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DFSP Friends.

natmcg
Posts: 119
Joined: Jun 2012

Hi I have started this new heading so that anyone who is dealing with.DFSP at the moment can contact other people in the same position without having to scroll through all the old entries. Please don't get me wrong the older entries have valuable information and are always worth reading if you find out you have this rear cancer. This is just my attempt at bringing current members together faster.
Natalie.

Lone111
Posts: 32
Joined: Mar 2013

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
Posts: 119
Joined: Jun 2012

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

Ontario48
Posts: 55
Joined: Jan 2013

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

Lone111
Posts: 32
Joined: Mar 2013

Great that Jessie made contact and that you were able to help get in contact with a good doc in Toronto.

In Denmark healthcare is free for everyone - we do however pay the higest taxes in all of the world for this. However i looked up what a MR scanning cost in a private hospital and it is like 500 us dollars for a scanning of the abdomin. I might go get one after my surgeon calls...

Nat are you going to regular checkups for your brain tumor? how did you find out? Have you had a biopsy? That must have caused a lot of scare being diagnosed with a brain tumor.

 

Take care

lone

natmcg
Posts: 119
Joined: Jun 2012

Jo & Lone, nice to know Jessie is going to get some answers to her concerns. It's funny I touched base with a few other Aussies that have had DFSP over the last 6mths, but strangely I have had more contact with people from other parts of the world. Who would have thought that having a form of.cancer would lead me to 1.learning to use the internet on my phone( I have never bothered much with our home computer). 2. Learning more about DFSP than I.every imagined. 3. Made friends with such caring people. Now back to the heading "Check up" Yes I do have regular MRIs,but since the tumor hasn't changed in three yrs the neurosurgeon said I could leave it for 2yrs.( unless I notice any of the things he mentioned could happen of.it starts to grow). I was having a.CT scan for a totaly unrelated issue when the tumor was disscovered I had never had any symptoms to indicate it was there. I couldn't have a biopsy as it is located at the very top of my cerebellum and the location also makes it virtually inoperable. But it has been identified through scans as a meningioma. These type of brain tumors are not uncomen and only cause problems if the continue to grow. As we have no idea how long I've had it or when and why it stopped growing,all.I can do is avoid anything the might cause it to start growing. As I no longer water ski,snow ski, or go to amusement parks I reason that any sudden trauma to my head will be out of my control. So there you have it. Just as I was.coming up to the 2yrs all clear for that ordeal, when I found out about the DFSP. And now Im on another round-about of checkups. But that's OK Im here and reasonablly healthy. And when I count my blessings of which I have many. :-) life is pretty dam good. Hey Jo Coffey has chimed in again on the other thread. Bye ladies for now anyway. Nat.

o

Ontario48
Posts: 55
Joined: Jan 2013

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

Lone111
Posts: 32
Joined: Mar 2013

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

natmcg
Posts: 119
Joined: Jun 2012

Best news, sooo happy for you Lone,
Now you can relax and enjoy Easter with your family.
I have my 6mths checks up(a bit overdue) on the 3rd. I will probably discuss having a scan on my chest just so we have a reference should.I need it in the future.

Happy Easter Everyone :-)
Nat.

Ontario48
Posts: 55
Joined: Jan 2013

Hello Lone,

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

Jo

RHC
Posts: 3
Joined: Mar 2013

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.

