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Spindle Cell Tumor

lynnmf
Posts: 2
Joined: Sep 2005

On Sept 2 a tumor was found in my abdomen. On the 9th I had surgery and was told that a soccer ball sized tumor was removed from my abdomen. It had been attached to the omentum. They also did a complete hysterectomy - for other reasons. There were carcinoid tumors on my intestine and 6" of it were removed. I don't see the oncologist for 2 weeks as they wanted to look into this - apparently it is something rare. Anyone who has info I would greatly appreciate hearing from. Thanks

nikanmsh
Posts: 1
Joined: Sep 2005

Hi,

I happened to be surfing around within the site and I saw your message. You mention your surgery for the tumor that is called a spindle cell tumor. It sounds like it is leiomyosarcoma, a very rare tumor, even more rare in the abdomen. It is muscle cells, thus the "myo" part and muscle cells look like spindles under a microscope. I, like you, had a very large tumor, the size of a football taken out almost two years ago.
Is this your first time to the website. It is a great place to find others who have experienced similar situations. Tell me about what you are being told about your tumor and further treatment. I am in contact with two others I met on this site. God bless you and you have people who understand what you are going through. I'll close for now, but hope to hear more about you.
Hoping to hear from you, nikanmsh

lynnmf
Posts: 2
Joined: Sep 2005

Sorry for the delay in replying. We were dealing with the hurricane and I've returned to work so everything else has been on the back burner.

I was told that this was very very rare. At the same time they did this surgery I had a complete hysterectomy. They have said that they believe it is all the more so because it looks as if it started from part of the endometrium which would mean it had to "escape" from the uterus and lodged onto the omentum. At this time they have opted for no radiation or chemo and no HRT as they believe that hormones had something to do with it.

All has been well up until about 3 days ago when I felt some soreness in the area again and it has escalated to the feelings I had when it originally began so I guess the next step will be to contact the dr again early in the week.

That is about all I know at this time.

AuthorUnknown
Posts: 1564
Joined: May 2006

Hi - I have this type of tumor - it started in the uteris and is now in the abdomen and also very big like a football. What type of treatment did you receive - this is the second time it has come back and I am pretty upset as you can imagine.Very hard not to know of anyone who has this type of cancer. Anyone else out there?
Hope to hear from you,
Chris

lynnf's picture
lynnf
Posts: 1
Joined: May 2006

I hate when I forget log in information! Anyway, Hi Chris. I was kind of blown away when I found your message. I am getting ready to go back to the hospital for tests to see what's going on. They are concerned that mine has returned. Guess we will see. The "issues" I was having in November was just me being paranoid but this time there's pain, swelling, fatigue,etc.so it's back in for tests. When they did the initial surgery in Sept. and did the hysterectomy the lab reports came back that everything in that aspect was clear but they still feel that somehow a part of the endometrium escaped. I'm sure stranger things have happened. At my post op I was told that this is very rare and there were not enough studies to show that chemo/radiation had any effect and so the choice was basically mine - did I want to get sick with the treatment that may or may not work or wait it out 6 months and see. I chose the 6 months. Amazingly it's 7 mths and I'm now having issues again. For the past 6 months my biggest issue was hot flashes. Since they won't let me do HRT nor anything herbal because of the phyto-hormone issue I have been miserable at times. They put me on celexa due to some issues I had with Effexor but I stopped taking it - it wasn't making enough of a difference for me to justify taking it. I hate drugs of any sort so if it's not working I'm not taking it. So right now I'm just waiting to see what this is. Hope everything turns out well with you.

twinsmom
Posts: 1
Joined: May 2007

Hi, My name's Bev. I hope you are doing fine now. This is my first time doing anything like this. I was first diagnosed with a spindle cell sarcoma of the breast in March of 2004. I had just the surgery and the doctors said I didn't need any other treatment and it wouldn't come back. Guess what it's back. I found a lump under my arm in March of 2007. (I don't think I like the month of March.) The doctor's in my hometown have sent me to the University Of Chicago Hospital because they have sarcoma specialists there. I'm the only person in my area in the last 7 years to get this kind of cancer. I will be having radiation and chemo after. Is there any one out there that has gone through this cancer in the breast and what were your treatments?

