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FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?

Posted by citizendeveloper @citizendeveloper, Jan 6, 2025

I was diagnosed with FS-DFSP. I've already had my MOHS surgery, and today I meet with my Oncologist to get the results of my CT scan. Is there anyone else who is currently fighting this rare cancer? Also, did you buy a lottery ticket? 😀

Laugh or cry, why not do both!

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littlecat | @littlecat | 5 hours ago

I diagnosis DFSP on my left lower back in March due to unplanned surgery. I did wide excision surgery 2 weeks ago, my report showed all peripheral margins are larger than 18mm but closest deep margin is 5mm in one focus. Doctor suggested that I better to have radiation to avoid the recurrence. But it would hurt my left kidney. I really don't want to do the radiation. What should I do? I am so worry. Anyone has similar experience? It would help me a lot. Thanks

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littlecat | @littlecat | 4 hours ago
In reply to @biceto "@humbl3reh192 , my pathology from the surgery where diagnosis was first confirmed, indicated deep margin of..." + (show)
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@humbl3reh192 , my pathology from the surgery where diagnosis was first confirmed, indicated deep margin of 1.3mm. I was referred to a specialist Professor and had a further surgery at the major cancer facility in my state. My location was low back, so plenty of soft tissue to manipulate to cover the defect of a very wide excision. Very different to a scalp location. I did not have Radiotherapy or Glivec. I was frequent follow ups and scans for 5 years before being released from the Cancer hospital and on my own preference, continued privately with another Professor until the 10 year mark. All good so far!
If you have conflicting advice, it is difficult to know what to do. The question to ask is, do you feel comfortable with one path or the other. If not, perhaps talk to another professional with expertise. Ask your medical team for a referral for overview. Wish you will.

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@biceto

Hi, may I know your distance of deep margin? Mine is 5mm and suggested to do radiation for better result. For myself I don't want to do as the main side effect is it would hurt my kidney. I want more opinion. Thanks

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cmiller1122 | @cmiller1122 | 3 hours ago

Good morning,
I had a tumor behind my right ear resulting in unplanned surgical removal as well by a general surgeon who diagnosed it as a cyst. During the surgery it was described to be the size of a key lime attach to my skull and to be not what they thought it was. They sent it of to pathology and 2 days later it came back as Fibrosarcoma-DFSP aggressive malignancy type. Needless to say reading this in my chart without any doctor reaching out to warn me or consult....I was beside myself and went through every emotion possible. I was sent to Florida Cancer Speacalist who quickly reacted by getting me in to Moffitt which I am so greatfull for the doctor realizing it would be in my best interest and treatment outcome to be treated by Moffitt. Moffitt has been great and they have experience with this type of sarcoma. They suggested targeted radiation which I have 3 treatments left before they will go in using MOHS technique to clear the margins, followed by healing and second surgery for closer of the surgical site by a plastic surgeon. The radiation was scary at first due to the location but honestly I have not had any bad side effects but maybe a little tiredness and of course hair loss on the radiation site. I work a full time job and only missed 1 day of work during the radiation treatment. Is the radiation they suggested to you, little cat targeted to the specific area? I would definitely look at all your options. I can say my FS-DFSP started as the classic version DFSP which is said to be benign however if gone untreated which mine was untreated for many years due to lack of knowledge, it can mutate and become malignant. I suggest talking indepth with doctors and acting as soon as possible. They usually suggest radiation to control size of tumor and possible shrink for more concise and manageable surgery with best possible outcome. Unfortunately our type of rare cancer is to often mis diagnosed resulting in unplanned surgery and no clear margins. This is not the best and oncologist are left cleaning up the mishaps of these unplanned surgerys. I am so sorry you are going through this and we are here for you little cat. I will send healing prayers 🙏 up for you. I also suggest taking advantage of talking with mental health staff to help guide you through this journey you and we are on. GOD bless you and may he guide you and the doctors involved in your care resulting in you regaining your health back. I have not bought a lottery ticket either lol but I have left it in God's hands and I am living one day at a time stress free thanks to God. Love you all and I will remain an advocate for people with cancer as well as continue to update my story.

