Clear Cell Sarcoma/Malignant Melanoma of the Soft Parts

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Clear Cell Sarcoma/Malignant Melanoma of the Soft Parts

Postby keller2k » Thu Aug 04, 2005 8:59 pm

Hi
My name is Terri. I am a 36 yo mother of 3. I found a lump on the bottom of my foot over 2 years ago. As I was pregnant, I put off doing anything. (I thought it was only a plantar's wart....) When I finally "got around" to having it looked at, I was diagnosed with Clear Cell Sarcoma/Malignant Melanoma of the Soft Parts (ccs/mmsp). I had the tumor and 2 cm margins removed (basically my whole heel) and reconstructive surgery. I had sentinal lymph node mapping, with all 8 nodes being negative for cancer cells. I am looking for anyone who has dealt with this. We went to MD Anderson, and they felt this tumor was unlikely to recur. But, when you try to research this topic, it seems like all you see is that "the prognosis is dismal....". Therefore, I would love to find someone who has dealt with this. Thanks and God Bless!
keller2k
 

Postby aimykins » Mon Dec 05, 2005 10:39 am

Hi I also have clear cell sarcoma I was diagnosed in 2000 I had surgery to excise the tumor and I had three months of radiation I too have been told by the doctors that they belive the cancer is gone but all the info I have read suggests that the cancer will most likely return. Ihave a very hard time dealing with this myself as evertime I get sick a headache a flu anything I cant help but wonder if its the cancer that has come back I would sure love to have someone to talk to about all of this. I am 32 mother of 2 in North Carolina. I have been told that the expert on CLear cell sarcoma is Dr. Paul Savage at wake forest hospital in NC I have seen him on one occasion and my doctor confers with him regularly about my case.
aimykins
 

Postby Carolyn » Wed Dec 07, 2005 7:10 am

aimykins,

I think a lot of us understand how you feel. I think a lot of us want to put our cancer experience behind us and go back to our "normal" life, but in a sense that doesn't happen. Fear of cancer recurrence is kind of with us all of the time, although it does eventually fade and become more like background noise.

It might really help you to attend a support group for at least awhile. I hadn't from the time of my diagnosis but had some issues similar to what you are feeling so did attend a group for awhile when I hit the 4 year mark. It helped me a lot. Now that there are more cancer survivors, some of the cancer organizations are starting to realize that there are emotional issues that linger for a long time. I think a lot of those issues are related to a fear of recurrence and being put back on the cancer roller coaster. Sloan-Kettering and MD Anderson are addressing those issues now, and a woman years ago started an organization called "Cancervive" for survivors of cancer who have issues they are dealing with. I also read a book "Dancing in Limbo : Making Sense of Life After Cancer" (Jossey Bass/Aha Press Series) that spoke to what many of us experience as an emotional aftermath of cancer and fear of recurrence. That book made me feel a lot less alone.

It really does get better. At least for my part, life never went back to the old normal, but the new normal is better!

Feel free to contact me. Hang in there! :-)

Carolyn
Carolyn
 

Postby lizzy » Sun Mar 19, 2006 5:23 pm

hi my name is lizzy i am 34 and have just been told i have clear cell sarcoma . a lump on my foot. very painful. is there anyone out there who can share the same experience with me
lizzy
 

Postby aimykins » Tue May 30, 2006 1:59 pm

Hi terri I would like to talk to you more about your experiences can you email me please. thanks amy 6 year clear cell sarcoma survivor
aimykins
 

Re: Clear Cell Sarcoma/Malignant Melanoma of the Soft Parts

Postby cachochina » Sat May 16, 2009 4:40 pm

Hi Josh,
How are you doing? Was any of the information I sent helpful? Have you gone back to talk with the Drs.? I am continuning to drink the special tea and trying to build my imunine system. Back in February they told me they found a "spot" just above my left ovary- if this spot was the cancer that matastisized -it was real BAD news. As you well know there is no traditional treatments and where I live they said they was NO HOPE if it had spread:( I was waiting for my PET and CAT scan results and they came back with good news :) The Drs. informed us that the spot was still there BUT it has not changed and has not grown- so that was a relief. They will still keep a close eye on it to make sure it does not change.