neverland_lost
Posts: 1
Joined: Jun 2008

I'm Liz. Just found out this morning that I have a spindle cell tumor retroperiotoneal, near my kidneys and aorta. They say this is good news (as opposed to it being a malignant, metastatic type of tumor) but I am confused by reading your posts. It seems this type of cancer does return and has, in some cases resulted in tremendous loss of quality of life. I go to a surgical oncologist in the morning. What should I expect? I didn't think I'd have to go through chemo or radiation, just surgical resection. Now I'm just horrified!! How are you folks doing? I have a history of endometriosis and two subsequent c-sections - does anyone know if there is a link there?

dfrank
Posts: 5
Joined: May 2010

4 years ago my wife Mary had a lumpectomy and it was diagnosed as Spindle Cell Sarcoma. She just had a full mastectomy as she had a re-occurrence in the same breast with a tumor that grew to 3 cm in less then 6 months. Now just 10 weeks later they have found a blockage in her left Bronchial Tube and two spots on the left lung that are also Spindle Cell Sarcoma. We are looking for Doctor's with experience in this area, Studies, Trials, etc to help us with this battle. She is now at the Cleveland Clinic undergoing a Stendt through the tumor to open up her airway and give her lung capacity until we find a solution. Please forward this to anyone that might be able to help or give us some input on were or who to contact.

Carltish
Posts: 1
Joined: Jun 2010

Dear Dfrank,

My wife and I have studied natural alternatives and one of our dear friends
I believe has this rare cancer. For the last few years she had problems with
with air pockets developing under her right lung do to the lung separating
from the tissue as well as formation of tumor growth. Her physician would
perform a surgery for the collapsed lung and reattach the lung in its former
position. Time would elapse and our friend would start to feel tired and
lose weight and the lung would suffer the same symptom.
The doctor never mentioned Spindle cell although his medical diagnosis
after research on my own indicated that this was a spindle cell issue.
I think that there is much more research needed regarding this rare cancer
and the research will need to be accomplished on the part of the medical
centers and the patient. Please share what you can.
We are going to attempt to use many herbal formulas and light therapy
which there are some science for the light.

This is a new path for all. You are in our prayers.

Carl

WilsonC1
Posts: 1
Joined: Aug 2010

My name is Wilson, I am a 48 year old male. I wish I was here to speak about my cancer. But for me, its far worse. My 23 year old daughter was very recently diagnosed with Spindle Cell Carcinoma of the breast. Seems that this is a very rare form and even more rare considering her age. Needless to say, I am devastated. I hope your loved ones are doing well after their episode with SpCC.
Please continue to post you expereinces as it helps greatly to the newly diagnosed and those that love them.
Thank you and be well.

Wilson

24242
Posts: 1417
Joined: Mar 2001

It must be very painful hearing such diagnosis but knowledge is power even though it won't feel that way. We have to hang onto the stories and experiences of others that have survived amazing things because truly LIFE JUST IS sometimes. Yes if there is anything I have learned from my own Breast Cancer survival was it was extremely difficult on my parents and we lived with a province between us since I had just moved. I was young 14 years ago when I knew I had cancer long before doctors would even check. I was 36 and had a lump of no concern a fibrous cyst. Finally 7 months or less I was so ill and found out I was stage 3. I would like to believe they look a little more and further than they did back then.
The best of such an experience is the feeling of being surrounded by people who actually care and love us. Support can make all the difference in the world and finding the humor where most wouldn't find it.
Go to the breast cancer discussions as well they are very warm and welcoming.

athena81
Posts: 2
Joined: Jul 2010

Hi Wilson, My name is Amanda, I am 29 yrs old and I also have spindle cell carcinoma of the breast (dx at 28 with breast, just found out it was spindle cell last week). If you or your daughter have any advise or have learned anything about this rare type of breast cancer I would appreciate if you would share with me. Thanks, Aj

Findingout
Posts: 132
Joined: Dec 2010

Hi Wilson, Just wondering if you're still online and how your daughter is doing and what treatments she is receiving. I was just diagnosed with the same thing and am researching as you were - seems quite rare as a form of breast cancer. Sending all my best for her health.

