Soft-Tissue Masses Not Diagnosed

Hello @tomlinaz, I can ‘hear’ the frustration in your voice as you write! With all of your testing to try and figure out what could be causing all of your symptoms, have you been seen at a larger medical institution such as a teaching hospital? You mentioned Mayo Clinic and hoping to see an orthopedic oncologist. Have you been evaluated at a Mayo campus for any of your previous testing?

Mayo uses a collaborative approach to medicine and doesn’t just limit to one speciality at a time. I’ve been on the receiving end of this interdisciplinary care where there were definitely some, what I felt were, “outside the box” and Herculean efforts to find an answer for me.
When you’re paired with a specialist it’s like having a general contractor. That doctor then brings in other specialists as needed to get to the bottom of the issues. It was an amazing experience to not have any chest thumping or egos displayed. Each on of my doctors are at the top of their fields and all work flawlessly and seamlessly together to get the best results and care for their patients.

From what you mentioned it sounds like you’re in the Phoenix area.
Here’s a link to the Mayo home page where you’ll find the number for the Phoenix campus. Give that number a call and a coordinator will take your information and get the process for an appointment started.
http://mayocl.in/1mtmR63
When is your MRI scheduled??

Thanks for the empathy - it is very frustrating. I've researched sarcomas extensively, as well as NETs (neuro-endocrine tumors) and other cancers and conditions that cause slow-growing masses. Indeed, the information I've found is suggestive that I have one of these illnesses - but, as I noted, I need a specialist who will investigate for these rare conditions and pinpoint my problem. Several years ago, I did see a rheumatologist, but he could not make any diagnosis...

Thanks, Lori. I've made many trips to Mayo Clinic Phoenix and have seen many doctors there. I've even been to the Rochester campus a few years ago, along with Scripps near San Diego CA and the MD Anderson group associated with Banner Health in Phoenix. I think the issue is, as I mentioned, is that the specialists I really need to see to get a diagnosis are specialists I can see only if I have a diagnosis. It's been very helpful getting feedback from this community. I will keep hoping that something breaks in my favor soon. If nothing else, then maybe the thigh MRI really will find something (scheduled for May 18).

Ever watch the TV show "House"? He is a diagnotician and the world needs more physicians that can play detective for all of us. That being said, maybe with all your current symptoms and recent tests, an expert Oncologist can arrive at a diagnosis for you.
Keep looking for clues and best of luck in your search.

@tomlinaz
Genetic aka Diagnostic testing is used to precisely identify the disease that is making a person ill. The results of a diagnostic test may help you make choices about how to treat or manage your health.
Predictive and pre-symptomatic genetic tests are used to find gene changes that increase a person's likelihood of developing diseases. The results of these tests provide you with information about your risk of developing a specific disease. Such information may be useful in decisions about your lifestyle and healthcare.
I intend to pursue this as a way to determine what type of Chronic Pancreatitis that I have and whether there is a genetic component for my adult children.

Well, I had the MRI on May 18. All that was noted was a "slight asymmetrical prominence of the subcutaneous tissue at the anteromedial aspect of the thigh measuring up to 1.4 cm in thickness medially versus 4 mm laterally. Scattered minimal subcutaneous edema in this region. The diffuse nature of the enlargement is not what is typically seen with a mass like lipoma.”

Through another series of events (too long to describe here), I contacted an Undiagnosed Mass Clinic in Mayo. When I made that "self-referral", I didn't know that the hematologist I was seeing would also refer me to the clinic. After she did, I got the following message from her office:

"[The doctors] have reviewed your MRI results and here is what they said: ‘The MRI shows us that there is “no focal mass or aggressive process”. Therefore, the patient's concern is outside the scope of the Undiagnosed Mass Clinic. Meanwhile, he is asymptomatic. Observation is probably all that's needed. Seems his situation would best be served by a primary care provider.’ ”

Well, if there are no focal mass, aggressive process or symptoms, what needs to be observed? In fact, I am not “asymptomatic”. I reported many symptoms to the hematologist, the undiagnosed mass clinic, the complex care program, dermatology and orthopedic oncology. These include a visible lump in the thigh, that looks about 2 in. by 3 in., definitely larger than the pecan-size “enlargement” reported in the MRI. There is also pain, skin redness and a change in skin texture in the area of the lump. This 2 x 3 lump is what the other medical professionals saw, not a pecan-size enlargement in the subcutaneous layer. And I doubt that I would be concerned about such a small enlargement, if I would even notice it at all. So, why would I contact all of these offices at Mayo Clinic, if I thought that the only thing going on with me was an asymptomatic, pecan-size enlargement in my thigh?