Lone111
Posts: 32
Joined: Mar 2013

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

natmcg
Posts: 119
Joined: Jun 2012

Hi worried wife, You have come to the right place for support and understanding. And you now have the best possible Drs looking after your husband. This rare cancer presents itself in so many different ways and it always resembles someother type of skin disorder, so it is no wonder it is misdiagnosed so often(actually I have not read one story where it has been diagnosed on the first occasion) . As I was reading you post I was thinking OMG this Man needs to get to a DFSP specialist or sarcoma specialist ASAP. Then I came to the ending and sighed a sigh of relief Feewww. Waiting is always the hardest part but nothing is going to change in the mean time and you are going to see the best people for this type of cancer. In regards to the wound not healing.....has the.wound been checked for infection? I was given a script for antibiotics and told to get them if my wound stated to get red around the edges or weepy. But with me the issue was I have become allergic to any kind of adhesive tape for wound dressing(even the hypoallergenic type) I never had this problem before so after my first excision when the area became red and itchy I assumed it was normal but then noticed that the redness and itching was radiating out to where I had been taped. This was also hindering the healing of the wound. So after my nxt surgery (Mohs to achieve clear margins) I made sure the wound only came in contact with sterile 100% cotton. Ok so this may not be of any concern to your husband but I just thought it was worth mentioning. As Lone mentioned there are lots of reasons why wounds heal differently. I havnt gone into the details of my DFSP ( if you want the details are accessible just click on my csn name or read through past posts there are two other DFSP threads here as well) but I was told for over 10yrs ago that I had a harmless little growth fatty tissue nothing to worry about ..yer sure!!!! Then last yr turned out to be DFSP. Lucky for me it's a slow growing cancer. Now Im all clear again..( for the time being anyway-)
Stay positive and good luck, pop in and let us know how hubby is doing and Thankyou for sharing I alway think that we are helping others if we make people aware of how this cancer can appear in so many different ways. Natalie

RHC
Posts: 3
Joined: Mar 2013

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

natmcg
Posts: 119
Joined: Jun 2012

Hi, that's what I have learnt to do when things are crazy. This period of waiting is really the worst time in the process of ridding your husband of this cancer. I dearly wish I could answer all your questions. But your husband's DFSP has presented its in a way I have not read or head about. Has the lump on his arm been confirmed as DFSP? Or just the area in the groin? Gee I'm racking my brain here trying to see what I can help you with. Ok well Im just a DFSP survivor so Im not going to even try to explain stuff I don't understand. I'm regards to removing all the fingers(roots) to achieve clear margins I had Mohs surgery which means they cut a peice out after estimating have much area will need to be removed. This peice is frozen and pathology is done to determine if more skin, fat,muscle or bone need to be removed. in my case I had skin and fat tissue down to the muscle removed.
This is repeated until clear margins are achieved and is usually a day surgery. If they expect that a large amount will be removed then they may choose the other option which is wide excision. There are stories on another thread for DFSP of people who have had this on their head(including the face ) and the Drs have been able to do all sorts of wonderfully things to achieve clear margins and reconstruct the area. I'm sur once you talk to your team of drs net week it will all make more since. DFSP is not hereditary. It's just bad luck from what Iv read it can not be predicted. Children get it and there is no history DFSP in their families. So there is also no reason to think your children are at risk of getting it. Your not screwed!. Yes it may be a challenge,but they haven't said its not doable. You have done everything you can for now,and until your husband has talked to the specialists there isn't much else you can do . Unless you want.to ring them and see if tests can be organized before your appointment.
Try and keep busy, the time will pass quicker

Nat.

Ontario48
Posts: 55
Joined: Jan 2013

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

RHC
Posts: 3
Joined: Mar 2013

 

Thank you for taking time to reply to my fearful rant. I flutter between being ok and crying - not in front of my husband. He's afraid too but we only talk about it at certain times.  Today so far I'm good. I guess what keeps it in our face is the mess of the incision site where the dermatologist 'removed' it. As of last night 3 of the eight outside stitches are in place, it's gaping more everyday, there is redness spreading out and the idiot who did it is on vacation this week and regardless did not want to see my husband again anyway. Who do we see? I don't know if things will be ok to our April 9 appointment. There were fourteen stitches some on the inside and I worry about the ones I can't see. No bleeding though which is good. I guess I'll try to get him in to the nurse practioner today so that he can at least be looked at somewhere, he might need more antibiotics, and stitches.

From what I've read I understand that DFSP is highly treatable, and has a very low mortality rate but I also read qualifiers that say depending on the site, or location. I;m assuming that that refers to the lungs but I also can't tell you how -I dont want to say excited- eager our DFSP Dr is to have hubby as a patient because of the location, husband says that the Dr should be paying him for the opportunity! Smile

It's wait and see, very hard to do. Kids are on spring break but we can't do anything so time's passing very slow.

