Josh from Kansas - Dx Sep 2012

[Jorge]

Hi Josh,
Here is our experience for your reference:
George had lung SBRT (I call it Gama Knife in my earlier updates) in Jan 2013, on 5 biggest mets in the left lung. One or two other mets in the left lung were also treated by Cyoablation in end of 2011. The pahtology report of the second laser surgery in Sept 2013 revealed there is a mean of 15% necrosis on all the 18 mets resected. From this report, you can see that the lung SBRT didn't damage the targeted mets in a good degree.
The reason is because the mets move while breathing during the SBRT procure, but the radiation area is fixed and there is no tracking system on the mets as Cyber Knife. So the radiation will not expose to the mets accurately.
Anyway, you can discuss with the radiologist.

[Ivan]

Wanted to chime in regarding Dr. Littrup's statement that ablation could accelerate growth of adjacent nodules. I was going through my old CT scans today, and check out this interesting history of one metastasis.

Code: Select all

2008_02 - nothing
2009_03 - nothing
---2009_04 - laser resection of two adjacent nodules
2009_06 - 6mm nodule appears out of nowhere right next to the scars
2009_19 - 6mm stable
2013_03 - 6mm stable for 4 years
2013_12 - 7.5mm slight apparent growth

What's notable is that this particular area exhibits EXTENSIVE scarring as compared to other similar treated areas.

Here's how I see it. Micro met was potentially stable for 5 years. Then grows from 0 to 6mm at the EXACT time when rapid healing is taking place in the adjacent area, and then it's stable for 4 more years.

Coincidence? Maybe. Food for thought? Definitely.

[D.ap]

Hello Ivan

Your response to Dr Litthrop's theory ? And your experience is worth discussing
Whether the concern be seeding or rebound or surgically caused tumor 'awakening' if you will, of undetected mets the patient can make a descion to perform the removal of tumors with more info or possibilities
It seems that I've read about people realizing a time that they impacted an area and then years later the ASPS tumor appeared??
Anyway the disease as I understand it is systemic and circulates in the blood system , so it is a crap shot to where it will pop up and possibly trama makes the likely hood of tumors showing in the bruised and blood pooled area?
Anyway thanks for sharing your experience with us all

Love
Debbie

[D.ap]

8 in August to 15 in October is fast. Is it close to the chest wall?

The Aug CT was done without contrast in Coswig, so I'm not sure if that affects how big the tumor appears. These are also my own measurements, so they could be incorrect. One of the two that I think he is talking about look to be close to the chest wall to me. The larger appears to be in the middle of the lobe...again all conjecture by my medically untrained eyes

We did hear back from Barb, Dr. Littrup's nurse, and Dr Littrup reviewed my scans, but replied that he didn't see the benefit of removing two nodules if the rest are also growing. He also made a comment about some on the right having grown, but the CTs I sent him were June/Aug/Oct, and the June/Aug were both prior to the laser surgery so I am confused about what he is comparing the right side to?
Anyway, I have asked for clarification from him via Barb, along with explaining a few of our ideas for how cryo would fit in to the plan, and hope to hear back from him this week. Also awaiting Dr Federman's review of the Oct scan.

I also asked about insurance coverage for cryo and Barb said sometimes it is paid by insurance. Any advice on making sure the insurance company understand the importance of the procedure and thus agree to helping to finance it would be appreciated. Feel free to PM if you prefer to discuss finances in private. From what I understand, a cryo ablation usually runs in the $10-14,000 range, which is 1/2 to 3/4 the cost of a complete surgery and hospital stay in Coswig!!

Just a side note for anyone who may have consulted with Dr. Schwarz at MSKCC in NY, apparently he is leaving for another job. He did not specify what the job was.

I will update as we work through this next phase of our treatment plan; I hope to know more soon.

Take care everyone.

Update:

The suspected growth turned out to be pneumonia.
Who would of thought we'd be happy announcing that today, over two years ago. Being pleased that pneumonia, not a tumor, was the reason image was increasing in size !

3 doctors looked at the scans plus 3 radiologists. They all felt strongly that it was cancer growth. They had us believing it as well.
They were NOT being malicious in making this diagnoses. They were using their educated skills to their best abilities. Only when we went to the ER were we given a better look see at the alleged tumor. After bloodwork and IV antibotics and waiting 3 weeks the image shrank. Thank God!

