DFSP Friends.

Ontario48 said:

How Are You Feeling?

Hello Lone...I put a few  posts on the other thread Dermofibrosarcoma Protuberans (DFSP), I had a hard time finding some of the threads there so I first searched it in "content" and then linked from there and was able to see all the pages...go to page five (Nat our DFSP hostess helped me with that ").

I haven't read much about the immune system and cancer.  I do know in general that a strong immune system helps in the fight against cancer and many other diseases.  There was a recent study a friend found that scientists had found receptors that pin point how cancer cells speak to normal cells and infiltrate them.  The idea is to come up with something that changes the messaging to promote healthy cells to remain healthy.  Pretty cool.

In regards to mets, I've only found a couple reports of those who had mets.  The most common spot is in the lungs, this is true for most sarcomas.  Some doctors do a chest CT or MRI to screen for this.  Some to do not.  Even though the numbers are very low most of those who have mets to the lungs have the FS-DFSP variant, a higher grade malignancy.  Standard DFSP mets to the lungs is even rarer.  Looks like a lot of patients in the USA have an MRI or CT as standard routine.  My doc didn't do it (skin cancer specialist-dermatologist).  He said only for recurrence or FS variant.  I will be seeing a sarcoma specialist for my follow up and management (I rant about that on the other thread).  I will discuss this with her and get her opinion. For piece of mind I would like a chest screen as part of my baseline moving forward.  Adult soft tissue sarcomas represent 1% of all adult cancers.  DFSP is a smaller precentage within that and of those 2-5 percent get mets to the lungs.  So if they don't test them how do they know.  The cases I read they got it later in life (5 - 15 years later).  No regrowths just distal cancer in the lungs, confirmed to be DFSP.  So for me it would be nice to know if I get a clear chest screen so if something should happen down the road we have a benchmark.

Push for it, cry if you have to LOL!

Take care...Jo

Hi Jo thanks for your answer and thanks for clearing some things for me. 

My surgeon told that giving me an MRI would present a greater danger to my health than the DFSP would have for spreading. He did have x-rays of my lungs and they came back clear. In Denmark the checkup program for all cancers is 5 years, after that you're on your own. Maybe I should demand a new x-rays of the lungs in 5 years time, just to make sure.

I trying to keep busy reading about how to strengthen my immune system and what to in general to minimize the risk of ever getting cancer again. Don't know what else to do.

Btw it was me who send you a freind request nd I got one from Nat that i too get errors reviewing.

take care too.

lone

Ontario48 said:

They are always your little boys.

Grab them and hug them and kiss them.  They love it!!!  They are just being coolieo's.  Mine is in the prime of I'm too cool for mom.  But tonight, when hes' tired, his leg hurts because he bailed on a jump and he's just done!, I grab him and squeeze and he totally gives in for just that one moment.  Mom's know what that feels like...you know you rock in there world.  No words exchanged.  He's too cool.

Mom's rule the world!!!

Thanks ofcourse you're both right, i probably just have too much time on my hand while waiting for my surgeon to call or waiting to get get ready to go to work again. I have 11 metal stiches and they have to stay in for 14 days so a week more of waiting, doctors orders I can't even drive a car for 14 days.

I think the reason my said it was better with an x-ray is maybe because it is less expensive...and if I'm not confusing it with something else isn't MRI a scan of the whole body? i'm not sure but I will ask him. I had a friend who had 4 small tumors from breast cancer removed followed by chemo and radiation, she was never offered an MRI either with the same excuse of the radition thread being greater than the risk of metastation.

And like you I too give my kids lots of hugs and kisses, that is when I can catch them of course :-) 

I have read some very interesting things about alkalized food preventing cancer from spreading. It is good idea to keep eating those veggies

natmcg said:

MRIs yes very expensive.
Hi lone, I was intending to just have a little check then saw you had posted so had to respond. MRI can be done on all or specific parts of the body. They are not xrays they work from sound waves, Its quite noisy(they give you ear plugs) and you do have to stay in a tunnel device for quite a long time. Some people have to be mildly sedated as they can't handle it otherwise. I have no choice when it comes time for checking my brain tumor so I just grin and bear it. Iv been talking to my husband about the chest xray issues we have been discussing with Jo and he.seems to think that a chest xray would be ok, but that I should check with the Dr.and if it's risky then have the MRI instead Im lucky enough that a can afford it even though we are not in a private health insurance fund. ( Ill just get him to work more ovettime lol.

I have my checkup appointment booked for the 27th March. I know they will take photos and they give me copies so it makes it easier for me to notice if ant changes occur.

Jo and I had internal dissolving stitches and external ones which were taken out after 10-12 days, so I just assumed that you had similar. We call what you have staples . Any way as long as your not doing to much Im sure it will all heal wonderfully.

Oh you asked about my family. My dad came to Australia as a displaced person after WW2. He was 28 .Left all his family behind in Ukrainian( at that particular time he had lost contact with most of them). My mum arrived about 12mths later with her patents,an older sister(married with a son) and three brothers. Mum was 19. They met and married in 1951. I grow up speaking Ukrainian( and English).

