letting me vent.

LauraandLarry's picture
LauraandLarry
Posts: 184
Joined: Sep 2012

I know your fury. I do not however know your pain of dealing with stage 4. I as well as you have this gut feeling that EC is lurking in my husbands throat or area around there. I feel I am being ignored as "fearful or hysterical" and that I need to be more positive. Larry has repeatedly pointed to his throat and said " it's right here". In the beginning they said it was the tumor pressing on a nerve making it feel like it was up there. Yes during chemo it improved. Then halfway through it returned. They said it was due to the radiation. Following surgery they have said now it is due to the surgery. Larry had many nodes light up pre surgery. They biopsied nine of 22. All were negative, so they assume the rest are as well. At surgery they took 11 more which were negative. I always wonder about the rest, as we know sometimes only one is positive. Larry has had many struggles with recovery and not trying to be negative, my gut tells me, and my heart says the beast is still there. My heart goes out to you and your family, you have been through so much and now this. What a decision to make. Quality of life? We know there are several stage IV people that have fought the fight and survived for years. So we never say never. Is the chemo also suppossed to relieve him of some of his difficulties? If yes then I personally ask Larry to go forward with the fight. Does your hospital have clinical trials? Maybe a chemo regime with less side effects? How does your husband feel? Such a personal decision. I wish you the best and am praying for you and your family. You know that we are all right here to allow you to vent, this is the right place to do so. Please keep us updated.

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

It sounds like you and Larry are certainly facing quite the road yourselves. I have followed your posts and thank you for keeping us all updated on him. As for Mike, I think personally the doctors are doing what they have been taught to do when cancer first shows its ugly head and each and every time it returns..they go to the Big 3 as I call them..radiation, chemo and surgery and those seem to be the only choices outside of doing nothing. Doctors won't say whether chemo will work or not, they just say it is the only option we have medically available. We were in a clinical trial because his tumor tested positive for HER2 and he was getting herceptin from the beginning of treatment and he continued getting herception seven weeks after his surgery in August 2012 and he was still doing herceptin when we found out the cancer was back. We were told that if we continued on the study by getting the herceptin should the cancer return, then the doctors did everything medically possible to prevent it from returning. So we stopped the trial and the herceptin for there was no sense continuing. 

Mike is torn about chemo for he wants to believe he will be one of the lucky ones and chemo will give him back his life but then there is the reality that this first chemo treatment took 9 days for him to even function on his own let alone see an hour or two of daylight. Doctors say they will adjust his next chemo treatment so Mike said that continuing on chemo will depend on how he reacts to it when we go on the 18th for the next infusion. I want to believe what Mike believes but right now I just can't thought I keep most of my feelings to myself as I do not want to add to the already surmounting weight on his shoulders. The last thing he needs is a wife who thinks chemo is a waste. I do not see much improvement in Mike..we tried to take our two dogs for a walk and we went down two driveways and back and I thought he was going to pass out. He could not breathe and he said that 7 minute walk took all his energy that he fell asleep within minutes of sitting down. He emptied the dishwaher today and it took him almost a half hour to do so as he had to sit a few times to rest. Right now quality of life is a 3.

So we take it one day at a time, my heart continues to break and I cry in private so I can do my best to remain positive for him and the kids. 

Please keep us all posted on Larry and take care of yourself. 

Ladylacy
Posts: 692
Joined: Apr 2012

So sorry to hear the news.  But we have had experience with a PET/CT scan saying my husband was NED after undergoing 35 radiation and 3 chemo treatments for laryngeal cancer.  Then less than 2 months later he is having difficulty breathing.  I made an appointment with the radiologist and she immediately sent us to an ENT.  He scoped him in the office and said he needed a trach and one side of his vocal cords was paralzed and he needed another biopsy immediately.  This was after the first ENT (his partner) talked about a biopsy but never followed up.  We believed him and our oncologist that everything was good.  Well they said after the biopsy the cancer was back and referred us to a H&N specialist at a cancer center.  This doctor told us that the cancer was never gone it was there and hidden due to radiation swelling.  He did a complete larynectomy, throat reconstruction and partial neck dissection and said everything was good.