I have been wanting to ask anyone who has Clear Cell Sarcoma sooo many questions. If you are ok with sharing your experince with me I would appreciate it. If you do not feel comfortable writing it but would rather talk maybe we can work something out! I do not know about you but it seems since we have a rare cancer ,there is not a lot of research to pin point how WE got CCS and I would be curious to know if we have anything in common.
To answer your question-I have NEVER had a root canal
Curious- how did you find out you had this rare cancer? Did you have a spot? Was it painful? DID THE AREA SWELL UP AT ALL?

Josh, You are in our thoughts and prayers!! I hope we can chat some more soon!
Take care,
Caro
cachochina
 
Posts: 8
Joined: Sat Feb 28, 2009 7:57 am
Cancer Diagnosis: Clear Cell Sarcoma
Relationship To Patient: Self

Re: Clear Cell Sarcoma/Malignant Melanoma of the Soft Parts

Postby cachochina » Fri Aug 28, 2009 6:55 am

Hi Josh!
I have been thinking a lot about you and have been wonder how you are doing? You have been in my prayers daily. I have not recieved any messages from you since my last note back in May :( I really hope you are doing well! Hope to catch up soon!
I go for my next PET and CAT scans in a few weeks.. I am trying to stay positive but as soon as time get's closer to scan day-I gat so nervous :(

If you get a chance and would like to 'talk' I am here for you!!! I hope you have a great support system at home!!!
You are in my prayers! Take care,
Caro
cachochina
 
Posts: 8
Joined: Sat Feb 28, 2009 7:57 am
Cancer Diagnosis: Clear Cell Sarcoma
Relationship To Patient: Self

Re: Clear Cell Sarcoma/Malignant Melanoma of the Soft Parts

Postby mikeg » Mon Oct 26, 2009 10:43 am

Hello everyone. I have been recently diagnosed with Clear Cell Sarcoma. I am so tired of reading all of the negative thins online about this rare cancer. It seems that if the cancer is contained and they treat the site, with surgery it usually turns out ok if the cancer has not already traveled through the body. I am a 29 years old, married for 5.5years and the father of two newborn twin girls.........

Here is my situation (any information is appreciated)

I had a small red bump on the side of my left foot near the big toe joint for what I can remember 5 years. It never really bothered me unless I was on my feet all day and I had on new shoes or some dress shoes. I finally went told my doctor about a year ago, he first said it was a bunyon, then he thought it was gout. Finally when nothing changed, he suggested I see a Pathologist. I went to see the Pathologist who ordered an MRI which clearly showed a tumor. The MRI diagnosed it as a Giant Cell Tumor. The pathologist was 99.9% sure it was a benign tumor. My Surgery was on 10/06/2009, after the surgery the pathologist said everything went great, the tumor was laying on a tendon but overall my foot looked great inside, the tumor looked like every other benign tumor he has taken off of someones foot. So a few days went by and the pathologist said it was a rare Spindle Cell Tumor, but he wanted an experts consultaion. So my tumor was sent to the University of Michigan, who confirmed the Tumor to be Clear Cell Sarcoma. My tumors histology was in good shape from what I can read online. It was Low Grade, with no vascular invasion, lymphatic invasion or perinural invasion. There was no necrosis. The mitotic activity was variable in different areas, between 3-30. I really am not sure what all this means, but from what I have read it is all favorable for the tumor being centralized. I went to an Oncologist at Henry Ford Hospital, who saw me on 10/19/2009. He ordered x-rays of my chest which were normal and then a CT Scan of my upper body and pelvis, which was normal. He is in the process of obtaining the information from UofM so he can see the tumor himself. He seems sceptical of the initial diagnosis of Clear Cell Sarcoma. I see the Oncologist again on 11/2/2009, which I am sure he will have reviewed all the information and present me with a treatment plan. In away I hope he says this is all a big misunderstanding and the tumor was benign...lol.

My pathologist and the oncologist both have talked about taking the tendon from my toe to amputationg half of my foot. All I know is I want the cancer gone!

Any information will be greatly appreciated!