Further, it was not my decision to focus on my thigh. I reported a number of other lumps and symptoms that I believe are more concerning, such as the lump on my head, the pain and swelling in my neck, the scarring in my lung apexes, the lumps in my abdomen and groin, and the new hair growth all over my body. I reported these also to all of the offices above. Why are these concerns all being ignored and only a “pecan” being discussed as the basis for decisions about my health care?

As for the recommendation, it has been established that I cannot get into primary care at Mayo Clinic now. So, it seems that the recommendation means I’m being told to take my concerns elsewhere than Mayo Clinic.

Wish I had some positive news or suggestions to share, but unfortunately, this is how things stand now...

No answers, just another Arizona native that can commiserate- “undetectable” on imaging yet visible/palpable lumps are frustrating and awful. I hope you get answers, and that when you do you can also get treatment.

Thanks so much, "Lemon Pepper" (great name!). As you apparently know also, I think it's very difficult to go from feeling some hope to feeling almost despair to summoning the courage to keep searching. I found this article recently from 2018, and it was very helpful to be reminded that neither you nor I nor anyone else in this situation is alone: https://health.usnews.com/health-care/patient-advice/articles/who-can-help-me-with-a-rare-disease

I have about half a dozen appointments scheduled with various medical providers in the next month. My hopes are not high, but who knows? Maybe "the stars will align" on one of these visits... (fingers crossed)

J'accuse - or things I've learned about the medical industry recently:

1. Apparently, there are multiple settings on something as simple as an x-ray that determine what types of things (e.g. "hard" tissue, soft tissue) show up well, or show up at all. Ditto for ultrasounds, CTs and MRIs: there are many settings on the machines that determine the clarity of the images, what sort of tissue the images highlight or leave obscure, the level of detail, etc. For CTs and MRIs, there is also the "thickness" of the slicing - it could be 0.1 cm or 0.75 cm, and a lot can be missed in between those "thicker" slices. For ultrasounds, the "wand" that is used can change whether the image taken is detailed but "shallow" or more vague but "deeper". In short, so many things can be missed in any imaging study, just because of how the radiology tech set up the machine.
And I wonder how many of those radiology techs, and even radiologists, are aware of all those setting, and know how to use and interpret them properly. Because it seems to me, that it is well-known that many medical problems are missed multiple times before an imaging study is finally done "correctly" to reveal the problem. And yet...

2. Radiologists seem to be treated as "gods" by most clinical physicians. Too many times I've heard, "the radiologist didn't find anything" vs. "the radiologist didn't report seeing anything"; or something like "well, an MRI is the gold standard", etc., etc. Or if one asks a clinical physician to question a radiologist, the clinical physician often "dances around" the request.
And I wonder how many clinical physicians are aware of all of those imaging machine settings, and understand how much influence the ICD that they put on the imaging study order will have on what the study reveals. Or maybe the clinical physician is concerned only with whether the ICD will pass through the insurance claims process so that the study gets paid for. Which reminds me...

3. After I had cancelled an appointment at MD Anderson in Houston (another story), I got a notice that MD Anderson had gone ahead with a re-reading of the slides from a bone marrow biopsy from Mayo in February 2023. Since I had cancelled, I contact MD Anderson, Medicare and my supplemental policy and told them not to bill insurance, not to pay the claim and not to charge me. The only significant reply I got was from the supplemental policy, who informed me that, while I believed the re-reading was not needed - because I didn't have an appointment! - the claim was submitted properly according to contract, and was paid accordingly!!
In short, the current setup of the medical industry apparently does not favor finding correct answers, but instead favors submitting claims for appointments, tests, etc. according to contract so that they are paid!