Kate-A
Posts: 2
Joined: Jan 2012

sir, did the hospital doctor recommend after surgery, an X-Ray (chest) every 3 months
and then every 6 months, and then one once a year ? Why you may ask? Well Spindle cell
Sarcoma is well know to migrate to the lung if not carefully watched after surgery.
Most Sarcoma clinics are labeled :" Sarcoma/lung clinic ." I do not know what the percentage was of it returning in your wife's case? But most of the time the doctor will tell you 80% or 97% cure rate and that perhaps 20 % return and that is why the 3, 6 aand one year X-Ray follow-up is done. I hope this helps you ?

lindalou1213
Posts: 1
Joined: Jun 2010

I was diagnosed last December w/this in the endometrium of my uterus...had complete hysterectomy and lymphectomy, etc., went through radiation and given the choice whether to have chemo. Radiation has been shown to be effective, but not chemo. I was sick enough from radiation so chose not to have it. Hope all is well w/you and had a full recovery. Please let me hear from you, this is a rare type of cancer. Hope to hear from you soon!

highland's picture
highland
Posts: 1
Joined: May 2008

Well Wishes to all. Was diagnosed with sarcoma Nov. 07 by a DDS. Had 3 chemos and a tumor 4" in thigh removed in April. Received another chemo, was told I have tumors in my lungs and adrenal gland. I'm refusing chemo. now. Started building up my immune system, exercising, oxygenation and strengthening the white and red blood cells within the body, raw food minus anything processed etc. I'm feeling great both physically and mentally. Death has become something I'm training to fear not, not that I look forward to it. Are Chemo, radiation and surgery our only savior? Surgery, yes. Anyone who has taken on this cancer the old fashion way?

Sherry64
Posts: 5
Joined: Sep 2008

YES! I was diagnosed with spindle cell a year ago. I had a limb salvage surgery to remove the softball sized tumor just above my left knee. The tumor erroded a hole in my femur and was stage three when diagnosed. I had accellerated radiation followed by sugery in November of 2007. Surgery was a success! I had a total knee replacemet, 1/2 of my femor removed and replaced with prosthesis. The tumor had come through my skin and therefore had a skin graft. It also wrapped itself around my femoral artery which was by-passed with one from a cadaber. No chemo or radiation after. Trying to build and strengthen my body now. I still have my leg and am walking without assistance. Thanks to God, and the doctors at Cleveland Clinic.
Keep fighting!

Kate-A
Posts: 2
Joined: Jan 2012

Sherry it sounds like you have had a very long road getting better. But I must tell you that in the medical community there is much debate on whether or not after surgery , patients should be complimented
with Chemo and Radiation . I believe God is the great healer ! But with returning sarcoma someone should be seeing you and monitoring you carefully ! They really shuld consider radiation again if it returns.

ronniem
Posts: 1
Joined: Jul 2010

I was diagnosed with spindle cell sarcoma in my right foot in 1998. There was very little knowledge of this type of sarcoma back then and after having the very small lesion removed I was monitored with CT's and MRI's. a year later I had moved to a different Province in Canada with the very same symptoms... They performed surgery and told me that the cancer had returned but they had taken it out and I should be fine. I made a phone call and went back to my previous clinic and was told once again that they would recommend amputation. I was sent back to a surgeon in my new location and he agreed that amputation of the affected area was probably best. I chose to go aggressive and had my right leg removed below the knee in September 2000. I had no other treatment... I'm guessing because I chose drastic surgery. When we moved yet again to another Province in Canada I was referred to the Cancer clinic where they followed me with CT Scan's every 6 mths then 10 mths.

In December 2008 we moved back to the Province where I had my amputation. Now I have had an MRI on my right elbow as there is a small pea sized lump there. I got the results of that scan yesterday and have been told that I have 4 lesions that are measurable and at least another 4 foci that could be the same. One of the lesions is 0.5 cm from the radial nerve, another is 0.4 cm from the brachial artery. the report states at one point: "Particularly given the patient's history of previous spindle cell sarcome, as well as the dense enhancement some of these lesions demonstrate, certainly metastatic disease would have to be considered, and histologic sampling with a view to complete excision of all or as many of these lesions as is technically feasible or possible is suggested, particularly as they may or may not all represent the same process."