Thanks
Mike
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Posts: 3
Joined: Tue Oct 20, 2009 6:04 pm
Cancer Diagnosis: Clear Cell Sarcoma
Relationship To Patient: Self

Re: Clear Cell Sarcoma/Malignant Melanoma of the Soft Parts

Postby cachochina » Mon Oct 26, 2009 7:02 pm

Hi Mike,
First off congratulations on your twins :) I am so sorry you have had to go through so much these past 5 years or so. I truly know what you are going through. How is your recovery going? Have they checked your lymph nodes to see if it has spread?
Now...My name is Caro, I am 30 years old, married for almost 2 years to a wonderful and caring husband! I am a mother of two girls and a step mom to 2 boys and 1 girl. I do not know if you had a chance to read what I wrote back in Summer of '08 (I am not sure the exact month of 2008) I will briefly eplain my situation but you are welcome to go back and read with more details from my previous posts.

I went to my Drs. (May 2007) because I also had a lump similar to where you had your red spot, also on my left foot. I did have pain due to the tumor resting on nerves and such :) Well the PA told me it was from my shoes and sent me home. 1 year later I had to be more agressive, so after an MRI and needle biopsy I was diagnosed with Clear Cell Sarcoma. Ironically before they diagnosed it my Dr. almost guarnteed me that is was a benign tumor. Before I had surgery my left foot swelled up real bad with lot's of pain. The Docs. in the Urgent Care told me it was a bad infection or gout. (sounds similar to what they told you too) I had my surgery May 5, 2008. I know the Drs. are talking about amputaion for you. I will explain to you what was explained to me before I had my surgery. I got more then a second opinion, in fact we talked with a total of 3 Drs. before surgery. The Drs. all agreed that ampution, of most, of my left foot was NOT nessesary, As long as the tumor was completly taken out with 2cm of clear margines all around the tumor :) 1 out of the 3 did not agree in the begining but after she talked with the other DRs. came to agree with them with regards to not amputate half of my foot. My scans have always come back with NO signs of any tumors in my foot and I did NOT have an amputaion. I agree with you about just wanting the cancer gone but I felt assured that amputaion was not nessesary. In your case they almost did it backwards with sugery first then diagnoses??? so I am not sure if the Drs. feel they were not able to completly remove the tumor or did not get 2cm of clean margins???

I have had 4 PET scans since my surgery and the last two have shown some concern for me :( They are monitoring a "hot spot" abouve my left ovary. My Oncologst is somewhat concerned about this hotspot. It has not changed in size or shape but the intensity is more .. I do not exactly know what that means. We did talk with Drs. who have delt with Clear Cell at a Hopital in Boston (Dana farber) and they do not seemed to be alarmed yet- phew for now :) I will get scanned again in January. I am curious to know how you feel about it all - it seems to me like it is a "hurry up and wait" game that plays with your emotions- it stinks having a rare cancer :(

I know you see your Oncolgist on Nov. 2nd- our prayers are with you. I hope for your sake that it does in fact turn out to be a big misunderstanding and this tumor is actually benign ( I know I though that same way too) Our advice when you do have Drs, appointments is.. TAKE SOME ONE WITH YOU TO ALL OF YOUR APPOINTMENTS!!! I know we don't retain all of what is told during these visits,especially under these stressful times!! My husband has been to all of my appointments and I was so glad to have him- we both would remember curtain info. that was given and together we seemed to get the whole picture :)

