Doctors Disagreeing
Today my husband went back to his local oncologist for round 2 of induction chemo and had an upsetting conversation with the oncologist. He made it very clear that he still believes the lungs show disease despite the biopsy done at MD Anderson saying "NO MALIGNANT CELLS IDENTIFIED". He wants to order another biopsy. WTF...
I called the primary doctor at MD Anderson to get her take on this and I'm still waiting for a call back. They were very confident in their finding last week, so now I'm really scratching my head.
The original CT scan was done 5/22 and it showed a single 4mm nodule in the right lung. On 6/2, he had a rigid bronchoscopy of the trachea to clear out the tumor we know is SCC. On 6/3 he had an FNA of the thyroid and one node near the jugular. On 6/12 he had a PET scan. It lit up the areas in the neck obviously because they had been messed around with and then it lit up 3-4 small (1.5cm) areas in the right lung (max SUV value of 4.5).
On 6/26, he had a CT with contrast at MD Anderson that showed the same 3-4 small areas of concern in the right lung. They biopsied the biggest one on 6/27 and reported back "NO MALIGNANT CELLS IDENTIFIED" and "Rare fragments of fibroconnective tissue and mixed inflammation". They also ordered a new PET and scheduled it for 7/24. They said the treatment course will now focus on the trachea with radiation and some milder chemo.
Anybody have any idea what the heck is going on here? With MD Anderson and the local Oncologist disagreeing about the lungs, we are unsure of anything. I thought a biopsy would end the debate. It didn't.
I also don't understand the need for ANOTHER PET scan? He's been biopsied and operated on 4x now. A PET scan is going to show all kinds of inflammation in the neck and now the right lung. What's the point? To generate revenue?!
Comments
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wow, that is very upsetting
wow, that is very upsetting to say the least. this is hard enuf but when you have different docs telling you different opinions, that is rough and nerve racking. just want to say i'm keeping you both in my prayers and i hope the doc clears some stuff up when she calls back. will be praying for clear and definite information.
God bless you,
dj
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sorry about the confusion..
It is always harder when there are differing opinions. In your case, the fortunate thing, is the difference is overly detecting something rather than missing and under detecting something. At least with more focus on the areas of concern, more poking and testing will lead to the final answer. Meanwhile it is certainly far more disconcerting and inconvenient but they are working toward the same end.
I think all you can do is use your energy to keep all parties fully informed of all facets of your case to ensure everyone is working off the same set of facts and ideas. All you can do in the end is make the best decision based on what you understand and what you are being advised. Maybe a conference call can be arranged between the various specialists. Bringing in another opinion does not seem like a good ideas it can muddly things up further just as much as it might make things clearer. Goode luck!
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what you have paid for
is opinions. You have MD Anderson's, and you have your local oncologist's now. Neither is bound by the other, as they are independent sources of expertise. And this is not an exact science. Sometimes people are tempted to get yet a third opinion, but this can then lead to three differing avenues to go down which is not reassuring either. You wont likely resolve the disagreement by suggesting your local guy talk to MDAnderson, IMO.
I don't remember if your bx was an open proceedure or an FNA. The first is very definitive, the second is not definitive unless it shows cancer. If it does't show cancer there is a chance is simply missed cancer cells. That is the disadvantage of an FNA.
Sometimes getting even experts to agree is like herding kittens. You may be better off just picking a course of action and sticking with it. If that means going to MDA for treatment and that's within your abilities, then you can do so.
Personally, I think following up by another PET is pretty acceptable. If these masses in the lung are malignant, they are eventually going to grow. If not, they aren't.
best
pat
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same thing for us
thats what happened to us too..but the next place this type of cancer spreads is to the lungs and then its hard to get rid of...so thats why they are so worried about the lungs..and a needle biopsy isn't a 100 accurate...not trying to scare you but its the truth...so thats why i am sure they are doing the extra scan...they are going to do 5 rads to the tiny spot thats showing up in my hunnys scans even though they dont think its cancer..they feel like it will turn into it if they dont do something now..so i am all about doing something now!
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Same Problem
Same here, In 2006 I was told by my local Oncologist Doctor that a MRI I took was showing a new tumor this time in the back of my head. My ENT said that from what he is seeing my NPC was back and I needed to get on Chemo again this was in.
My Wife said no we need a second opinion so we went to MD Anderson in Houston, they did and MRI and PET. The Doctor there said you have a lot of problems from all the radiation you took but you don’t have Cancer.
I went back to my local doctors here in Lafayette and they all disagreed with what MD Anderson said. OK so we then went to the Mayo Clinic in Phoenix who did a biopsy and it can back showing No Cancer.
My local doctors still did not believe the Mayo report and said they are wrong and MDA is wrong. I had to fired all my Local doctors and got new one as I could no longer trust what they was doing or saying. I am still alive today 2014, 8 years and never did anymore treatment for Cancer.
My call is to go with what MD Anderson is telling you.