Fast forward one year and when my husband was having a procedure done they found a tumor at the cervical of his esophagus.  He told us he needed another round of radiation and chemo because surgery was out.  Okay we did that.  Follow up PET/CT scan and endoscopy 3-4 months later and we were told everything was good.  See you in three months.  Okay 3 months later another PET/CT scan showed the tumor was back and much larger and that there was a spread to his lung.  This was after being scoped by the radiologist one month earlier and told everything was good.  Reading the PET/CT scans myself, it showed the nodules in his lung were there before and showed up but no one was saying anything, also questioned some light up in the area where the tumor was found at the cervical of his esophagus.  We were told probably just inflammation from the radiation.  Our H&N specialist also told us that unless the cells are large enough, they aren't going to show up on any test you do. 

So I understand your frustration and anger.  My husband elected quality or quantity and it has been 6 months and in actuality he is doing good compared to if he had undergone more chemo.  Funny thing is that I remember this oncologist (second one who treated him for the cancer at the cervical of his esophagus) saying that since he was having no symptons, he wouldn't do anything right now.  No symptons but biopsies showing cancer and no treatment.  Sounds very wrong doesn't it.  But since my husband elected nothing further, we didn't pursue further chemo.  The first oncologist who treated the laryngeal cancer said that since my husband has elected no more, he would honor that and didn't try to get him to change his mind.  This oncologist is one my husband has been seeing for 9 years due to a rare blood cancer and controlled with daily chemo pills.

Some doctors are in fields they should be in at all and don't listen to patients and/or their spouses because they think they know it all, and we know nothing.

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

Good for you to advocate for your husband and demand to see an ENT. I have had to advocate a few times for my husband because either he will not think something is important to mention or he forgets to say anything as chemo brain has taken its toll. His short term memory seems to get shorter as he will often repeat himself a few times a day but his long term memory is still in tact.

It does come down to asking the question of quality or quantity of life and since no one can give us any other answer for quality of life if he stops chemo except what seems to be the standard he could live a few months to a year maybe longer. I have another friend who was diagnosed with stage 4 lung cancer, never smoked a day in her life and when she asked if she stopped her treatment how long would be have and she got the same answer as we did..a few months to a year, maybe longer. Right now we are watching the man we love not only get weaker from the cancer itself but even weaker from the chemo that is suppose to help.

I applaude your husband for making such a difficult decision and you for honoring his decision and I am happy to hear his doctor also honored his request. Our doctors said they too would honor our request if Mike decided to stop treatment. It is a hard decision as there are so many what if's that come into play. Right now I will wait to see what Mike decides to do and will honor that decision.

Hang in there and I wish you and your husband all the best and know that my thoughts and prayers are with you both.   

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

callerid
Posts: 99
Joined: Dec 2012

Christine:
I can hear your frustration. Sometimes doctors need to understand that tests don't always tell the whole story. If a spouse/partner/family senses something, a doctor should not take it as questioning his medical expertise but as additional source of information. I am sorry he has to go through this after enduring surgery and its recovery process.

PET scans can not always detect the small changes. Also, several have commented that false positives are not uncommon. As far as what doctors tell you, it reminded me of my husbands last scan. The doctor said there had been change. It has metastsized to his pelvic bone. So when I got the actual report  I could hardly recognize with "avid uptake" here and FDG there, etc, etc.

Have you tried alternaive medicine?  I think Joel has stopped chemo and is trying this route. Also, read Life Over Cancer by Dr Block. They can do personalized nutrition plans over the phone.

Keep asking questions. Your husband is lucky to have such a caring partner.

 

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

It is frustrating when a doctor thinks I am over reacting to a change in Mike but they do not see what I see. I know the time that I don't say anything will be the day they say wow that was important for us to know so as I tell them I would rather tell them what I see and then they can determine if it is important or not. Now with the latest scan showing a false positive my faith is certainly being tested that is for sure.

We have not tried alternative medicine yet but I do plan to start looking into it for I am willing to explore other options that may give my husband some relief and not make him sick or sleep for days on end. I will certainly read Life Over Cancer and thank for the suggestion. I am open to any and all possible altrernatives.

 

eternalife
Posts: 36
Joined: Apr 2013

Hi Christine,

Your story sounds oh so familiar to me, my husband was diagnosed with stage iv EC, Dec. 2011, also tested positive for the HER 2+ gene. He took Herceptin for one cycle, helped the lymph nodes and rib, not the primary site... chemo is not the miracle for everyone.

I have experience in occupational disease claims and especially cancer. I have seen all sorts of cancer claims and the results are not positive for any of it. You're right the main line of defence is chemo , radiation and / or surgery. I know sites like this one provide an oppportunity to share and promote hope to everyone, but we have to get real at some time.