In terms of treatments and Drs. plans for you, we would be very curious what your Drs. tell you verses what the Drs. have me on. I will tell you what plan were given to me... My Dr. says I will have a PET and CAT scan every 3-6 months for years then eventualy ,IF all is good, the scans will go farther appart and eventualy be once a year. The results usualy take a week, at least with my Dr. That week is soooooo nerve racking :( ALSO very Important- IF you do end up getting PET scans they will advise you (along with resaerch ) that you will recieve a radio active dye.. You WILL BE radioactive for at least 3 hours after that. It is BEST to stay away from pregnant and or nursing woman and children!!! This radiation can cause mutations in unborn to newborn children :( It scared me enough that on days I have my PET scans.. I always have a friend or family member take care of my girls for the WHOLE day! I do NOT want to mess with mutaions and what nots :( The whole procesure for PET scans takes 2 hours or more :( then You are radio active for 3 hours after that :( I was told by more then 3 Drs. that radiation nor chemo work for our kind of cancer and after A LOT of research (thanks to my husband) those things cause more damage then anything else and is very bad. What we have learned is that if this cancer spreads there is NOTHING they can do in the USA.. but through more research my husband found hospitals in Germany that perform alternative cancer treatments. In Boston, there is another hospital (Dana Farber) who is currently doing experimental treatment called ARQ 197 ,on Clear Cell. So if the Drs. here give you no hope- there is still HOPE out there :)

I hope I have not overwhelmed you or scared you off. Since my diagnoses I have been wanting to talk with anyone who has had Clear Cell Sarcoma especially since it is so rare. I have so many questions and thoughts that I would like to run by you, if you would like to. For example did you by any chance have warts on your left foot? Does anyone in your family have cancer? So many more questions like that. If you would be willing I would be so happy to talk about our cancer and possibilities of "why me/us".

Best of luck with your upcoming appointment- You are now in my families prayers!!!
Sincerly,
Caro
cachochina
 
Posts: 8
Joined: Sat Feb 28, 2009 7:57 am
Cancer Diagnosis: Clear Cell Sarcoma
Relationship To Patient: Self

Re: Clear Cell Sarcoma/Malignant Melanoma of the Soft Parts

Postby mikeg » Tue Oct 27, 2009 7:31 am

Caro

Congrats on your family and thanks for all of the information. It seems that we do have a similiar situation. Have read the case report online about the female who was diagnosed with clear cell sarcoma on her ankle? The report has pictures and a pretty good breakdown of ther situation. I think it relates to us. She was treated at MD Anderson. They also did not amputate. I have read several other case reports and it seems that if the cancer comes back, that is when the prognosis turns down hill. So I just want to make sure they get it all out of me.

Almost exactly the same situation. But I did not seek any doctor treatment for 5 yeaers. That was probably not to smart on my half. I think mine would change size from time to time. The only spot that really hurt was a callis that was forming. Other than that it would only hurt if I had new shoes or tight dress shoes on. I am sure the Oncologist will want to go back into my foot and make sure the tumor is comletely gone. The Podiatrist is confident that he got it all. The Tumor was laying on the tendon that connects my big toe to my foot, the Podiatrist just slid his finger underneath it and it slid right off. He said it looked like everyother benign tumor. The more I read about this stuff is that it does look like a benign fatty tumor.

Did you have a PET scan at diagnosis? My Oncologist said that it does not seem to be helpful in Sarcomas? The Oncologist had Chest X-Rays and CT Scans of my trunk and pelivs which all returned normal. I think the Oncologist believes it is Atypical Synovial Sarcoma? Which seems a little better. But I have read Path. Report and it tested positive for HMB-45 which seems to correlate directly with CCS. Do you have your initial Path. Report? I would like to compare them, to see the similarities.

I am sorry about the results of your PET Scan. Even if it is nothing, the stress alone is terrible. When I was waiting on my CT Scan, I was miserable, my family as miserable. But we did get a positive, which is a step in the right direction.

I love taling with people that have CCS. I am not sure if you have located the girl in Florida that has been diagnosed, her webpage is Shredoutcancer.org. She found a tumor in her shoulder.

Run all your thoughts by me. I want to do the same. I did have warts on my foot, only one person in my family has had cancer, it is my uncle on my dads side. He was diagnosed with Testicular Cancer and it is in remission. Did you have any trauma to your foot? I almost positive I hurt my toe playing flag football, I thought it was turf toe....and then it morphed into this?? I have read in a few reports that trauma might be the initial cause. I would really like to know what your Path. Report reads. I think that would be a good start to comparing our tumor. Did yours swell depending on what food you ate?

Send me any questions that you have. Are we allowed to give out email address' on this site? Or phone numbers? It might be easier to conversate over phone rather than email......let me know!

Thanks for all your info. You are in my prayers.