 

Thank you again for sharing your experience  and knowledge, and for grounding while things are spinning out of control,

Helen

natmcg
Posts: 119
Joined: Jun 2012

Hi everyone I finally went for my 6mth check. ( it's actually been 8mths since my final surgery) As I expected the Dr is really happy with my scar and surrounding area I do have a bit of an indent but that's due to the fat tissue being removed and in time it will probably even out. He has actually got a new Dr.joining his practice and it was great to meet him and talk to him today.This new Dr has been researching and updating information on DFSP as well as dealing with DFSP at a hospital in England. He will be publishing his findings later this yr. Dr Saleem Loghdey.he is a specialist dermatologist and Mohs surgon . I asked them why is it that some people with DFSP are treated by dermatologists and others are referred to sarcoma specialist. They both agreed that if they were your run of the mill dermos they would not attempt dealing with DFSP(although some do) but as my dermo has studied Mohs, oncology, and pathology(in the USA) he would see no reason for me to go else where and now with his new partner I feel I'm going to the best informed Drs. As well I have been comfortable from the very start with my Dr he was very calming and reassuring when I was first diagnosed and sent to see him.

He commented today on how relaxed I was. Maybe because on our first meeting I was a complete basket case...I had CANCER I had just gotten the all clear for another health issue and then I scared myself silly by Googleing way to much.

My lymph nodes on neck, under arms&groin were checked today...all ok.and the Drs don't see any reason for more scans or test at this point. Just 6mthly checkups until I get to the 5yr mark. Then it will be up to me if I want to come back or monitor my own checks. So I'm a happy chappy today.:-) Time to celebrate...hmm ..anyone care for glass of wine.! ;-)

Ontario48
Posts: 55
Joined: Jan 2013

Hey Nat, happy to read your good news.  This is excellent!!  Cheers to you and I don't mind to sip a bit of wine to celebrate (it's my dinner time too LOL).  Great the docs are versed and experienced.  You have a good team.  You know we are always here to support you as our little group grows.  You've been a great support to me.

Cheers, Jo XO

 

natmcg
Posts: 119
Joined: Jun 2012

Hang in there Helen, your doing great. You and your hubby are now one day closer to that appointment. If you were here with me you'd be two days closer. Its Thursday here in Australia .lol. That wound is being a bit troublesome.!! :-(( I hope your nurse practitioner (or someone) is able to attend to it. It must be hard for your husband to immobilize that area and bandaging would be difficult also. I see that Jo has posted, stay close to her she has a real nack of being able to deceiver the info out there on the internet. I have to admit I have become a bit lazy in that regard I find it much easier to let her do the searches and once she has a grasp on it she relays it here. And she sticks to the bare facts with out all the medical jargon thrown in. Jo is a real gem. (Don't tell her I said that) lol. Thinking of you & and sending good thoughts Nat.

Lone111
Posts: 32
Joined: Mar 2013

and Helen in regards to the tumor in the arm. Fat tissue tumors are very common and no indication that it should be anything but a fat tumor.

I wil hope for the best possible result for you and husband.

- Lone

Lone111
Posts: 32
Joined: Mar 2013

Great news Nat. First checkup completed to satisfaction and it sound like you now have 2 great doctors to follow your checkups. Yes I'll have a glass of wine to celebrate:-)

/lone

Ontario48
Posts: 55
Joined: Jan 2013

Cheers Lone!  So when are we heading to Denmark?

 

; )  Jo

Lone111
Posts: 32
Joined: Mar 2013

Sun is shining -  temperature just above 0 celsius, soon daffodils will be blooming - Are you picking up Nat on the way?

I'm back at work and my DFSP seems so far away - it is amazing how fast things changes - not even a month ago I was planning my funaral and now I'm planning summerholiday - latter being much more fun.

Everybody keeps asking if I'm really doing ok - mentally - I think I am. Did any of you have any late reactions? I think I have such a strong and overwhelming first reaction I hope I'm done with it...