The message I would like to leave with you all and the lesson we've learned ,is the scans are only a tool to an educated guess in diagnosing this cancer. Please take the diagnoses as lightly as you can when making descions on treatments, based on scans. We were close to making a mistake of treatment with SBRT..
All our love
Debbie and family

[Olga]

Just to add to scans issue - both Dr.Littrup and Dr.Rolle correctly identified this image as a pneumonia, not a tumor. Some Drs have more on hands experience with the sarcoma lung mets than others, so seek a second and even third opinion before making an important decision about the treatments.

[D.ap]

Thank you Olga for adding that last post
Had we known it was pneumonia back in August we MIGHT of found it in blood work .
This particular pneumonia had very little symptoms as some pneumonias do so no one followed with blood work.
I don't know ,and maybe Josh can clarify ,but even listening to his lungs probably wouldn't of given them a clue to the pneumonia . That was right at 6 months post surgery

Debbie

[Bonni Hess]

Dear Debbie,
Thank you for sharing this wonderful news . I am so happy and relieved for Josh and your family. I Hope that Josh is continuing to feel better and that soon his pneumonia will be completely resolved.
Thank you too Debbie and Olga for the excellent cautionary advice regarding the critical importance of seeking additional scans and opinions before making any treatment decisions. As many of us have learned in fighting this extremely rare and poorly understood disease, doctors can and do make mistakes, they don't always know everything, and scan results can be unreliable and even erroneous. This was clearly demonstrated to us when Brittany's post-op specialized brain PET scan showed possible tumor reoccurrence in the resected tumor bed and her highly respected and experienced radiation oncologist strongly recommended Whole Brain Radiation (WBR). Based on our anecdotal and researched knowledge that WBR had not proven successful in treating ASPS brain mets and the serious risks involved with it of very debilitating permanent short term memory loss and increased and continued growth of the brain mets, we declined subjecting Brittany to WBR. Following our research for alternative treatments, we instead pursued a minimally invasive interstitial laser thermal therapy (ILT) surgery in Boston which thankfully revealed that there was no tumor reoccurrence in the resected tumor bed, but only scar tissue and residual inflammation which eventually resolved and disappeared. It is essential to be very pro-active and as well informed and knowledgeable as possible, and to not be afraid/reluctant to question or refuse a doctor's treatment recommendations. Because the doctors are so busy with patient appointments and treatments they don't usually have the time to do as much research, information gathering, and networking as the patient and/or the patient's family members so the responsibility to do this lies with the patient/the patient's family members.
With special caring thoughts, healing wishes for Josh, and continued Hope,
Bonni

[D.ap]

Just a few corrections
Sept 2012 --primary removed, biopsy right lung? 3 removed needle wise ? Was a VATS, not a needle
Jan 2013 --left lung laser treated over 70 mets treated
Aug 2013--right lung over 70 treated
June ct with contrast showed 6mm tumor on left lung
August CT was done with no contrast prior to second surgery showed this nodule at maybe 8mm
October CT w contrast showed same tumor at 15mm
January Ct showed a tumor at 9mm but fading cloud of pneumonia--sorry don't have report but in my professional opinion
The primary was a little over 6cm by 2cm? 6.8x5.5x3.6 cm via pathology report

Hello all,

We are coming up on chest CT ! We need to schedule.
We need to follow up after a growth of a tumor in the left lung as a result of pneumonia which is pretty much gone. December . Christmas.

We will be looking at lungs after laser surgery on both as well as follow up on the pneumonia area. I will check but I think with contrast? What do you think?


Will let you know as soon as we find the results.
All our scans are at a central area at this time and within a wing with our new sarcoma oncologist that really is an angel in disguise.

I will let you know of the CT resolution as soon as I get that info.

Love
Debbie

[Bonni Hess]

Dear Debbie,
Thank you for the thoughtful update. I will be thinking about Josh and your family and sending most positive thoughts and best wishes for very good results from his upcoming scans. You indicated that he is having a chest CT, but I would strongly advise/encourage you to request that the pelvic/ abdominal area also be included with his chest CT to ensure that there are no mets in those areas, and to request the the scan be done with contrast for the most definitive reading. Take care and keep in touch as you are able.
With special caring thoughts, healing wishes for Josh, and continued Hope,
Bonni

[D.ap]

Thank you Bonni

Great suggestion!