Mike
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Posts: 3
Joined: Tue Oct 20, 2009 6:04 pm
Cancer Diagnosis: Clear Cell Sarcoma
Relationship To Patient: Self

Re: Clear Cell Sarcoma/Malignant Melanoma of the Soft Parts

Postby cachochina » Tue Oct 27, 2009 9:21 am

Hi Mike,
Thank you so much for writing back! I am very excited that I did find someone who is willing to talk about CCS with me, thank you! I know I have chatted with people in a more private page (she set it up so I do not know how to do so) But I think you are right I would rather talk over the phone or something, if you are ok with that! I have also chatted with someone else via my regular e-mail (again he set that up so I do not kow how). Maybe we can ask the lady who set this web site up and see how to safely exchange info. I know it was written somewhere in this forum to be careful what we write and to be"safe".

I am not sure whose case report you read about a woman who had it on her ankle.. I have read all who have CCS, on this forum but have never seen pictures.. I would like to know who you are talking about so I can read and see pictures as well, if you don't mind pointing in the right direction :) The one you said we might relate too. Also thanks for the website site about the woman form Florida- I will be very interested in reading about her case. thanks for shareing her case.

I have kept most of my reports unfortunatly I do not know if I have ALL of them just because I did not understand all that was going on nad the Drs. did not always give them to me :( I WILL look for my original path. reports.. What is the easiest way to compare these reports because I would like to see/ read your as well??

Don't beat yourself up for not going to the Drs. for 5 years just be happy you did go and found the tumor :) What size was your tumor when they did remove it? Do you think they were as careful removing your tumor as they should have been. Just becuase it sounded like they just thought it was a fatty tissue or something like that.

Thank you for your sympathy on the whole waiting part of things :( Yes, it makes for miserable times :( I am sorry you had to go through the stress and pains while waiting for your CT results too. I know that is very stressfull on you and your family :( I wish the Drs. would understand how difficult waiting for reports truly is!! :( Maybe then they can do something to change that!

You mentioned you thought the pathologst would want to go back into your foot to make sure they completly got it all out BUT I was under the impression that was the whole reason for the PET or CAT scan so they can view your inside, if you will, and see if there is any activity in or around the original site of where you had your tumor?!?!? Why would they have to go back in and risk casuing more damage unless they are sure there is something there?

I had PET scans AFTER diagnoses and just before surgery. My oncologist did not say the same as yours?? I wonder why they differ so much? My oncologist did say that after years of having GOOD scans without any changes then they would switch to just CT scans of the trunk and pelvis area and also Chest x-rays.. but for now she felt that PET scans are fairly new to be used but very helpful for sarcomas. i ma very interested in why our oncologist differ?!?! any thoughts? Has your Oncologist had anyone with Clear Cell Sarcoma before? Mine has not- I am her 1st but she is continuely talking with other oncologist who have delt with CCS. and we continue to talk with 3 different hospitals who have DRs. who have delt with a fare amount of patients with CCS.. so between them all , I feel like we are all coming to a good understanding. My Oncologist seems to er on the more safer side of things. She i sthe one out 3 Drs. that said we should amputate but after she talked with colligues and the other 2 Drs. we talked with she did say it would be ok with out amputaion.

I am a little confused.. Have they diffinatly confirmed that your tumor was Clear cell sarcoma or are they still looking into it? Sounds like the pathologist maight think it is Atypical Synovial Sarcoma? i do not anything about that. I know, just because I was there mayself, that you wish it was really not CCS but rathyer something else binign :) I pray for your sake that is a huge misunderstanding an din fact you did not have CCS. I do not know what HMB-45 is from your reports and I am not sure how that connects with CCS. I will have to find my reports and see if that is in them!