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cmiller1122 | @cmiller1122 | 3 hours ago
In reply to @colleenyoung "@cmiller1122, welcome. To help you connect with other members, I moved your post about dermatofibrosarcoma protuberans..." + (show)
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@cmiller1122, welcome. To help you connect with other members, I moved your post about dermatofibrosarcoma protuberans (DFSP) to this existing discussion:
- FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?https://connect.mayoclinic.org/discussion/fs-dfsp/

Here you can connect with @citizendeveloper @biceto @karlman @susangourdlady @lala1989 @sarab74 and others who have experience with DFSP.

@cmiller1122, have you completed the diagnostic pathology now? What is your treatment plan? How are you doing?

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@colleenyoung thank you Collen, knowing I am not alone and reading others experiences helps

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littlecat | @littlecat | 3 hours ago
In reply to @cmiller1122 "Good morning, I had a tumor behind my right ear resulting in unplanned surgical removal as..." + (show)
Profile picture for cmiller1122 @cmiller1122

Good morning,
I had a tumor behind my right ear resulting in unplanned surgical removal as well by a general surgeon who diagnosed it as a cyst. During the surgery it was described to be the size of a key lime attach to my skull and to be not what they thought it was. They sent it of to pathology and 2 days later it came back as Fibrosarcoma-DFSP aggressive malignancy type. Needless to say reading this in my chart without any doctor reaching out to warn me or consult....I was beside myself and went through every emotion possible. I was sent to Florida Cancer Speacalist who quickly reacted by getting me in to Moffitt which I am so greatfull for the doctor realizing it would be in my best interest and treatment outcome to be treated by Moffitt. Moffitt has been great and they have experience with this type of sarcoma. They suggested targeted radiation which I have 3 treatments left before they will go in using MOHS technique to clear the margins, followed by healing and second surgery for closer of the surgical site by a plastic surgeon. The radiation was scary at first due to the location but honestly I have not had any bad side effects but maybe a little tiredness and of course hair loss on the radiation site. I work a full time job and only missed 1 day of work during the radiation treatment. Is the radiation they suggested to you, little cat targeted to the specific area? I would definitely look at all your options. I can say my FS-DFSP started as the classic version DFSP which is said to be benign however if gone untreated which mine was untreated for many years due to lack of knowledge, it can mutate and become malignant. I suggest talking indepth with doctors and acting as soon as possible. They usually suggest radiation to control size of tumor and possible shrink for more concise and manageable surgery with best possible outcome. Unfortunately our type of rare cancer is to often mis diagnosed resulting in unplanned surgery and no clear margins. This is not the best and oncologist are left cleaning up the mishaps of these unplanned surgerys. I am so sorry you are going through this and we are here for you little cat. I will send healing prayers 🙏 up for you. I also suggest taking advantage of talking with mental health staff to help guide you through this journey you and we are on. GOD bless you and may he guide you and the doctors involved in your care resulting in you regaining your health back. I have not bought a lottery ticket either lol but I have left it in God's hands and I am living one day at a time stress free thanks to God. Love you all and I will remain an advocate for people with cancer as well as continue to update my story.

Jump to this post

Hi @cmiller1122

Mine is classic DFSP, luckily the less aggressive one. It has been my back over 10 years as I thought it was scar onlyat that time, my careless. I did wide excision surgery and all margins are clear. Doctor suggested me to do radiation to get lower recurrence rate. But I don't want to because it would hurt my kidney, the tumor located in my lower back which close to my kidney. So I decided keeping long term regular check to monitor. Luckily you have Mohs surgery, my city doesn't has Mohs but only wide excision. Mohs is the best surgery method for DFSP. All the best

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