God Bless
Tim Hondo
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Start treatment
This entire process is a wild roller coaster ride. You paid your money and it's time to get on the ride. MD Anderson has earned a stellar reputation for performance and innovation. As Pat stated, if it's within your ability start there. If not I would try and implement their plan locally with the caveat that it is re-evaluted as you gain more knowledge on the lung nodules. You might start that conversation with your local oncologist or you might find the need to find someone local who is willing to work with MD Anderson's diagnosis. Perhaps they can recommend someone. Don't get stagnated by all the confusion. Get started and the rest will work itself out. There really aren't any ulterior motives going on. Leave anger out of the equation. Either course of action will get you to the same destination. Start today and adapt tomorrow if necessary. You can do this, Trust your instinct on this one, because from where I sit you are doing every thing possible to direct a proper course of action.
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Roller Coaster of Medical Proceduresratface said:Start treatment
This entire process is a wild roller coaster ride. You paid your money and it's time to get on the ride. MD Anderson has earned a stellar reputation for performance and innovation. As Pat stated, if it's within your ability start there. If not I would try and implement their plan locally with the caveat that it is re-evaluted as you gain more knowledge on the lung nodules. You might start that conversation with your local oncologist or you might find the need to find someone local who is willing to work with MD Anderson's diagnosis. Perhaps they can recommend someone. Don't get stagnated by all the confusion. Get started and the rest will work itself out. There really aren't any ulterior motives going on. Leave anger out of the equation. Either course of action will get you to the same destination. Start today and adapt tomorrow if necessary. You can do this, Trust your instinct on this one, because from where I sit you are doing every thing possible to direct a proper course of action.
Thank you again to all with the advice. I am also leaning toward MDA's plan. It's not like they're just going to forget the lungs now and move on. They're going to treat the throat and watch the lungs.
New detail: The local oncologist referred us to an infectious disease doctor for Monday morning. This says to me that he has doubt about what it going on with the lung nodules althought he was verbally dead set that the lungs were diseased. I get that he errs on the side of caution. That's great. But we want the best treatment for the exact situation we are in and MD Anderson seems to be on that page with us. We do have the ability to get his treatment done there, so that's not an issue.
After speaking at length with my husband last night, he is comfortable with having a biopsy of the mediasternal lymph nodes as a backup to the original biopsy if the local oncologist orders it. By the time we see the infectious disease guy and get this biopsy done or not done, induction chemo round 2 will be over and it will be time to scan the nodules/nodes in the lungs again and make a definitive decision.
His rads will be at MDA either way, it has just become a question of when.
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excellant advice
Hello there !
All the advice above is excellant. Keep asking questions, write down everything so you can refer to it when confusing things pop up. Remember we are our best advocates, and need to understand the why's and how comes. I think the most important thing right now is to follow through with tx's that will get rid of this bugger. My thoughts are with you both, and remember we are here for you always. Hugs sent ! Katie
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Confusionkatenorwood said:excellant advice
Hello there !
All the advice above is excellant. Keep asking questions, write down everything so you can refer to it when confusing things pop up. Remember we are our best advocates, and need to understand the why's and how comes. I think the most important thing right now is to follow through with tx's that will get rid of this bugger. My thoughts are with you both, and remember we are here for you always. Hugs sent ! Katie
I just had a PET and the radiologist notes said NED but then went on to say there was a suspect spot behind my clavical. The ONC ordered a CT w/contrast which read pretty much the same. He then ordered a biopsy. Before that was actually done, the ONC met w/ the radiologist, my primary got the opinion of yet another radiologist and my radiologist at the Mayo Clinic viewed the scans. In the end, they all concurred it was a trailer of some sort, less than 1cm, and of no concern, in fact, I was told that the official report had been changed. Mayo wants another PET in 2 months.
MDA is very highly rated. Since you have differing opinions, maybe ask them what would make your local ONC feel differently than they do?
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MDA Called Back
The primary at MDA called me back just now. She is of the opinion that the suspect lung nodules are infectious and appear to be a pneumonia, however, the treatment at MDA is going to treat the lungs as if they are diseased, so this has been a needless source of anxiety. She said if the local oncologist wants to biopsy more areas to "throw more tissue in the bucket" it will not change the plan because none of their scans or biopsies will 100% prove what they are. So... there's that.
She didn't think visiting the infectious disease doctor on Monday was a bad idea. The more relevant data the better.
She also said the new PET was ordered because their machines are superior to the one the original PET was done on and they want the best picture possible to start radiation in the neck and in the lungs (if need be). Makes sense to me. Why work from a Polaroid when you can work from a Canon?
On a final note, she said the areas of concern shrunk between the PET scan 6/12 and the CT 6/26. The nodes in the mediastinum resolved as far as the CT is concerned and the tracheal lumen went from .7cm to 1.4cm. She indicated this to be significant for one round of induction chemo.
So 3 more days of 5FU and then a trip to Houston on the 24th is where we stand now. Amazing what one phone call can bring.
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jcortney said:
Stumped
I guess what has me confused is what difference in treatment does the local MedOnc suggest over the protocol he is using or that of MDA? From everything I've learned, there's not much difference if it's positive for the lungs or not.
