New spinal METS, or there before?

teds12

New spinal METS, or there before?

teds12

Folks,

In 2009 my wife found she had an "aggressive lobular carcinoma" because a cancerous lymph node "popped out" in her armpit; it was extremely painful. The cancer was missed by ultrasound a month earlier, but was confirmed with an MRI. Long story short: she had a mastectomy, 6 full cycles of chemotherapy over 3 months with the "3 most effective agents" as of 2009, and 50 radiation treatments. In a one-on-one, her surgeon confided to me that her lymph nodes were pasty and totally overrun and that there were several smaller tumors around the primary cancer in her breast, but that he was confident that the chemotherapy regimen used would "take care of everything throughout her body". My wife was told it was a stage IIB cancer, but...

In January my wife had a bout of somewhat migratory "excruciating pain" around her left knee and needed a walker to get about. The Orthopedist that we saw prescribed an MRI of her lumbar spine. The pain resolved with Naproxen within a week. The results were discouraging showing mottling and diffuse darkening of the L1, L2, L3 and L4 bone marrow with a Radiologist's written results "strongly suggestive of a metastatic cancer with additional arthritic degenerative activity at L3"; he sent her back to her Oncologist. The concerned Oncologist ordered a whole body PET Scan. The PET scan showed a single, small "hot spot" on L3. The Oncologist then ordered a whole body Bone Scan for confirmation; it was totally negative. He then shared that he had a second Radiologist with a view that the MRI "might not be cancer at all". I then took my wife and the MRI (and views), PET Scan and Bone Scan results over to her Radiation Oncologist (RO) for a second opinion. When I asked the RO to read the MRI and interpret it for us, he said "I don't do that, I rely on the Radiologist's interpretation" (surprise, surprise)! However the RO did make solid contributions and ordered an F18 bone scan and MRI of her cervical and thoracic spine. The F18 bone scan finding did not confirm the PET Scan L3 hot spot, but did show "a couple of ‘very small' suspicious other areas over L1 to L3". The MRI of her cervical and thoracic spine were perfectly normal. The RO's view was that her leg pain was likely unrelated to METS and arthritic in nature. Finally, her Oncologist just ordered a repeat of the lumbar spine MRI after this 4 month interval.

While we were awaiting the Radiologist's reading of the repeat MRI, since I had the CDs I took the liberty of comparing the repeat with the original. They match perfectly in every way in every slice and view. So here are my thoughts: the mottling of L1-L4 looks terrible and might be if the metastatic activity is relatively recent, but since we do not have an L1-L4 MRI from 2009 when her breast cancer was first discovered, I'm wondering if the L1-L4 activity might have happened "in-situ" at the time her breast cancer developed. I'm thinking so because of the insidious, hard-to-find, nature of her original lobular cancer; thus METS might have been spawned well before her chemotherapy and that the "3 most effective agents" and her 3 years of Arimidex treatment might have done well, destroying the L1-L4 METS, but leaving the discolored bone marrow for the MRIs to identify, and that the left leg pain was simply referred pain from the arthritis at L3 impinging on the left sciatic nerve at the spinal exodus.   

Despite the fact that I'm a multiple degreed chemist with dozens of publications who's spent 4 decades doing high level R&D at a couple leading US corporations, I hesitate to discuss my theory with the Oncologists and Radiologists attending to my wife because "they do science differently" than I did in my career.

Any thoughts? Do we have good reason to be optimistic?

Gitane

Hello teds12,  

Discussing your "theory" with the onc and RO's may lead to more testing, and may or may not give you the answers you need.  I'd do it anyway if you want to know!!!  Would a bone marrow biopsy help?

