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Spindel Cell Tumor

AABoldt
Posts: 5
Joined: Jun 2009

A little over a week ago, I had surgery to remove a mass from my groin area. The pathology came back stating it is a spindel cell tumor. The surgeon did not tell me over the phone whether it is benign; he said the pathology report didn't say. He referred me to meet with an oncologist this week before coming back to him for my post-surgical appt. I'm assuming maybe he wants me to see the oncologist to make sure it's all gone? Then does that mean this type of tumor is not benign?

Can anyone tell me what a spindle cell tumor is? Other than removing it, are radiation or chemo treatments common for this? If anyone could help me prepare a list of questions for my first visit to the oncologist, it would help me out tremendously. I'm a little overwhelmed by this news and the information that I've been reading on the Internet is scaring me.

Thanks!

Abby

newbride
Posts: 142
Joined: Jul 2009

My husband was diagnosed with a tumor in his sinus cavity which also had spindle cells which were malignant. I don't want to scare you but if you are being referred to an oncologist it most likely was malignant. Why the doctor did not explain this to you is beyond my belief. Doctors should not try to spare the patient but be upfront and honest. I cannot imagine any doctor relaying a pathology report without a clear diagnosis. Saying it shows spindle cells but not confirming malignancy or not does not say much for the doctor. However, that being said, reading between the lines, I see no reason to see an oncologist if there was no sign of malignancy in the pathology report.

With my husband's first surgery to remove the tumor they did not do chemo or radiation after removal and the tumor reappeared, he had a second surgery and will begin both radiation and chemo.

Best of luck to you...I will keep my fingers crossed your report is not malignant and the doctor really did not have the full results and sending you as a precaution.

Karena123
Posts: 2
Joined: Jul 2009

HI Abby,

I do not know much about this type of cancer only that I had an aunt who was 70 years old(two years ago)who was diagnosed with it. She had a lump on one of her shoulders that she thought she got from cleaning the top of a refrigerator, losing her balance and bumping her arm/shoulder hard against the gridge. she had a terrible cough for several months preceeding this occurance. She was finally diagnosed, but it was at stage 4..so the docctors told us chemo and radiation were not going to help her.
Sadly, she passed after a few months...we have tons of cancer in our family, I am a survivor, as is my brother. Our mom (her sister) was just diagnosed with in-operable pancreatic cancer. Trying now to determine if chemo and radiation will help to pro-long her life without making her sick for the rest of it. My prayers go with you. God bless you. do not give up hope, if they have caught it early and no mets have occured to other organs (my aunt had 21 lung lesions from the spreading of the cancer) you could have good luck with treatment and a long life ahead. Please stay positive and have faith in God and the Doctors who treat you.

shanie
Posts: 4
Joined: Aug 2009

I just read your post. Please ask your doctor to refer you to the Mayo Clinic for treatment. I just lost my mom to this horrible cancer and from the first symptom til the day we burried her was 7 weeks. This is truley a cancer that little is known about. The doctors at the Mayo did everything possible to save her. They talked about heavy forms of chemo and radiation therapy. They said that in order for the chemo to be tolerated the patient must be able to keep down nutrients. My mom could no longer hold food down because her stomache was displaced from one of the tumors and she had a hiatel hernia that she never had repaired. Mom went to the one in Minnisota. Moms was on her internal organs so there was no detecting the problem until it was to late. God bless and I will keep you in my prayers.

AABoldt
Posts: 5
Joined: Jun 2009

I wanted to follow-up with an update on my Spindle Cell situation and to also thank you all for posting your reponses and support!

Here's how it's played out...

In May, I had a Spindle Cell Tumor and a small margin of the surrounding tissue removed from my right groin area. My oncologist told me Spindle Cell Tumors are categorized as a sarcoma and are very rare, solitary, encapsulated and fibrous tumors, usually found in the lungs. They can be found in the extremities as well. He said they do not classify it as either benign or malignant because 1.) Their behavior is very unpredictable and 2.) It is so rare. There isn’t much data available on it. My oncologist had to consult with his mentor in St. Louis who specializes in sarcomas and sits on a national panel/board because it was the first one he had seen. He ran the pathology (immunohistochemical analysis to confirm the diagnosis) by him and they decided that they needed to take out a larger margin, another centimeter, which I went right back in for 3 weeks later. The second pathology came up clean and my oncologist is keeping a close eye on me; he requested visits every 4 months for the first year. I was told that if it were to return, it would be in the same spot.

However, now I have found another mass in my right breast, which feels very much like the one above - hard and marble-like. I went back in to the oncologist Monday and we're starting the whole process again...mammogram/sonogram/ultrasound and then to see the breast surgeon next week for biopsy and discuss whether surgery is necessary.

3 years ago, I was diagnosed with Premature Ovarian Failure at the age of 32. I was told one doesn't have anything to do with the other, but I still wonder. Does anyone know anything about hormone dependent cancer?

It scares me that there is very little data on Spindle Cell Sarcoma, especially now that I have another mass...just a month later. If anyone else has information on this subject, please include me in your correspondence.

Thank you!

star555
Posts: 1
Joined: Aug 2009

Hi I was really interested to read your post as I have just been told that I had a Spindle cell tumour in my groin after many opinions. I had the lump removed & the surgeon is happy that the surrounding tissue is healthy. CT scan & bloods were also clear & so I now feel that I can breathe a sigh of relief after many weeks of sheer panic. I also had Premature Ovarian Failure in my early thirties & have often wondered if this was related. I also had severe infected insect bites about 6 months prior to noticing my lump. Just about the only info available in the UK about Spindle Cell mentions that it is quite often seen in animals' extremities & after arthropod bites!! It seems to be too much of a coincidence that my lump appeared after these bites too. Nobody seems to have much info. or a reason why this has happened but I am just so blessed not to have any radio or chemo. I just have to be monitored in clinic/ultrasound every 3 months. I think that is a very small price to pay. Best wishes to you all.

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