I sorry about your uncle having had cancer but happy that he is in remisson! No imediate family members have had cancer in my family. My grandfather's brother or sister had stomach cancer but I do not think anyone else has had it?? Interesting that you also had warts on your left foot! As digusting as it is to talk about it, I want to get to the bottom of things so I hope you do not get diguted ... I had a huge wart on my left foot just under the big toe then I had over 10 smaller warts on the same foot. I know they are caused by virus' that might lead to possibly cancer, who knows?! any thoughts on that? I had all of those warts for a t least a year. I would try and get them frozen but it just was not enough so my Primary sent me to the poditrist and he was able to do something that finally "cured" them:) But I have along with my husband, wondered if those warts had anything to do with the cancer?!?
Yes, I agree with you too about having trauma to the area could be the initial cause.. Sorry to hear about your injury to your foot from flag football. Did you break anything? Or what exactly did you do to injur it? Yes, I did have trauma to my left foot as well, ironicly about the time I could have developed this cancer. While I was a Certified Nurses assistant working at a nursing Home one of my residents ran over my foot with his wheelchair :(
I had some pain for a while and I think it got red not sure if it selled up or anything else.

Thanks for willing to bounce thoughts, ?'s and or ideas with you- please do the same!! I really hope we can talk over the phone or something- It would make it so much easier!! Here I go with some ?'s I have so many... What size was your tumor when they removed it? Did they do a prosedure( I forgot the name of it) but they inject a special dye near the tumor site then have it shoot up your leg and wait for it to pool somewhere in the lymph nodes, then with special equipment they were able to mark that spot (usualy in the groin area) They did this with me just before surgery- so they did both procedures while I was under on top of many more procedures. But anyways what they did was after they removed that lymph node (where that special dye poooled) they were able to test it for cancer and lucikly mine was good :) Did they do this with you? I think it was a way to see if my cancer had spread. Have you recoverd from your surgery? In your family are there any cousins who have married and have kids? Any diabetes in the fam? Or highblood pressure? or have you ever had Bellspulsy?? Where are you or your parents from (heritage?) My parents are from Chile,South America but I was born in the USA. Have you had any wierd craving wether it be food or smells or anything?? I do. Before or after your diagnoses did you notice anything else wierd about your body, any changes? For example I have had many issues come up like now I have Intersistial Systityus(spelling?), Pubic Symphysitus (spelling?) basicly I have a lot of swellings in other parts of my body, wierd-never had this before ever in my life. Do you have any swelling anywhere? How was your health as a kid, teenager? Where you always healthy or sick alot? I was always healthy hardly ever sick grwoing up.
What makes me mad is that I have never smoked, nor do I drink any alchol I actually only drink water (rarely juices) I have always just drank water,never smoked nor drank. I have always eaten healthy. WHY ME for cancer especially rare??? I take some of that back, there was a time of about 2 years or so when I was under a lot of stress and I did not eat as well as I usualy have( Ironicly about the time I must have had my cancer). Were you under a lot of stress around the time of the cancer?

Well I have to go now sorry if I have overwhelmed you with so many ?'s- I actualy have more but thought this was a great start.. do you have thoughts or ?'s. PLease feel free to ask! I really hope we can talk over the phone or something It would be so much easier!!!

Hope you have a good day and thanks again for willing to talk with me!!
Take care,
Caro
cachochina
 
Posts: 8
Joined: Sat Feb 28, 2009 7:57 am
Cancer Diagnosis: Clear Cell Sarcoma
Relationship To Patient: Self

Re: Clear Cell Sarcoma/Malignant Melanoma of the Soft Parts

Postby mikeg » Wed Oct 28, 2009 8:58 am

Hello
Yes I think chatting over the phone or email would be better, I have no problem emailing you my Path report. How do we get in contact with the person that can set this up???

This is the link for the CCS on the ladys foot....http://faoj.wordpress.com/2008/03/01/cl ... oft-parts/

If for some reason it does not load, just google "Clear Cell Sarcoma Foot" It should be the first link that pops up.

It seems like every report that I read talks about Reoccurance, it seems that if this stuff comes back it is pretty bad.

The Oncologist measured it at 4cm on my MRI but when they took it out it was about 6.5cm and it was in 2 pieces. I have read that size of the tumor plays a huge role in prognosis, I have read that if the tumor is over 5cm it usually has spread of will spread. So I am a little concerned about the size of mine. But I am optomistic because my CT Scan was normal. I would assume that if the cells have been in my body for over 5 years I would have issues somewhere else in my body by now, but you never know. My Podiatrist is confident that he removed all of the tumor.