Joe
Hi Joe,
The local oncologist wants to do 4-6 rounds of induction chemo before any radiation is administed. He says "traditional" radiation as opposed to the fancy stuff. My assessment of his personality: He is an older gentleman who believes himself to know the best way because he's been doing it that way for 40 years. I suspect he has cured a lot of pneumonia with chemo therapy over the years (har har har).
MD Anderson wants to start targeted radiation in the throat area after the 2nd round of induction chemo is completed. If they feel the lungs need it, they want to radiate the nodules in there concurrently with some type of radiation that even more focused than what they use in the throat area. That can only be done if the nodules truly are isolated and there isn't widespead disease growing that hasn't been detected yet. I guess the thought is that if the nodules are not cancer, it will become apparent at that time.
So the local is a more concervative 'wait and see' while MDA is a more aggressive 'let's fix this sh!t'.
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OkLumpinmyThroat said:MDA Called Back
The primary at MDA called me back just now. She is of the opinion that the suspect lung nodules are infectious and appear to be a pneumonia, however, the treatment at MDA is going to treat the lungs as if they are diseased, so this has been a needless source of anxiety. She said if the local oncologist wants to biopsy more areas to "throw more tissue in the bucket" it will not change the plan because none of their scans or biopsies will 100% prove what they are. So... there's that.
She didn't think visiting the infectious disease doctor on Monday was a bad idea. The more relevant data the better.
She also said the new PET was ordered because their machines are superior to the one the original PET was done on and they want the best picture possible to start radiation in the neck and in the lungs (if need be). Makes sense to me. Why work from a Polaroid when you can work from a Canon?
On a final note, she said the areas of concern shrunk between the PET scan 6/12 and the CT 6/26. The nodes in the mediastinum resolved as far as the CT is concerned and the tracheal lumen went from .7cm to 1.4cm. She indicated this to be significant for one round of induction chemo.
So 3 more days of 5FU and then a trip to Houston on the 24th is where we stand now. Amazing what one phone call can bring.
Unless I'm missing something, the protocols are just about the same (I had the MDA protocol for my SqBOT). The only difference I can deduce is that MDA might want to radiate the lung which at worst, is only suspect, especially since some of the nodules have shrunk. Over my treatment, nodules have come and gone with and increase or decrease in aspiration. I had one get as large as 4.2 cm that was gone three months later in a CT. The doc's are still arguing over the few that are left are they, or are they not malignant. Here's the deal from my perspective, fine needle biopsies are really difficult to get a good sample and, add to that you have to really biopsy every nodule or what was the point (unless you found a positive in the first one of concern).
So, it seems that your choice is if you want to have extra radiation as an insurance policy. That's a personal decision that without any positive indication of metastatic disease is one you must make for your peace of mind, but be aware, radiation is not without it's consequences.
Best of luck,
Joe
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jcortney said:
Ok
Unless I'm missing something, the protocols are just about the same (I had the MDA protocol for my SqBOT). The only difference I can deduce is that MDA might want to radiate the lung which at worst, is only suspect, especially since some of the nodules have shrunk. Over my treatment, nodules have come and gone with and increase or decrease in aspiration. I had one get as large as 4.2 cm that was gone three months later in a CT. The doc's are still arguing over the few that are left are they, or are they not malignant. Here's the deal from my perspective, fine needle biopsies are really difficult to get a good sample and, add to that you have to really biopsy every nodule or what was the point (unless you found a positive in the first one of concern).
So, it seems that your choice is if you want to have extra radiation as an insurance policy. That's a personal decision that without any positive indication of metastatic disease is one you must make for your peace of mind, but be aware, radiation is not without it's consequences.
Best of luck,
Joe
That makes a lot of good sense to me, Joe. Having a 4.2cm nodule appear and disappear must have been mindblowing... I wish they could develop a way to test the lungs definitively.................................. I'm sure you do too!
MD Anderson is going to win out here. After that conversation I had with them today, I feel like all of our concerns that were created in one 5-minute conversation with the local oncologist were extinguished completely. Cancer of the lung or not, they're treating it like it is. That seems to suggest the two oncologists are violently agreeing.
After PET#2 at the end of the month, we will have a better idea of where things are with the lungs.
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Update
Today the local oncologist was singing a different song. He had the infectious disease pathologist that he works with looked at the biopsy slides of the lung tissue and the new CT and she thought it looked like inflammatory tissue also. He said considering the fact that they did not appear until after the rigid bronchoscopy and because of the biopsy results, he thinks it might be a lung infection/inflammation that was a result of the bronchoscopy procedure. Crazy how they keep changing things. It won't change the treatment plan however on his end or at MDA, so... yeah.
The PET scan scheduled for 7/24 was denied by the insurance company because he had one on 6/12. The proton therapy ordered by MDA was also denied and is in appeals. I certainly hope these insurance people do not become an issue........................................ We will be standing in a courtroom if that's the case.
Happy Friday, all!
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