Jo and Nat you are doing amazing things in here :-) and probably elsewhere too I just can't see that :-)

/lone

natmcg
Posts: 119
Joined: Jun 2012

Hi lone

Your warming up(so is Jo) and my days are getting shorter and cooler,and its been raining. But thats ok because Im on the coast and it doesn't snow here. Great to hear you life is getting back to normal. It certainly is a strange cancer we all had. "Here today gone tomorrow" and our recovery is quite different from other cancers.....no chemo sickness .....no radiation side effects....just scars. Yes there are some people with this that do need way more surgery than we did and some have to live with disfiguring scars and some need to take medications or have radiation to stop or slow down the DFSP spreading. But we have been very lucky ,we still have that bit of uncertainty wether it will come back, but compared to others we have been blessed.

. I still remember how scared I was six mths ago yet I feel so at ease now, I think mostly because I have all the facts about DFSP. And Im confident that I fall into that very unlikely to reoccurre % that Jo has written about. This discussion board is wonderful. Here we are from all around the world yet we have a very major thing in our lives in common, and we can share information, expriences and support each other. When I read new posts it's like Im going through it myself again and I just want to hug that person(or their carer) and say it's going to be ok. I suppose in time we may not visit here as often, but I'd like to think that we will check in to see what's going on. If I hadn't had any responses when I logded on I probably wouldn't be still posting today. Those people truely understood how alone I felt and that helped a lot in those early days.

One in a million thats us. ;-)
Nat.

PS, There are two other new posts on the other thread. Saywhaat. And mykidisthebest is their CSN names I think. Bit tricky to find page 5&6 I think. Bye.

Ontario48
Posts: 55
Joined: Jan 2013

Hey Lone,

I am one of those take charge and run kind of types.  With this I did that.  Had a few bad days but really no tears for me.  So once I got the all clear it was a flood gate.  Took the day off work and cried a river with my best buddy.  Thinking that was the end of it.  Then about a month later I had a "delayed" reaction.  I had about two weeks of anxiety.  Wouldn't go out.  Didn't answer the phone.  Couldn't keep my business meetings.  I couldn't breath, felt like throwing up all the time and had heart palpatations and brutal headaches.  Thought OMG, I'm losing it.  The phone rang and I'd sweat and get the shakes.  Luckily for me we had lots of snow days (I travel a distance to work so had to work from home those days) so I got throught it without anyone knowing what was going on (pride). 

It's crazy stuff.  Nothing I could have predicted.  I still have moments but all in all I think I am past the worst of it.  TTL (Thank the Lord).  Hoping my holiday away in Cuba, lying on the beach doing nothing with my best buddy will bring me back to my normal. That and also having the follow up with my STS doc.  The key is to not let lingering things bother you.  Clear up all the unknowns and move forward.  I see my next appointment as a milestone.  For me information is key...I don't like lose ends in anything I do.

So Lone, no matter what comes your way, ride the wave and work through it.  That's the only advise I have.  I suspect it's different for everyone.  Hold on to the positive things and the things that make you happy.

GOLF is just around the corner for me.  Can't wait to get back at that!!  I love the spring and summer.  Best time of the year.

Cheers for now...Jo

natmcg
Posts: 119
Joined: Jun 2012

SOME PEOPLE REALLY ANNOY ME.
Why would anyone think we want to read their dam adds
Iv flagged it. So if you can't see the add then csn has alredy removed it

Lone111
Posts: 32
Joined: Mar 2013

thanks for sharing again - saved by the snow. I am glad to hear your are over it again and i guess there is no way of knowing if something like that will hit before it does.

Nat: thanks for the alert.

Helen: i hope you can find time to give us an update oneof these days -  i have been thinking of you and your husband and I hope you get some good news today or at least some answers that will help you.

 

My father was admitted to the hospital friday and died today. He was old 79 and demented and had been waiting for dead for some years now so it wasn't/isn't really sad. He retired 20 years ago and on that day he sat down in a chair in front of the television and haven't moved for 20 years. He never ate fish, never ate a vegetable or anything else healthy for that matter. I use to think of him and think that since i have half of his genes i can't possible ever get any illness like cancer or anything since he can live like that and not get sick..Well he got sick with diabedes and dementia these last couple of years And I got cancer. Sorry I always think a lot about things, trying to make sense of them. 

have a nice day everyone

lone

natmcg
Posts: 119
Joined: Jun 2012

lone, Im sorry to hear of your dad's passing.:-(

My dad died when I was 29 he was only 65 and had been sick wth multiple myeloma( cancer) for 2yrs. So we we're preparied ( kind of). But it is always a great loss, and you will have good and bad days until the grieving process has taken its course.