Right now, my reality is my husband has very little energy, he has lost a large amount of body mass and continues to lose weight , has little appetite and is in major depression, takes sleeping pills and has a " chemo brain" , most of the time, not interested in anything but himself, struggles with staying on task and on and on. He will take one more radiation shot tomorrow, then we wait for a scan some 2 months later, in the meantime cancer doesn't sleep. Just because he has received the radiation there is no guarantee, that the beast is not multiplying within his system. He has been on chemo , 2 kinds in the past year and a half, surgery is not on the table although the last time we met with the thoracic surgeon, he was gung ho to do it... of course.. use my husband as another guinea pig... right now, he wants none of that.. he says he doesn't want to be fileted like a fish.

I remain hopeful, I do not share what I know with him, for he doesn't and hasn't want to be updated on the scientific information for some 1. 5years now, why would he change now... LOL . I am the scientist and am curious and like to be in the know.

I pray that however everyone's story end, all of us will be at peace and accept some things we just can't change.

Que sera sera... what will be will be.

Wishing you and all those on this site, only the best.

 

Christine135's picture
Christine135
Posts: 71
Joined: May 2012

Your post brought tears to my eyes for we do share such similar stories. Chemo brain..I laugh every time I hear that for when I first heard it when we were talking with our Oncologist the first cancer round, I thought that was kinda rough to say to a cancer patient that on top of everything else, he would be a chemo brain..but now that we are past a year of fighting chemo brain truly is accurate. I have watched my husband who had the memory of an elephant go to having the memory of an elderly person who forgets what I say to him, sometimes within the half hour to repeating things over and over and really not realizing that we already talked about the subject. Like it is not hard enough watching this horrible disease take away his body but also his mind crushes me every single day. So sad to say but my husband looks nothing like the man I used to know.

My husband takes Magace to stimulate his appetite and for the most part it works so maybe that might be something you could ask your doctors about for your husband so at least it will send to the brain a spark to eat. Without the Magace, I think Mike would truly stop eating. Its a liquid and is once a day so I thought I would throw that out to you.

We have another chemo treatment on the 18th and Mike said he would decide if he will continue or not depending on how he feels. Last chemo it took 9 days before he could function beyond getting off the couch to go to the bathroom and then in 4 days we would have been back for the second round as we go every two weeks but he got food stuck in his throat so we had to cancel chemo in order to do an endoscopy to remove the chicken and stretch his throat. Mike already does not deal well with the day after an endoscsopy as it takes over 24 hours for the drugs to make him feel semi-normal so adding chemo on to that would have been a disaster.

I will say since we have not done the 2nd chemo treatment as scheduled on the 4th, Mike has a little more energy even though it still comes in spirts so watching him now, he quality of life is a 5 whereas when he did the chemo he said it was a 0 then we went to a 2.. it is clear to me that the treatment is truly worse than the disease in just what I am witnessing these last few days but know come the 18th this will all be gone..again..

Please know that my prayers and thoughts are with you and your husband and please feel free to keep in touch. I usually check this site a few times a day.

Wishing you the very best and be sure to take care of yourself as well..that's important as I am finding out myself.

Christine 

eternalife
Posts: 36
Joined: Apr 2013

Hi Christine,

We certainly should stay connected as our stories are so similar. My husband finished his radiation today, but said he is having some difficulty swallowing now, I think that is to be expected from the radiation treatments over the last 5 weeks, ( 25 in total). My friend who I have known for some 30 + years told me to speak to my husband , having him recall the happy moments of our lives , so we can weave our own special moments.. we should not live with any regret because we really don't know where this is going. We have some understanding, but for now we are just plugged in as the primary caregivers. I plan to get out the albums, and have him feel his feelings. Although all of this can be so morbid, we must stay in the moment. That's the only way , we will survive this roller coaster ride.

Keep posting,

Hugs and prayers to both you and your husband.

Dad'sfight
Posts: 155
Joined: Feb 2013

Reading your guy's post brings tears to my eyes for sure. When my father started chemo they too prepared us for what they called "chemo brain." I remember thinking yeah right, Dad won't get that.  He did, and I still think he's having lasting affects from it still. It takes him much longer to comprehend something, he's very forgetful, and repeats a lot. He's not as sharp as he used to be.  I asked that doctors about it and they said give it time, about 6 months. Everything is always "6months." After reading your posts I don't know if I would want dad to do more chemo if it comes back. That's just how I feel at the moment, but that could change when the time arrives. I don't know.  The whole family is still struggling with this and I don't know if we will ever feel at peace. Eternalife and Christine thanks for sharing your stories, I wish you both the best!!!

Tina

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