Synovial spindle cell sarcoma, left lung. Anyone else have this?

@scs23. Good morning. It sounds as if you have had a battle that must have been extremely difficult to handle. I've had many different lung tumors, but they have been over a series of years.

You had two surgeries that changed the topography of your chest wall, and I'm not surprised that you still have some pain left. The skin and other soft tissue around your surgery site are loaded with nerve endings. Massaging it might help. Or, ask your surgeon or his nurse for suggestions

The following are from sources found by Google:

"Sarcoma is an uncommon group of cancers that arise in the bones and connective tissue such as fat and muscle. In most cases, it’s not clear what causes sarcoma. Family history and exposure to chemicals or radiation may increase risk. Symptoms depend on tumor type and location. They may include a noticeable lump or pain. Treatment may include surgery, radiation, and chemotherapy."

"Synovial fluid, also called synovia, is a viscous, non-Newtonian fluid found in the cavities of synovial joints. With its egg white-like consistency, the principal role of synovial fluid is to reduce friction between the articular cartilage of synovial joints during movement."

I imagine that "spindle" describes the cell structure- like a spindle: a slender rounded rod with tapered ends."

I can't imagine that you would feel anything but petrified. I know that I would be. Try and use what has worked for you in the past.

I look forward to your keeping us updated and what your doctors say about this rare cancer.

Merry

Hi @scs23, I'd like to add my welcome. I can imagine that it is scary to see the tumor grow so quickly.

I believe that fellow members like @ellengrubb @everythinglucky and @janetamyshapiro1956 have experience with synovial sarcoma of the lungs (primary or metastasis).

Scs23, is the tumor in your lungs primary cancer or metastasis that spread to your lungs from somewhere else in the body?

Hi Merry @merpreb Thank you for the suggestions and information. I actually just found out that my cancer is back. A ct scan last week showed two masses, one is small, and one is quite large. The doctors are figuring out what treatment is next. I'm still trying to wrap my head around all this again.

Hi Colleen @colleenyoung Thanks for adding my discussion to the cancer support group. The cancer in my lung is primary cancer. Its one of things that makes this so rare. It isn't usually found in the lungs, its usually found in soft tissue or bone.

I was diagnosed with Kaposi’s sarcoma in a very small breast tumor during a routine mammogram. 6 weeks and many many tests later, no Dr can find out why I have this. Very, very rare in women. Don’t fit any part of profile. from Herpes 8 virus. No HIV ever or any other related viruses. I am a 78 year old woman who is fit and reasonably good health for my age. I will be having partial mastectomy in July but still waiting on results of other biopsies which so fare have been negative. My drs and hospital are partners with Mayo and they confirmed biopsy and pathology. Because it so frequently recurs in other soft tissues, would love to hear from anyone who has or had a nontraditional Kaposi sarcoma and treatment received. Jrs

@jrs2024, I'm sure you and your team were surprised to find out the the breast tumor turned out to be Kaposi's sarcoma and not typical breast cancer. I can understand why your doctor's confirmed the pathology with Mayo Clinic. Thank goodness that they are being so thorough so that you get the most effective treatment for your version of Kaposi.

I'm connecting you with @cc44 who is a sarcoma survivor and a peer support person as well as @mir123, who had a neuroendocrine tumor of the breast. While they don't have the exact same diagnosis, they both understand the challenges of having a rare cancer. And in the case of @mir123, a rare cancer that appeared in the breast.

@jrs2024, while your cancer is not breast cancer, you may also wish to follow some of the discussions in the Breast Cancer support group as you prepare for your mastectomy. Do you plan to get reconstruction? Do you have questions about the surgery and recovery?

Thanks Colleen for connecting me. @jrs2024--this must certainly have come as a shock. I have a NET in the breast, so can't speak specifically to your situation. But with a very rare cancer I can just check in and send you my best. I found the uncertainty to be difficult--and still do. That is, no real studies or protocols. I'm glad your hospital is partnered with Mayo (as was my oncologist). Do you have any idea if you will have additional treatment?

Thanks for the contact and sharing your diagnosis. Beyond the breast surgery, I may have to have a lesion removed in my colon. Just had colonoscopy and endoscopy yesterday and will take 7-10 days to get results of biopsy. Yes, the lack of knowledge and experience by medical professionals with this type of cancer is scary. My second oncologist has at least treated it in the past in at least one woman. Until all preliminary tests are reported, I can’t have any surgery nor will I know for sure about additional treatment. With just the small .5 or .7 cm breast tumor, the oncologist didn’t think I could need anything else. However, with potential second cancer, I don’t know yet. It’s been 6 weeks since I got first biopsy results and I’ve learned as much as I can about this very rare cancer. In the 80 and 90’s it was mostly in HIV positive males. Mine is not sexually transmitted and they have no idea how I may have contracted virus. Mostly found in Eastern Europeans or Jewish males at younger ages. I fit none of profile characteristics. Have had skin biopsies, CT full body scans, multiple blood tests, full genetic testing and fortunately every other soft tissue area has been negative with no identification of cancer in body scans. However, very concerned about colon biopsy although only about 20% of these lesions are cancerous.
Oncologist says most likely will not die of this but could have recurrence and additional treatments as it is treatable but not curable.

What is NET breast cancer and how have you received treatment?

Article in Washington Post on Sunday, June 9 told of group of oncologists in SC who are exploring connection between having had Covid virus and very rare cancers, particularly in older adults. I had 4 Covid shots and boosters but still had a mild but different case of Covid in 2022.

I’m learning everything I can as it only knowledge power that I have. There are lots of articles in National Medical Library and Up to Date(a subscription medical journal I joined for 2 months use). Both have been helpful for a little understood and very rare sarcoma.

Thank you for reaching out. It you have further information sources or any additional treatment information, please let me know. Jrs

I appreciate learning more about your situation. I have say that you seem on top of the information you have and although this kind of situation is beyond stressful your positive and realistic attitude comes through. Neuroendocrine tumors are usually digestive. I've had four pathology reports and they all differ somewhat--my oncologist & I decided to just trust Mayo's. It is treated as "ordinary" breast cancer--but outcomes are pretty murky. I had a lumpectomy, 15 radiation treatments, and take letrozole, an aromatase inhibitor. All of this was/is quite tolerable. I didn't do chemo due to co-morbities--mostly kidney disease. My nephrologist didn't even want to sign off on anesthesia for lumpectomy, let alone most of the chemo drugs. This lined up with my approach, so I was fine skipping it. I've been told it is likely the cancer will recur, but I've had a terrific past year having finished treatment and doing well. I'm 70, and a kind of "live in the present" person. In a way I think I've come to accept that I'll never know the"why" of this rare cancer. At least it brought me to mayo Connect, which really helps. Keep in touch!
Interesting about COVID. I've had the vaccines, and never tested positive. I did have a very unusual influenza in my youth, but have no way of knowing if related--just thatI seem to be an unusual patient!

Thank you for your response and information. Your treatments sound doable while still having quality of life. My number one hope right now is breast tumor is only one cancerous. I can easily deal with partial mastectomy and radiation as I had that 9 years ago with a stage 0 DCIS. Right now awaiting for biopsy results for colon lesion is creating most stress. I’ve done pretty well with handling everything else but stress fatigue for 6 weeks is beginning to take its toll.

I would love to follow your progress and treatment and love your positive attitude of living in present. I unfortunately have a spouse with short term memory issues getting worse and I am primarily care taker. I’m trying to make plans for some part time at home care for both of us before I start surgery/ treatment.