My heartfelt sympathy to you and your family. Dealing with death in ways is similar to dealings with illnesses( cancer) we all have different time frames of emotions in these situations but eventually we get over it and.on with our lives. And you don't need to apologize about sharing your feelings....we have supported each other through DFSP and I feel are now friends, you have shown concern for my different health & family issues(my brother for one) and I understand if you want or need to share with us here. Please don't forget to take care of yourself, you are still recovering /healing
from your DFSP ordeal.

Thinking of you at this difficult and sad.time
Natalie.

Lone111
Posts: 32
Joined: Mar 2013

Hi Nat - thanks for your words and thoughts. And I am sorry to hear that you lost your dad when you were that young. My father had dementia very bad and did not who i was for many years so he has been gone a long time.

I feel so bad today. I found a lump behind my ear. And I am so afraid again. I can't eat I can't anything and I am such a mess. And I am afrad to tell my husband why I am such a mess again. I can't keep doing this. I have an app with a GP on monday. It is probably just a.... What's behind the ear? I don't know :-(

/Lone

 

Lone111
Posts: 32
Joined: Mar 2013

Lymph nodes. I goggled lymph node and there are actually two located behind the ears and I have been having a soar throad these past couple of days. So sorry - I guess I am not that over it as I think I am. Earlier to day I was telling a colleage how DFSP allready seemed so far away for me - i was totally over it - i thought.

I am still a bit worried and I feel a bit silly - and I think I'll keep my doctors appointment on monday

I hope you and yours are all well

br lone

natmcg
Posts: 119
Joined: Jun 2012

Hello again,

Your behaving totally normally for someone who has just had a cancerous growth removed. And early detection is always best. Keeping the app is a good idea after what we have been through we can never be to.carefull. but as my Dr said to me when I paniced and thought a simple mole under my ear lobe was.DFSP. CONTROLLED paranoia is ok, and you were reasonablely controled.
Also at my checkup.he checked the lymph nodes in my groin,under my arms and on my neck.

Lymph nodes can become swollen and sore for many reasons, but if they turn hard or don't return to normal size then it's always a good move to see a.Dr.

Have a nice weekend.
Nat.

Ontario48
Posts: 55
Joined: Jan 2013

Hello Lone, first I'd like to say sorry about your dads passing. Lots to deal with all at once.  Sounds like it is a blessing for him, he will be at peace now.

And Nat is right, we will be super sensitive to anything new on our bodies that we find.  And we should be.  Anything "abnormal" should be looked at.  I have read that spread to lymph nodes is extremely rare.  Since you have had a sore throat I would expect it's from that as that is very normal with an infection.  Generally if there is a spread to lymph nodes I would think it to be near the site as well.  Do keep your appointment and have it looked at.  Unfortunately with this cancer we will have the concern of regrowth hanging over our heads for a while.  It fades into our day to day and we can only monitor ourselves.  This type of cancer needs to be monitored for the rest of our lives.

So try not to worry too much but don't feel bad for worrying.  It's your right, you had cancer.

Chin up lady!!  Jo

caroleinnkeeper
Posts: 8
Joined: Apr 2013

I have an innoculation site (childhood shots) from the 50's on my upper thigh that always was odd and large. I had a sliced off biopsy done in 2011 but it didn't show anything. Then this past year the site got weirder, a circle formed and then it got raised and red. My dermatologist took it (8 stitches worth) and biopsy confirmed this is what it is. She got clear margins on the bottom, but the sides need more. I go on 4/22 to get that done at a hospital with a pathologist on hand to tell them when as is clear. I have read a lot and hopeful what they say is correct, and nothing going into other places. I do understnd the reoccurance rate is high, but just in the same place so need to be vigiliant. Should be interesting. People seemed amazed when I tell them that 1 in 1 million are diganosed with this!

