New here, recently diagnosed with a rare form of cancer

GreyHoundGirl

I wanted to share my story with others who may be diagnosed with the rare form of cancer that I have since there is virtually nothing on the internet about my condition.

I'm 31 and I was recently diagnosed with a rare form of cancer called "clear cell sarcoma". The cancer is in my foot. I am having my left foot and lower half of my leg under the large muscle amputated on August 12, 2005. I never thought that at my young age I would ever have to face something like this so for those that think they may be too young don't let them be fooled because it fooled me.

Here is my story, I?m sorry this is so long but I wanted to share this with you.

About a year ago I started having a funny feeling in the heal of my left foot. When I would wake up or take my shoe off and put direct pressure on my heal it would have a funny twingey feeling in it. I blew it off as my imagination and never did anything about it. Around November or December of 2004 I noticed a bump forming right above my heal under my ankle going towards the arch of my foot. I knew that wasn?t supposed to be there but it wasn?t bothering me so again I didn?t do anything about it. Over the next couple of months the bump started getting bigger. I went to a general doctor in March of 05 that works upstairs from where I work and he looked it over and told me it was a benign tumor. He said not to worry about it because it wasn?t cancer and to go and see an orthopedic doctor, he gave me the name and number of one and said to go see him when I can. I didn?t have any health insurance at the time because my job doesn?t offer it so since the doctor said it wasn?t cancer and it wasn?t bothering me I would wait until my now husband and I got married and have an orthopedic doctor have a look at it when I would have health insurance. Over the next couple of months it would bother me here and there never giving me a lot of pain but would on occasion become uncomfortable. On the morning of June 19, 2005 my foot woke me up from excruciating pain just out of the blue. It hurt all day and all day the next day. I had my husband take me to our local ER and I saw the doctor, I told him how long I had this mass and that I had seen another doctor in March and he had told me it was a benign tumor. The ER doctor ordered 3 x-rays and after he looked them over he said it wasn?t a tumor he thought it was an abscess. He tells me and my husband that he would have to drain it. I was reluctant for him to do this but he said it would be better then me being in pain. He proceeds to put a syringe in the tumor and tries to aspirate it, nothing would come out so he says he needs to cut it. He cuts about a 3mm size slice in my foot and nothing comes out except some blood. The doctor at this point is scratching his head because he has no idea what it is. He discharges me with a prescription for some antibiotics, gives me the names of the clinic there at the hospital and a podiatrist that he knows and tells me that the bleeding would stop within the hour and to call those places in the morning and be seen.

The next morning I tried to get appointments with the clinic and doctor he referred me to, they wouldn?t see me for several weeks. I knew I could not wait that long to be seen, I was still in a lot of pain and my foot was still bleeding. I tried to call a few other doctors that I had looked up in the phone book and they all told me the same thing, I would not be able to get any appointments until sometime in August. My husband comes home from work later that night. I hadn?t changed the bandage because I would literally get nauseated looking at it that's how bad it looked after it was cut on, so I had my husband remove the bandage to see if the bleeding had stopped, it hadn?t. My husband tried to call the ER and they told him they would not let him speak to any doctors we would have to come back if we wanted to talk to someone. We knew if we went back we would be waiting all night again so my husband says we would just go to Johns Hopkins ER in the morning.