As you can imagine I'm pretty upset... the lesions are all under 1 cm in size but to have so many in one area makes me wonder do I have others in my body that we do not know about. Is it a re-occurrence of spindle cell sarcoma? I've beat this thing for ten years and now here I am again... I guess the positive side of all this is they know more about spindle cell sarcomas than they did back in 1998.
Thanks for listening.
ronniem

Jude39
Posts: 1
Joined: Sep 2011

HI - I hope you are still here in good health and spirit - even though it might be without a leg or legs- there is still so much you can do and enjoy.
I've been struggling with Spindlecell cancer for five years now. I had a small lump removed from the back of my leg five years ago - They opened up my leg and there was a huge scar which took a long time to heal. They told me it was OUT and unlikely to come back. Twelve months ago I had two nodes taken out from the same place amongst the scar tissue. This time only 20 stitches and it healed quite easily. Last may I had a lump taken out which was benign , and currently I'm sitting in a chair with ten stitches in my leg from a lump I had removed on Thursday. The biopsy results will be out next week. They say the cancer is not age related, but I'm wondering if it is related to HRT somehow. I can't find out anything much on this cancer- except that chemo doesn't work well on it and when it spreads it tends to spread to the lungs - hence requiring annual chest Xrays. Any more information is much appreciated.

Wendyuk
Posts: 2
Joined: Nov 2011

I was diagnosed with spindle cell carcinoma of the bladder in february 2001. I had a radical cystectomy and hysterectomy. I was told this cancer was very rare and especially at my age of 29 at the time. I would just like to send you all hope as im a survivor of ten years. God bless you all an stay positive sending many hugs and much love xxx

Wendyuk
Posts: 2
Joined: Nov 2011

I was diagnosed with spindle cell carcinoma of the bladder in february 2001. I had a radical cystectomy and hysterectomy. I was told this cancer was very rare and especially at my age of 29 at the time. I would just like to send you all hope as im a survivor of ten years. God bless you all an stay positive sending many hugs and much love xxx

Crofty
Posts: 1
Joined: Nov 2011

Hi I just saw your post wendyuk, I am just recovering after surgery to remove a spindle cell tumor from my bladder. I'm 26, and a little confused by it all and have been told it is extremely rare. Doctors here in Australia had first thought it to be paraganglioma, but after part of the tumor being sent to Boston in the U.S, this is now what they think to be spindle cell. Can you tell me anything about what you have had to go through? Just an idea would be nice :) thanks

mcjimenez
Posts: 3
Joined: Dec 2011

Were they able to remove the tumor without removing the bladder? Or did you have to have a cystectomy?

mcjimenez
Posts: 3
Joined: Dec 2011

Were they able to remove the tumor without removing the bladder? Or did you have to have a cystectomy?

FayCoTodd's picture
FayCoTodd
Posts: 11
Joined: Dec 2010

I recently had a tumor removed from my lung that was 1 cm, was diagnosed as Spindle Cell Sarcoma, since PET Scan showed no other uptake except for the known tumor they are telling me that it was more than likely the Primary location and that in all intents and purposes I may be cured, but they will monitor with 4 month CT Scans for 2 years, should I be worried? My care is under the direction of the Veterans Administration, all of this is being told to me by the Thoracic Surgeon who removed the tumor, I have yet to see an oncologist, or anyone who specializes with cancer.

aliceniki
Posts: 6
Joined: Apr 2011

I have spindel in my thyroid from2008 till now I had no treatment or surgery and I.doing fine .but if spindel cell is so rare how cam so many people have IT? PLEASE STAY AWAY FROM CEMO

spindlecell
Posts: 1
Joined: Jul 2012

Yes very rare. 4ish years ago pea size on forehead.