Ontario48
Posts: 55
Joined: Jan 2013

Hi CIK,

Can you believe it.  We were all shocked as you find yourself now.  Sounds like you will have Moh's Surgery.  Key is removal, if you can push for chest screen do so.  Read up on STS, soft tissue sarcoma.  This cancer is in that family, more info there.  Not sure what you have read but all indications are if you have a sarcoma, see a sarcoma specialist.  Tends to go with a dermatologist due to it being in the skin. But this is a tricky cancer.  High survival rate all in all but growth patterns are tricky and pathology is tricky.  It so rare studies are all over the place, not much $$ dedicated for research.

STS represent 1% of all adult cancers, DFSP is rare within that group.  Very rare to spread to lymph nodes or distant (lungs).  Recurrence will depend on surgical removal, margins to clearance.  Get a good surgeon who has experience with this.

Lots of great support on here...I am sure you will hear them chime in soon.

Joanne

natmcg
Posts: 119
Joined: Jun 2012

Hi and welcome to the club you never wanted to join but now your here welcome to our little discussion group. J

oanne has already stated the most important points. Having Drs and pathologists that deal with sarcomas is the key to getting those clear margins we all are so use to talking about. Clear margins are our best chance of nil reoccurring but still not a 100% guarantee. You didn't mention where you live. Some of us with DFSP have had to travel out of our home towns to see the most experienced Drs.
. I am fortunate that my dermo is a Mohs surgon,sarcoma specialist and a pathologist who had delt wth DFSP many times before my case and now he has a DFSP research Dr workingwith him who is recompiling DFSP info and will publish up-to-date finding later this year. I had my 6mth checkup recently and read all the certificates on the waiting room wall(even though I had.check it all out on my drs web page) because it is so important to be confident with the people dealing.with your health. Joanne also mentioned the chest xray. My Drs don't feel I need one because I fall.into the very unlikely.to reoccur percentage.of the.overall.DFSP group BUT I will probably get one.through my GP just for my own peace of mind. :-)
Good luck and hope you stay say in touch

Natalie

natmcg
Posts: 119
Joined: Jun 2012

Ooops did again lol I get a.bit impatient and push the submit twice.
Chiming out now.
Nat.

caroleinnkeeper
Posts: 8
Joined: Apr 2013

I am very fortunate to be just outside of Orlando and only 15 minutes from the fabulous Florida Hospital Cancer Center. The dermotologist who already removed the tumor and got clear bottom margins is excellent. The surgeon who will be taking more to get all round clear margins is also excellent and has seen about 20 cases of DSFP. My derm has only seen 8 in her long career. So, time will tell but as far as having amazing care, I have no doubt that this will be the case. Surgery is set for 4/22 and I am ready for it! I will only have to stay overnight if they do a skin graft. I already have an 8 stitch closure and that was kind of stretching it, so it really depends just how much more they take. I would certainly rather not have it, but we'll just have to see. I am self employeed, have a B&B for 20 years, so any time taken to close the business is not good, but will do what I need to do to heal. 

Thanks all for your expert feedback! 

Lone111
Posts: 32
Joined: Mar 2013

Hi Carole good thing you found this thread - Nat and Jo are very good at helping in here, with answers and comfort. I hope every goes as planed on April 22.

I went to my GP today and he was very concerned about my swolen lymph node behind the ear. A week a go I had a swolen lymph node in my cheek. In january when i first had the fat tissue tumor that came back with DFSP removed from my hip i also had a fat tissue tumor removed from my neck and since the pathology from the surgery came back with have been removed in healthy skin I have had the recurring though that maybe the tests got swiched in the lab and really it was the one in the neck that had the DFSP and now that my throad has been acting wierd for a couple of weeks... My GP wants to talk to my oncologist and then get back to me tomorrow he wants to see it they can do an ultrasound of my neck if not i have to wait in line for an ardinary referrel and that might take several month.

I have this mean inner voice telling me " I knew it no one gets over cancer that easily "

natmcg
Posts: 119
Joined: Jun 2012

Dear Lone,,
I wish I could say something to ease your concerns...but I know no matter what I say you will still worry( as we all would in your situation.)