I am sure once my Oncologist gathers all of the information and views the Tumor, he will have a plan and an outlook for me. I am going to request a PET Scan and a Lymphnode biospy, it seems that these are very important. How has your insurance company been with the treatment and tests???? My oncologist did say that he has treated someone with Clear Cell but he said it usually occurs underneath the nail on the foot, which caught me by surprise because all of the reports that I read, mine fits the bill pretty well. It seems that this is so rare, not many people really know how to handle it. I do see the Oncologist on Monday and I am going in there with a bunch of questions.....I dont like talking to the doctors though, it seems like they answer in the politically correct answer and I just want to know what he is thinking, not what the books say....Who knows!

I have had two pathologists confirm it as Clear Cells Sarcoma, so I am pretty confident that it is. My Oncologist just wants to see everything himself so he can diagnosis it.

I did have warts on my big toe when I was younger, it never seemed to be an issue....i think I had one??? But I was young. I did not break anything when I hurt my toe, I just tweaked it. That is when I first noticed something, so I wonder if maybe the scar tissue from the injury morphed into this stuff or was it always there and I finally noticed it with that small injury..

I have not noticed anything different about my body since I have had this bump. I feel completely normal. I have always stayed in pretty good shape, I played College Baseball and since then I work out on a regular basis. I dont do much cardio, but I am in the gym about 3-4 times a week. It is driving my nuts now not being able to go to the gym becuase of this surgery. The doc still has me off my feet and on crutches.

I have never smoke cigarrettes, I do smoke a cigar from time to time. I do have a drink from time to time as well. I think this cancer is completely random, that is what is scary. My wife said couldnt you have used these odds to win the lottery and not get this crazy cancer.....it just seems so sureal. I dont like thinkig of myself as a cancer patient.,,it really ways on my mind.....

I never get sick, maybe once a year and that is just a cold. I cant remember the last time I had the flu???? My Grandfather had diabetes and my dad has high blood pressure and cholesterol. I do have Hypothyrodism, I take medication for that everyday, I found this about 5 years ago as well, but I know i had the bump before I started taking my medicine.

Where do you live now? We live in Michigan, just outside of Detroit. I am pretty sure I am German and Polish, but my ancestors have been in the states for many generations.

Feel free to send me any questions you ahve, I like talking about it....

Mike
mikeg
 
Posts: 3
Joined: Tue Oct 20, 2009 6:04 pm
Cancer Diagnosis: Clear Cell Sarcoma
Relationship To Patient: Self

Re: Clear Cell Sarcoma/Malignant Melanoma of the Soft Parts

Postby cachochina » Thu Oct 29, 2009 6:58 pm

Hi Mike,
I did read your e-mail briefly and will respond but wanted to makes sure you at least have the name for the procedure that was done for me about the lymph node biopsy.. it is called a sentinal node biopsy- not sure about the spelling. Either your Oncologst is way ahead of mine or behind in terms of a plan. Hope you will be able to get PET scans and be watch very carefully

I have been looking all over to try and contact Sharon- I believe she is the one who put this great forum site together! I have not had luck before- i do not know how to give my phone number or e-mail safely.. if you have any ideas we can try. It would be nice to be abel to talk before your appointment this coming Monday! I will continue looking all over this forum how to contach her.

I will respond to your last note within these next days!
Hope we can contact each other soon.
Take care, Caro
cachochina
 
Posts: 8
Joined: Sat Feb 28, 2009 7:57 am
Cancer Diagnosis: Clear Cell Sarcoma
Relationship To Patient: Self

Re: Clear Cell Sarcoma/Malignant Melanoma of the Soft Parts

Postby cachochina » Thu Oct 29, 2009 7:04 pm

Hi Mike (again:)
I just finished writing a note to Sharon asking her how we could exchange e-mails and or phone numbers- so I guess I will just wait to hear form her!
Carolina
cachochina
 
Posts: 8
Joined: Sat Feb 28, 2009 7:57 am
Cancer Diagnosis: Clear Cell Sarcoma
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