All I could find was a story on a dog. An article 15 (males) in Japan died. I am female. Only info was 1 out of 5 get the cancer back; didn't say same place or different place in/on body. Mine was tender sore size of pea on forehead occasionally an intense sharp pain
led me to believe it was not a cyst as I put off. Doctor worried, sent me immediately
to dermatologist who immediately sent me to surgeon for biopsy. Three pathologists and immediate surgery. Ended up cutting uneven lightening type scar 4" long and ends about 1 and half pulled back and scraped area out.

Interesting the posts as could find no stories before. Normal head face.
Recent article before this site, was a man in Japan in tooth molar area. Pictures, a case someone went very long before seeking help. Notice this on other rare cancer pictures.

And that article worried me as I'm having problems in that area, right side, but deep inside ear, jaw, nothing seen by ears checked teeth checked. Blood count no sign of infection. My eyes are really getting bad, and that worries me because of forehead which healed great scar not real noticeable.

Back then I looked everywhere internet and doctors told me I wouldn't find anything because it was so rare. And I figured, being so rare is why they don't care to learn about it.

QUESTION. My insurance isn't good. I wonder which CT scan MRI or Petscan best to get a doctor to do. I'm tired and can't remember the differences right now, and seeing one doctor tomorrow. Don't want to get milked.

Prior military medic, PTSD and military studies say good chance of cancer and lot's of illnesses. Darn right stress can kill you. PTSD lot's of problems and pain entire body so many symptoms I'm always waiting to long to get treatment. Spent to much time wasting money.

I will end this with I do not suggest radiation or chemo for this, for many many reasons from experience in medical field.

Your stories are so interesting and only ones I've heard.

mimijohnson
Posts: 2
Joined: Dec 2012

I was just diagnosed on 12/5/12 with spindle cell carcinoma. I was at MD Anderson for my annual checkup. I have had a lump on my neck for quite some time. When I was having an ultrasound of my breasts, I pointed out the spot on my neck. The technician called in a radiologist, who called in another radiologist. They did a needle biopsy of the lump, and by the time I left the hospital, I had a preliminary diagnosis of spindle cell carcinoma.

I was completely floored by the diagnosis. I am anxiously awaiting return of the complete pathology report, so the doctors can determine my treatment. There is so little information on the internet!

I will post again when I know more. It is comforting to find a group of people who have shared the same diagnosis.

Krystal_and_Larry
Posts: 1
Joined: Jan 2013

Well, I am totally confused and need help here.... My girlfriend just lost a big part of her right lung on 12/21/12 to a Spindle Cell Sarcoma. Biopsy showed it to be benign but why such a radical surgery for a benign tumor?? Also, we were told it's very rare, especially for someone of her age, 27. She has had alot of medical problems over the last few years such as losing her gall bladder, appendix, cysts on thye overies etc. What could be the possibility this is all related? Just seems very odd that someone who has been healthy all her life can in a very short period of time have so many problems crop up. Any words of wisdom, advice etc would be appreciated.

robinsummers
Posts: 1
Joined: Jun 2013

My brother has Spindle Cell Neoplasm Lung Cancer.  Is there any one out there that specializes in this type of cancer?  Any help would be appreciated.  I don't want to lose him.

Robin

seajoy88
Posts: 1
Joined: Jul 2013

Hi Robin,

 

My brother was diagnosed with spindle cell lung cancer (Stage IIB) yesterday. The doctors still need to determine whether it is sarcoma or carcinoma. I can't find much information about this type of cancer so I would be interested in anything you or anyone else on here knows about it. I hope that your brother and mine can beat this cancer.

 

Take care, Joy

jrmhgreene
Posts: 1
Joined: Aug 2013

I just my pathology report and just found out that i havr the same thing... I trying to figure out whats next...

kstevenson127
Posts: 1
Joined: Sep 2013

Hello All,

I am 25 years old, battled malignant melanoma two years ago and today I received a phone call this morning from my doctor stating that what for years was thought of as a "cyst" on my back tested as Spindle Cell Neoplasm.  It's about the size of a pea and they are going to have me go in next week for tissue removal to be tested.  Why isn't there more information about this type of skin cancer online?  

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