Try and deal with facts only. It is highly unlikely that your tests were mixed up. It's only right that your Dr should be.thorough and there are so many OTHER reasons lymph nodes become irritated.
Remember It isn't anything till the Dr say it is. You say you HAD a swollen mode in your cheek, has this now.gone ? What about the one on your neck is it still swollen?
I'm asking because I have read that nodes that are affected by cancer do not get bigger then smaller again. So that might be something to ask. Also besides an ultrasound can they do a biopsy? I know someone who had several " pin/punch biopsies on his neck but Im not sure if it was for a lymph node or someother issue...

I'm hoping you will get in for your tests asap. Surely as it hasn't been that long since your op the oncologist can order the appropriate tests with out you waiting mths. Even your Dr should be able to push things through faster if he is concerned.
But let's not get ahead of ourselves here. See what the oncologist says first. You can only do one thing at a time. And waiting for things to happen is alway hard.

Try and stay positive.
I'm giving you a BIG. cyber hug "O" to try and make you feel better,can you feel that ?? I do a lot of patting on your back when I hug don't I ? LOL .It's the mother in me I can't help it...

Nat.

Ps, Jo will pop in soon, .( thats if she has finished watching golf ha ha.)she's sure to have something positive to add.

Ontario48
Posts: 55
Joined: Jan 2013

Hello Lone,  My best advise to you is to find a sarcoma specialist (soft tissue sarcoma).  Here (Toronto) you normally need a referral but i just googled one found her email and told her my situation.  She got back to me the same day and I got all my paper work to her.  I see her on the 7th of May.  A misdiagnosis is not uncommon for this type of cancer.  It can mimick normal fat cells...that's why I've said in the past that this type of cancer is tricky.

I would hope that the oncologist will get you in for tests quickly as you already have a history if not start calling around and don't accept no for an answer.  Keep us posted and we are here for you.

Jo

caroleinnkeeper
Posts: 8
Joined: Apr 2013

I imagine now everything "odd" we all see will make us think that is something new. I guess we all have to take it one issue at a time and to try not to worry anymore than we feel we have to. Easier said then done I am sure! 

Lone111
Posts: 32
Joined: Mar 2013

My GP didn't get back to me today - hope he will tomorrow.

thanks for the hug and comfort - i'll try to see if I can get a biopsy of the lymphnode when the GP calls. The lymph node in the cheek was only swolen for a week so that is totally ordinary behavior - I hope. And yes you're propably right there is a good explanation for the lymph nodes swelling - I'm just overly sensitive and easily stressed right now. I have been trying to read up on how long time a lymph node are swolen when cancer is the course and I can't find anything so I guess it varies.

Lone111
Posts: 32
Joined: Mar 2013

When you're told you are cured from cancer it is mainly a matter of believing right? because the doctors cannot tell if all cancer cell are gone - there can still be a few cells back to course another outbreak of this awfull disease - but you have to believe - I have to believe. I sure hope Jo is right that after the first year this cancer thing won't take up so much space in the thoughts anymore. And the facts about DFSP should make it earsier to believe that we are cured than many of the others awfull cancers.

And a lot of things should have been going wrong for me to have a cancer speading in my throat - firstly the test should have been switched - very unlikely - second - since DFSP rarely spreads to lymphnodes and not with this speed the cancer should have been misdiagnosed - also unlikely I think - third - you can reraly fell cancer spreading that is one of the things that makes it so scary. All in all it is propably a weird virus that'll pass in a couple of weeks.

My GP called and said the oncologist would think about what should happen and he might call me in otherwise I'll wait in line - and I think I'll be ok with that, since according to my above statement the chances of this being cancer related are very small.

I have booket some consultations with a hypnotherapist - first on April 29. and I really hope that help me think less of cancer - I hope it can make me believe :-)

BTW: Nat what about x-rays at the dentist? how do you do that?

The best to you all - has anyone heard from Helen?

Lone111
Posts: 32
Joined: Mar 2013

the oncology called - they'll see me monday - I guess they don't think cancer that unlikely...I'm so scared again

Ontario48
Posts: 55
Joined: Jan 2013

Hello Lone, I know its hard but don't get ahead of yourself.  Get all the facts first and then the next steps is working through it.  If its something you will have to deal with it and get through it.  Call in all your supports and draw strength from your kids...they can be very distracting :) .