Take care.
Natalie

Hello Ladies...

Just checkin in as I got an email from Jessie.  She actually lives in Toronto.  I told her about Dr. Gladdy and she made contact and she too is going to see her.  Wow, I am so happy for Jessie as she has some decisions to make for her next steps.  I sure hope Dr. G can sort through it all with her and provide a good action plan. 

I just wanted to pipe up on the chest xrays.    I was actually in the hopsital in August (2 months before my biopsy) as I was at work and was experiencing some chest pains.  Thought I was having a friggin heart attack.  In the end it wasn't my heart, all my test were fine.  BUT, I did have a chest xray and the tumor didn't register.  I believe I read a CT or MRI is what is used rather than a chest xray.  Google it again and see what comes up for diagnostic and screening. 

Sure stinks not having this stuff covered.  We are very lucky in Canada.  People complain about our healthcare system but it's there when you need it. 

Hope all is well with you ladies.  AND Nat "good on ya" for making that appointment!!

JO

Ontario48 said:

Can't find Coffey

Hi Nat, thanks for letting me know but can't see anything for Coffey.  My pages don't seem to refresh or something.  Hope all is well there.

Jo

And it was a good answer. Actually they never found any dfsp in the lump the cut out which must be because my GP cut to edge of the tumor and got it all after all :-)

This means I have 1.5 mm clear margins.

Have a great Easter everyone

/Lone

Lone111 said:

Yyyyyyyyyeeeeeesssss I finally got the answer from the pathology

And it was a good answer. Actually they never found any dfsp in the lump the cut out which must be because my GP cut to edge of the tumor and got it all after all :-)

This means I have 1.5 mm clear margins.

Have a great Easter everyone

/Lone

Hello Lone,

Very happy for you.  Big relief!!  Have a wonderful Easter.

Jo

RHC said:

Worried Wife

When I met my husband in 2001 he had a round lump on the underside of his arm -about five inches from his shoulder- that bulged out. He said it's nothing, that he has had it forever. Forward to 2006 when my husband of three years finally got the courage to tell me that something was wrong, that he had a growth in his pelvic area, (in the joint of where the top of thigh met his groin). He showed it to me and it looked like a ball inside a sheath of skin dangling four to five inches from his groin--the ball slightly smaller than a golf ball. We were living in Canada (I'm Canadian, my husband was working in Canada temporarily) and had a great gp but she had just closed her practice so we went to a new Doctor across the border in Washington State. She looked at the growth, decided to snip it off close to his body and send the mass for a biopsy. It was easy, fast, closed with a couple of stitches. The biopsy came back as a type of fibrous tissue growth, non malignant, nothing to worry about we were told except that it would probably regrow.

 

Three weeks ago my husband told me that the area had started to return. Said it started about eight months ago but he couldn't take the time off to deal with it but now it was bothering him. This time it had a dangling bit, but the base was large and we could tell that there was a mass inside. We now live in Georgia, fairly new to the area, did not know who to go see so we started at the md's office where I had been going thinking that they could advise who to see. Couldn't get in to see Dr, saw a nurse practioner. She took a look and a picture, said it was more than she could deal with and got us in to the local dermatologist's office that afternoon - to the physician's assistant there. He looked, said it was no big deal he was going to remove the dangly bit and cauterize so that my husband would no longer be uncomfortable and that he could come in the following week and he would remove the rest so that it would not come back again. First biopsy from danging bit came back A-OK. I was not OK with the PA removing anything. I felt a surgeon or the very least the actual Doctor in the office but my husband felt that the guy sounded like he knew what he was doing so he went back the following week. 

 

14 stitches and an appointment six days later to take out the stitches. The whole area is not good. We went back this past Wednesday afternoon to have his stitches removed but it soon became apparent that we weren't there to have his stitches removed. The biopsy of the main mass did not come back as expected, it showed the possibility of DFSP. He said that he was not able to remove it all, it has 'fingers' that he's not sure where they go, and that my husband needs to see a surgeon to have it removed. But we won't know for sure till the full pathology comes back and he knows a couple of surgeons in a small town that is the same distance from us as a major city with multiple health facilities. Needless to say we did not take him up on his offer of the 'good guy surgeons' in the small town. We asked him to refer us to a surgeon who worked in oncology out of a major hospital. The guy came back with a referral to a surgeon who specializes in bariatric surgeries with an appt at the end of April. Oh and when I called the following morning to find out when exactly all the biopsy pathology results would be in I was told that they were already back and it was DFSP.

 

Through making multiple calls and leaving messages for various Drs somehow I ended up being called at home by Dr Steven Attia at the Mayo Clinic. DFSP is what Dr Attia does. He organizes a conference for DFSP. While I was on the phone with this amazing man, he called a surgeon who specializes in sarcomas and between them they decided on a day that they could both see my husband. April 9.