Debbie

[Josh]

8 in August to 15 in October is fast. Is it close to the chest wall?

The Aug CT was done without contrast in Coswig, so I'm not sure if that affects how big the tumor appears. These are also my own measurements, so they could be incorrect. One of the two that I think he is talking about look to be close to the chest wall to me. The larger appears to be in the middle of the lobe...again all conjecture by my medically untrained eyes
[...]
I will update as we work through this next phase of our treatment plan; I hope to know more soon.

Take care everyone.

Update:

The suspected growth turned out to be pneumonia.
Who would of thought we'd be happy announcing that today, over two years ago. Being pleased that pneumonia, not a tumor, was the reason image was increasing in size !

3 doctors looked at the scans plus 3 radiologists. They all felt strongly that it was cancer growth. They had us believing it as well.
They were NOT being malicious in making this diagnoses. They were using their educated skills to their best abilities. Only when we went to the ER were we given a better look see at the alleged tumor. After bloodwork and IV antibotics and waiting 3 weeks the image shrank. Thank God!

The message I would like to leave with you all and the lesson we've learned ,is the scans are only a tool to an educated guess in diagnosing this cancer. Please take the diagnoses as lightly as you can when making descions on treatments, based on scans. We were close to making a mistake of treatment with SBRT..
All our love
Debbie and family

Wanted to respond to this and clarify a bit. Over the past year I identified a spot which I thought was possible rapid tumor growth, but it turned out to disappear on a later scan, possibly scar tissue or pneumonia. There is another confirmed active tumor that went from 0.8 -> 1.5 cm from June to November which qualified me for the Cedirinib trial, but we opted not to start that. I had another bout of pneumonia on Christmas which sent me to the hospital believing that I had pneumothorax from the August surgery. This pneumonia appeared to be a tumor to the doctors who viewed it, and I thought it was as well (I thought it was the one identified from the November scan that had grown even more). We were making plans to have SBRT done on it, and the SBRT doctor, although very kind, was prepared to irradiate healthy (but pneumonia stricken) tissue. We also sent a copy to Dr. Littrup to talk about cryoablating it, and he identified it as most likely pneumonia and we decided to hold off on treatment until another scan was done.

Lesson learned here is that doctors do not necessarily review old scans available to them and compare to the current one. I would wager that some doctors do not even look at the actual CT scan in much detail, instead relying on the radiologist report. Some of this is also due to jumping around to different doctors trying to find one we really like also, so one must be vigilant when switching doctors as well. Lastly, as Ivan said and does, it is important to keep an eye on your own scans and not rely on any radiologist or doctor to do that for you. They have lots of patients and not always enough time to review scans to the detail I'm sure they would like.

I still have quite a bit of pain and discomfort from the 2 lung surgeries, possibly from healing or small pneumonia bouts. I don't think I tolerated recovery as well as I could have had I not had to return to work so quickly following the surgeries.

Most recent scan has showed slight growth from November, growing 2-3mm over 6 months. So growth has apparently slowed. This is good news, and leads me to believe that the August surgery on the right lung may have spurred this growth in the left lung. Will update as I have time.

[Josh]

Hmm..it won't let me edit my post, but that should be 0.8->1.5 cm instead of 8->1.5

[Olga]

Josh, thank you for the very important observations and your comments re. scans. I think it is very important to ask the referring oncologist - the one that writes a requisition for a scan - to add a note asking to compare the scans with the longer period in between them in addition to the consecutive ones given the slow growing nature of the ASPS mets. And to be very proactive in investigating the situation when it does not look right. I corrected the type in the above post, we have the edit time setting of this board on some period and it already past that for you, only admin can do that past that.

[jcs2007]

Thanks for the info regarding radiation treatment. We opted to do SBRT too with some reservation but wanted to try it since it is noninvasive. Sam tolerated the treatment well and we will do another Ct in July to evaluate. Thanks for the reminder to research and get possibly get a second opinion. Be well to all! Cindy

[Jorge]

Hi Josh,

Any updates recently? If I remember correctly, one of the pulmanory lobes were not operated in your last laser surgery. How many mets on that lobe? Do you plan to have another laser surgery to remove them?

Lynette