Good Luck on Monday.  I am off on holidays for the next week or so.  Will check in for an update when I get back. 

Jo

PS, not sure if you guys are getting these posts or not.

natmcg
Posts: 119
Joined: Jun 2012

Hi Lone & Jo,

Yep your.post is here, well I.can see it.!!

Lone look at the.positive...you don't have to wait too long...and the oncologist is just doing his/her job....they need to see you and record your concerns....and maybe do some more tests. But it doesn't mean anything except that they are being thorough....and if there is something to deal with...then that's what you will do.

Your young,generaly healthy and your chest xray was clear. Btw I don't have xrays at the dentist anymore. Not since I found out about my brain tumor.

Seeing a therapist should be good fot you. I saw one a few yrs ago and she didn't really hypnotize me fully, but put positive suggestions into my thoughts and she taught me self hypnosis & meditation. It takes a bit of practice but I found it worked when I was told about the tumor and the DFSP. With meditation I can get my blood pressure Down and not take medication. Don't hete wrong on both occasions I felt scared and confused and I cried myself to sleep many nights. But I just kept counting my blessings and trusted that the Drs in both cases new what they were doing. And so far do good.:-)

You asked about Helen. I was thinking about her&her .husband the other day . I sent her am email.but haven't had a.reply.

I had contact with an Italian lady last week who's son has DFSP on hid foot....poor boy....only 8yrs I think...she.posted on one of the other older DFSP threads...so I emailed her and invited her to join in here. She said she would but this.site takes a bit of getting use to. It might try another email...see how she is doing...she did mention the drs didn't know much about DFSP.....no surprise there!!

I'd better go now
Take care lone try not to think about the " what ifs" and enjoy the weekend.
Nat.

Lone111
Posts: 32
Joined: Mar 2013

It was good I had a talk with the oncologist yesterday because appently I had misunderstood what he told me about the "meat" he removed surgically - it did contain DFSP and therefor there is no risk of the pathology tests being switched between the lump in the hip and the lump in my neck. He made a note in my journal that we should have a talk about my throad/neck when i go for my follow up appointment in July to see if I still have issues. But it could not be the DFSP causing lymph node to swell because DFSP spread through the blood if it spreads, he told me.

I hope the hypnotherapist can make me confident about my body again - first appointment on monday - otherwise I fear i'll freak out everytime some thing happens with my body.

I hope you're surgery went well Carole.

I hope you're all enjoying life.

Lone

natmcg
Posts: 119
Joined: Jun 2012

Hi Lone,
I actualy wrote a big post to you two days ago but it didnt go on this board and yesterday i couldnt log on. It kept saying "web page not avaliable" never mind Im here now.
So it sounds like your appointment went well. But Im a bit confused about what you said about DFSP not going to lymph nodes, dosent blood flow throw lymph nodes?, When I went for my check up my Dr. checked my armpits, neck and groin to see if there was swelling or lumps. Hmmmm. Are lymph nodes and glands the same thing.?... Maybe when Jo gets back from holidays she can help me out.
Or maybe I could google it. :-\

So have the swellings/ soreness you had in your cheek and neck gone?
I think you will be much more relaxed after your visit with the therapist. I know it helped me
when I saw one, she taught me some easy coping skills, which i still use at times,

Stay happy &safe,
Nat.

caroleinnkeeper
Posts: 8
Joined: Apr 2013

I had my surgery Monday and things went well. I had already had my tumor removed along with a lot of tissue. She didn't have clear margins, so this was to go in and take more, until margins were clear. I have a 7" long cut, rather narrow now, to heal, but didn't need a skin graft. They didn't know going into it if I would need one or not, just depended on what they ended up having to do. So, I have blocked out this week to just rest and heal, and my next B&B guests are coming in Friday. My husband is being very helpful, but really just resting and icing is the only thing to do right now. Thanks for all your warm thoughts!

natmcg
Posts: 119
Joined: Jun 2012

Hi Carol,
Glad to hear everything went well. Good that you didnt need graft cause then you would have 2 sore spots. Sounds like
you have everything worked out.

B&B in FLoriad sou nds like a great place to visit:

Take care
Nat,

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