The morning of June 22, 2005 my husband takes me to Johns Hopkins. I get seen almost immediately. My foot at this point is still bleeding and so sore from being poked, stuck, and cut on I can?t even let the nurse practitioner put her fingers on it. She orders me to have 6 x-rays. They get the x-rays and she really can?t determine what it is but she knew it was not an abscess. She called the orthopedic doctor that was on duty and he came down looked at the x-rays and my foot and determined it was a tumor. He could not say if it was cancer or not and he referred me to his boss the head orthopedic surgeon and tumor specialist. I called her office the next day and was able to get an appointment with her on June 30, 2005. I went to see her and she looked over the tumor and my x-rays and said she thought it might be cancerous. She wanted me to have a biopsy. I had the biopsy on July 6, 2005. I got the results back from my doctor and she said it was cancer. She had told me what kind of cancer it was at that time but I didn?t remember after I had gotten off the phone with her. During our conversation she said that this kind of cancer likes to travel in the blood stream and settle in the lungs, I was frantic which is why I forgot what kind of cancer it was. She said I needed to have a CT scan of my chest and an MRI of my foot. I had the MRI and CT scan on July 14, 2005. Dr Weber called me on Friday the 15th and told me it had not gotten into my upper body and she said what kind of cancer it is. She said she needed to have me and my husband come in on July 22nd and go over what we were going to have to do next. My husband and I went to her office on the 22nd. She shows us the MRI of my foot and the tumor has spread into my tendons under my foot and formed another small tumor. She said my only form of treatment at this point is to have amputation. She said she had consulted with her team of other doctors and they feel that where the tumor is and that because this is so rare and they really aren?t sure how to treat it except with amputation that radiation and chemo would not benefit me at all and just prolong it and give the cancer a chance to spread even further. She said if I was animate about not letting her amputate then she could not guarantee she could remove all the cancer by just cutting it out and it could possibly spread into my bone and because of where the tumor is I would have too much nerve and blood vessel damage that would require me to have skin graphs and reconstruction surgery and that would not guarantee that I would ever have full use of my foot and it would never look normal again. While I?m having my amputation surgery I also have to have a sentinel node biopsy of my groin, Dr Weber said the cancer also likes to settle there, she doesn?t think it has but she wants to be 100% sure so I have to be at the hospital a couple of hours early before my surgery so they can inject a dye into my foot that glows and goes right to the sentinel node. I have to see an oncologist on Tuesday August 2, 2005 incase the sentinel node biopsy comes back cancerous to go over treatment options with the oncology doctor. Dr Weber also gave me a prescription and the number of a prosthesis doctor so when I have my surgery and I wake up I?ll have a temporary prosthesis. My husband and I go to see him on August 8, 2005. When I wake up from surgery I?ll have on the temporary and in about 6 to 8 weeks after that as long as I heal ok I?ll be fitted for the permanent one.

So that?s my story. I wanted to tell it since this is such a rare cancer, and I wanted to speak with others who may have had cancer related amputation. I have never had any kind of surgery before and to have surgery and such a traumatic kind of surgery all at the same time is very overwhelming and very emotional.

I have come to find out that because this is so rare that's why I was completely misdiagnosed by two other docotors. If anyone ever has to go through something like this go straight to a cancer specialist, don't let a doctor tell you it's nothing or something other then what you think it is like the one doctor said it was an abscess. In all likely hood I could have died. Had my foot never started hurting I would have went on like nothing was wrong thinking it was a benign mass until it was too late.

freeio · Posted: Sun Jul 31, 2005 1:18 pm Post subject: The shock of cancer diagnosis

There is no good or easy emotional response when the doctors tell you that you have cancer, and level with you concerning the treatment required, and the survival statistics. I remember I nearly passed out when the surgeon told me how much he was going to remove, and what the follow up treatments would be.

I remember waking up from surgery, being wheeled from the OR into the fishbowl, and being pleased that I had survived that much. They did a remarkably good job at pain management, and so I didn't hurt most of the time. It took months for the incision to heal enough for them to begin the radiation and chemo treatments. However, my beloved wife and my church family stuck by me through it all, and I am still here a nearly a year later.

I am sorry to hear about your cancer. This is never a good thing. Plus, the farther along the cancer gets before it is caught, the more there is to remove, and the more they take out with it. Losing a foot has to be a horrid thought. I am so very sorry.

Johns Hopkins is about as good a cancer center as there is. This is a hard road to travel, but they will do their best to get you through this.

Marty
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whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

trishpm

Try going to http://www.acor.org/mailing.html?l=s and joining one or both of the sarcoma email support lists. There's a good chance that you may find someone there with the same diagnosis.

spiritofhope · Posted: Tue Aug 16, 2005 1:12 am Post subject: Rare cancer-synovial sarcoma

Hi greyhoundgirl, Very Happy

I totally understand where you are coming from although not directly but from what my husband has edured. He was diagnosed with synovial sarcoma in Feb 04 in his groin after somewhat 8 months previously of incorrect diagosis and treatments for what the doctors thought was osteo pubis (an injury what some professional footballers get). Question