 

My husband has not had a scan, an xray, an mri etc. He has had a biopsy result positive for DFSP. He has 14 stitches in his groin that are not healing and I'm scared to death. The wait to April 9th is very hard and I don't know what to do. 

 

Tomorrow my plan is to get a copy of the picture and send it to Dr Attia as well as all three biopsy results. I thought that I'd also send a picture of what the stitches look like now.

It sound like you have best possible doctor and I'm sure he will make sure you're husband gets the mri/x-ray needed to see it the dfsp has spread. If you read the posts in here you will see that people have lived with this cancer undiagnosed for 10 or more years without it spreading much. I had my dfsp for 4,5 years without it spreading more than about 2 cm ( ~1 inch)

Make sure the lump on his arm is also checked. But even if it is the dfsp that has spread there are medicine such as Gleevec that can help kill the cancer. I will hope for the best.

I had 11 clamps removed from my groin/hip area wednesday before easter - 15 days after surgery. I think 6 days is not enough for healing, but i doubt that healing has anything to do with dfsp. Bad healing is usually more to do wiith smoking? Or lack of vitamin that you get from good green veggies. When i had a Caesarean the clamps stayed in for almost 3 weeks, that is of course a deeper cut through layers. 

Best wishes

Lone

Thank you for responding to my post Lone and Nat. I am having a very difficult time my thoughts are going crazy.

My husband's mom died from pancreatic cancer, his dad has had both breast and colon cancer and his uncle (dad's brother) died from breast cancer--- the family owned a dry cleaning business for years and there is some question whether the breast cancer was environmental due to the now never used cleaning chemicals or because of genetics.

We have three boys, twins 10 and a 4 year old.

The thoughts/questions driving me nuts;

If he had one sarcoma on his arm for years, why did one start in his groin when they are usually one spot only?

Are they connected through his trunk somehow?

The one in his groin is next to his lympth node, there nothing to remove it from, it's not located in the meat of an arm or leg but in his joint, how are they going to get a 'clear margin' around it?

The dermatologist who attempted to remove it said it 'has fingers' and he doesn't know where or how far they go. In that area it's organs right?

If it is possible for surgery and a clear margin, is it day surgery? Radiation has been mentioned multiple times even without an mri, scan etc, what's that going to be like?

When a DFSP specialist says that it is going to be challenging, we r basically screwed right? That's what my head is telling me.

I have nothing to do but think and wait. I've got all the paperwork, faxed our lab results, registerd as a patient but we have to wait till the 9th. I'm not sleeping. I wonder how he can appear so healthy yet be in such danger.

Thank you for listening,

Helen

RHC said:

Worried Wife Going Crazy

Thank you for responding to my post Lone and Nat. I am having a very difficult time my thoughts are going crazy.

My husband's mom died from pancreatic cancer, his dad has had both breast and colon cancer and his uncle (dad's brother) died from breast cancer--- the family owned a dry cleaning business for years and there is some question whether the breast cancer was environmental due to the now never used cleaning chemicals or because of genetics.

We have three boys, twins 10 and a 4 year old.

 

The thoughts/questions driving me nuts;

If he had one sarcoma on his arm for years, why did one start in his groin when they are usually one spot only?

Are they connected through his trunk somehow?

The one in his groin is next to his lympth node, there nothing to remove it from, it's not located in the meat of an arm or leg but in his joint, how are they going to get a 'clear margin' around it?

The dermatologist who attempted to remove it said it 'has fingers' and he doesn't know where or how far they go. In that area it's organs right?

If it is possible for surgery and a clear margin, is it day surgery? Radiation has been mentioned multiple times even without an mri, scan etc, what's that going to be like?

When a DFSP specialist says that it is going to be challenging, we r basically screwed right? That's what my head is telling me.

I have nothing to do but think and wait. I've got all the paperwork, faxed our lab results, registerd as a patient but we have to wait till the 9th. I'm not sleeping. I wonder how he can appear so healthy yet be in such danger.

Thank you for listening,

Helen

Hello RHC,

I've have read lots of "cases" and test studies etc. and very very few have died from this cancer.  Those who do have had complications with it after it has spread to the lungs (after a number of recurrences and bad management) which is extremely rare.  I was very pleased to see you have a sarcoma specialist.  I truely believe this is the way to go.  Try not to jump ahead, it's hard but let the docs figure it out.  The fact that he (like all of us) are healthy, no illness, side effects etc. says a lot.  Most cancers that hide and grow produce acute side affects and typically are caught too late.  This kind of cancer can take decades to grow and even the worst cases produce wonderful results once diagnosed. 

I would guess from what you've wrote that hubby isn't a sit around and heal type of guy. Possibly the healing processes is delayed due to too much activity on his part and the location of the wound.  I would expect it's challenging to not irritate that area without being absolutely immobile for some time...and you know how guys can be  

Sounds like you are all over it, ask all the questions, keep a journal for the big day...April 9th will be here before you know it.

We are thinking of you, best wishes.

J