In terms of possible treatment.....Is your wife being treated with Zometa (bisphosphonate for bone) in addition to her AI?  A low dose of Celebrex (a Cox 1 inhibitor NSAID) may help with cancer and helps with the joint/muscle pain caused by the AI.

teds12

Thanks for the response Gitane,

The repeat MRI was read by a radiologist who inputted a concern for the mottled appearance of the bone marrow in L1 to L5. He also stated that this repeat MRI is EXACTLY the same as the first one taken 3.5 months earlier and that the PET scan L3 "hotspot" was not confirmable. My wife's oncologist called to personally speak with the radiologist, but he was out; he spoke to another instead. After going over both lumbar MRI's, the clean thoracic and cervical MRI's, the PET scan and the F18 bone scan together over a period of 30 minutes, the oncologist and this radiologist concluded that she does not have spinal METS, rather only degenerative issues in her spine (whew)! So of 4 radiologists, only 1 diagnosed metastatic cancer. The oncologist will see my wife again in 4 months (another MRI and cold sweats, I'm sure)!

The oncologist prefers not to start Zometa (downside risk, side effects if no METS) or change from Arimidex (because it really might be working very well).

Regarding Celebrex: Coincidentally I have rheumatoid arthritis; my personal experience is that Celebrex is my least-effective NSAID (my best was Vioxx but...)!

I shared my "early-METS" theory with the oncologist: He emphatically dismissed it!

Finally, many hours of online searching led me to a set of papers and articles discussing how chemo itself (which/all?) can produce MRI signal variation to give a mottled appearance of MRI's (irregular conversion of protein bone marrow to a fatty variant with different MRI response which usually likely reverts when chemo is stopped). The chemist in me suggests that change and reverted substrates would statistically be very unlikely be the same.

Cancer, its staging, METS, and this whole field is interesting by discouragingly tough business if we end up personally involved! One thing's for sure: We will watch more closely than ever going forward.

I appreciate all of your suggestions and help!

sandyv

I don't know the answers all I have is my own experience. I complained of back pain and weakness in lower extremeties for 2 years  starting 2010 but i also had slightly elevated tumor markers so I want to onc. in 2010 he ordered pet scan and my ins. denied but approved ct scans of chest, abdomen and pelvis all normal. Back pain continued to escalate so i was sent to rhuematologist, and cardiologist because of shortness of breath all of their tests were neg, too . then pulmonary Dr 6 months later who wanted to repeat ct of chest due to continued SOB and back pain .well that Ct of my chest showed blastic lesion in L8 and innumerable mets in every visable bone.  So next they did a bone scan which was totally normal! BUt they decided to do pet scan and my insurance approved this time (2 years later) which was positive for innumerable metastatic bone mets skull clavicles all of spine and diffuse sacral hip femur. by this time my tumor markers were very elevated. I guess the moral to the story is don't give up [f you think something is wrong. I just happened to go to a cancer center for that last ct scan so a different Dr read it otherwise I may still be looking for the reason for my back pain. Sorry for the long explanation but wouldn't;t want anyone to be misdiagnosed due to not getting that 2.3.4th opinion.

teds12

I see it as very unfortunate than any US citizen that has a history of cancer should ever be denied the best diagnostics in a timely manner going forward. In our case we have Medicare and Medicare is lenient in approving oncologist recommended testing. Keeping the best of care for the top few percent in this Country will ultimately undermine our social fabric and can only lead to the worst of consequences, of which you are a prime example.

The other thing that interests me is what the oncologists require to treat METS, or even how to define METS; in the most basic sense, a MET can be a single unvisualizable cancer cell. The oncologist we are dealing with can't see changing treatment regimens for "the hint" of a potential tumor and that seems reasonable. Have your doctors been able to deduce the exact MET site responsible for the weakness in your legs? If they have, what course of treatment is anticipated? In my wife's case, I am concerned about L1-L3 even though the MRIs appear stable because they represent "degenerative issues". My rheumatoid arthritis is hard enough to keep stable, let alone severe arthritic lumbar spine activity not to mention the septre of METs.

As I understand it, the radiation oncologists can arrest active bone cancer with radiation, but in the context of maxim dosage to adjacent structures.