In truth, I feel right now like I have about six months left in me - that is how bad I am feeling these days. But given the suggestion above of the current state of the medical industry, I am despairing that I will get a diagnosis before then.

Thank you to anyone who reads this post, and I sincerely hope that your story has a better ending than what mine appears to be right now. Hugs.

To understand this post, imagine that this is a letter to a primary care physician I have seen several times. In fact, I was going to send this message to a PCP, but someone dissuaded me from it, because a PCP might be too unfamiliar with the cancers I bring up, and might not receive my forwardness very well.

So, I am posting the message here for two reasons. One, the far-off-chance that a doctor might read it, see my plight, and take some action on my behalf. Two, in the hope that someone who does read it might know how I can get in contact with such a doctor, or have some other lead or suggestion that might get me on the path to resolving my plight, i.e., to getting me the diagnosis I am needing and seeking.

Thanks
______________

Dear Doctor,

I have decided not to have a colonoscopy at this time for two reasons:

One, my weight loss started before Jan. 2021. Any colon cancer severe enough to cause all the weight loss I’ve had over two-plus years should, I believe, have shown up on one of the two ultrasounds or two CTs that I’ve had in that time (CT Ab Pelvis With: Feb. 06, 2023 and Feb. 25, 2022; US Ab Complete: Sep. 29, 2022 and Oct. 01, 2021).

Two, anything going on in the colon would most likely not explain the symptoms in my head, mouth, neck, lungs, ribs, hands, thigh or feet – except as metastases. But again, I believe the colon cancer would have to be so severe that it could not have escaped detection by other means.

But I would like to offer my current thoughts on what does explain my illness. While reading them, please consider that I’ve lived with increasing symptoms for at least 10 years, and that I have made a significant effort over the past seven years to research my symptoms and possible causes. So, I believe these thoughts are not mere rash opinions, although I am first to admit that I don’t have anything at all like the knowledge and understanding of a trained doctor.

But based on what I have been able to learn and understand from my research, I believe right now that there are two potentially plausible explanations.

One is a melanocyte cancer, i.e., melanoma. Clearly, this is not skin melanoma in my case. So, it would be an internal melanoma. These are rare, I understand, but not unknown. Two types of this cancer could explain maybe 90% of my symptoms – mucosal melanoma and clear cell sarcoma (also called melanoma of soft parts):

• Both kinds of cancer can be very slow-growing.
• Mucosal melanoma could explain lumps in the right nostril, inner right cheek, right side of tongue, on and inside of anus, and possibly the lung scarring.
• Mucosal melanoma is often misdiagnosed as some other common condition, such as hemorrhoids.
• Clear cell sarcoma affects mainly areas with tendon tissue, including fascia and aponeuroses. This could account for lumps in the head, neck, ribs, hands, thigh and feet. Lung metastasis is frequently seen with this illness.
• Based on what I’ve read, clear cell sarcoma is difficult to recognize on radiology studies. It is also often misdiagnosed as some other common condition, such as tendonitis.

The other possible explanation is neuroendocrine tumors. As I understand, they are usually small and slow-growing, and therefore difficult to detect. And they could explain the tongue lump, lung nodules and scarring, as well as the lumps on my left testicle and in my lower left groin, the new dark hair growth all over my body, and the weight loss and fatigue.

Of course, it is very possible that I don’t understand these diseases at all and my thinking is way off-base. But these are, I believe, good examples of the kind of inclusive explanation I am seeking and believe would be correct.

I hope you will believe that my only motive here is to find this explanation. I suspect I may be “out of bounds” in offering medical opinions to a trained doctor, who obviously understands much more than I do. But, as I have tried to say frankly to you, I am suffering and mostly “at wits’ ends”. So, I feel that I need to make this attempt to push efforts to find a cause forward as far and as quickly as possible. But I do apologize if I have unintentionally offended.

Thank you.