He had the orginal tumour taken out by a general surgeon who had no idea what it was so we were then fobbed off to a city hospital which carried out pathology on the mass. It turned out to be the rare and not so wonderful synovial sarcoma with a grade from 1 to 4, 4 being the highest. My husbands mass was classified as 3.9 and extremely aggressive because of course he had it sitting there for almost a year and was misdiagnosed every time. Only when it became really painful then was sought to get it removed! Anyway he had to undergo a radical excision surgery to clear all the surrounding margins from where the tumour was orginally taken out. This involved taking part of the pubis bone, muscle and connective tissue leaving a huge gaping hole right next to his doogs in his groin. So they took a muscle from his belly ( he now has a 5 pack instead of a six pack these days) and some skin tissue also from his stomach to place into the hole and form a skin graft. The wonders of modern medicine hey, they did a wonderful job. My husband was in theatre for 9 hours and let me tell you that was hell for me waiting and worrying like mad! But he came though wonderful but it was a bit of a shock to see him in the high dependency unit with heaps of machines attached to him. He is a man of high spirits and all he wanted when he came out was a beer because his mouth was so dry, heeehh! Wink

Anyway after about 6 weeks of healing he began high dose chemotherapy ifosfamide and epirubin for 5 gruelling rounds. Being 6 ft 5 inches and a tall man it was hard to see him become so weak and to loose his apetite. He generally lost 5 kilos every week after he went in for chemo then he would come home for two weeks recovery and would gain it back with my magnificent meals. We have two young boys aged 6 and 4 who were more worried about their dad loosing his hair, eyebrows and whole entire body hair. Shocked

It was a difficult transformation for them to see. But my man has huge spirits and is so positive, it would amaze the oncologist and my hubby would make him laugh every time. After the chemo we celebrated with a BBQ dinner and drinks Very Happy

then in a matter of only two weeks he began his road of 32 daily radiation treatments.

Then in the early months of 05 after having a PET scan they picked up a 20 cent peice sized mass in his lung. Crying or Very sad

So after having a needle biopsy to the area they knew it was cancer but didn't know what type because the sample was too small. So off again last July a day after my birthday he was admitted to hospital to have a lobectomy, the removal of the middle lobe from his right lung. The path results came back to say that the mass was an atypical (which is the more aggressive type than-typical) carcinoid lung tumour. So now as in next week we go to see his oncologist to find out if he needs to have any other followup treatment for this carcinoid tumour. So two extremely rare primary cancers in two years, well I would never believe it had somebody told me hey? Thank god though the synovial sarcoma hadn't metastized and spread anywhere instead we found another rare primary cancer, weird hey?

So chin up girl you can beat this thing I know it, just remain extremely positive, have faith even if you never have before, remain focused, be happy and live life and you will get through this. Laughter also is the best medicine. Laughing

Cancer changes people and you will see things in a different perspective. I lost friends who I thought would stick by us but instead they didn't know how to cope and got lost in their own materialistic lives Rolling Eyes

and I made friends who I thought would never be around but were. It is amazing!!
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Wife of husband diagnosed with synovial sarcoma 2004 and atypical carcinoid lung cancer. Live life and breathe it in, stay positive and defeat CANCER. Heal it, stay strong and keep that battle gear on and fight to WIN!!

macnabclan · New User Joined: 05 Sep 2007 Posts: 2 Location: Oregon

I read your whole post and I'm sorry you are going thru this. But you sound like a survivor with a positive attitude and that's what you need to do. My wife was diagnosed with "round cell sarcoma" 2 months ago. Her story is a lot like yours, from the "er" cutting open the tumor to no one diagnosing it. She is in her 4th week of radiation and scheduled for an operation on Oct. 8th. If you want to see her whole story she is writing a daily blog to tell her story. www.cancermonster.net
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A Tale of a War Between a Mother and a Monster

brainman

macnabclan, although you do not yet have the privilege to post links, I am making this an exception because it is a purely personal website with only the usual ads. To earn the privilege of posting hyperlink, you need to be an active member for at least one month and have posted 10 significant posts. This is number 1 for you Very Happy

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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

macnabclan · New User Joined: 05 Sep 2007 Posts: 2 Location: Oregon

I appreciate that Brainman, I wasn't aware of the rule. I only posted the link in the hope her story might help someone.
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A Tale of a War Between a Mother and a Monster

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