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Old 12-30-2010, 12:59 PM   #1
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Fibromatosis/Desmoid tumor

Hello. My mother has fibromatosis/a desmoid tumor in her neck. She had surgery but her surgeon was not able to remove all of the tumour. The next step could be radiation. If there is anyone at all who has this disease or who knows someone who does, I would love to talk with you. It is a very rare disease so it is very hard to find doctors who have the experience to treat it. Thank you.

 
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Old 01-02-2011, 12:33 PM   #2
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Re: Fibromatosis/Desmoid tumor

I have a fibromatomis tumor in my left arch (foot). So far it's not affecting me all that much, but if it grows, it would have to be treated.

These tumors are NOT cancerous, but they can affect mobility or function as they infiltrate the ligaments and tendons. Sounds like your mother is getting the treatment she needs. You may want to get a second opinion as to whether or not the radiation is absolutely necessary, or if necessary, how it will affect her. Radiation treatment to the neck can sometimes affect taste and smell, although they can target tumors quite precisely, so it may not affect her that badly.

The good news is, as I said above, this is NOT cancer.

Ruth

 
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Old 01-06-2011, 08:03 PM   #3
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Re: Fibromatosis/Desmoid tumor

My mother had a large grapefruit size desmoid tumor in her R upper chest. She went to Boston, Bringham and Women's Hospital, to have it removed about 5 years ago. I do believe they were able to get it all.

She made a complete recovery and other than the physical scars. She did not require radiation. She was 57 at the time.

 
Old 02-22-2011, 07:57 AM   #4
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Re: Fibromatosis/Desmoid tumor

Quote:
Originally Posted by rhody27 View Post
Hello. My mother has fibromatosis/a desmoid tumor in her neck. She had surgery but her surgeon was not able to remove all of the tumour. The next step could be radiation. If there is anyone at all who has this disease or who knows someone who does, I would love to talk with you. It is a very rare disease so it is very hard to find doctors who have the experience to treat it. Thank you.
Hello

I had exactly this 7 years ago. Being an idiot I left it a while before admitting there was something there, which meant it was quite large when they got to remove it. Probably partly because of this is why they had to leave some behind, it was tangled up with nerves etc. Anyway, because of its rarity and not really knowing what it might do, they left it and kept an eye on it. Two years later it had started growing again so they removed it again, leaving behind around 30%, and I then had radiotherapy. That was nearly 5 years ago now, and fingers crossed, it seems to have done the trick. They still check me with an MRI every year, purely because it is still something of an unknown quantity, they can't say for sure exactly how it will behave, but it does seem to have stopped it in its tracks.

The thing with this one is (they told me) they don't know if after surgery it might just stop growing of its own accord, shrink or carry on going. There isn't enough information on it to be able to say for sure. Even my top surgeon, even though he had dealt with them before, was relatively limited in his experience, certainly compared to other kinds of tumours. My one was photographed after removal, makes me feel proud and sick all at the same time, lol.

If you want to talk more about it, feel free to contact me.

Best wishes

 
Old 04-30-2011, 04:52 PM   #5
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Re: Fibromatosis/Desmoid tumor

I have recently been diagnosed for the second time within a two year period with fibromatosis. After the first diagnosis, I went in for surgey to have it removed, similar to others, they also had to remove two ribs. Following surgery and for a period of 18 months, I had considerable pain and this was very hard to deal with. Recently, in January of 2011, I noticied a new lump forming on my back and this then led to a MRI which confirmed that the tumour had reformed. In the past month, I have been undergoing radiation treatment to try to arrest the growth of the tumour and determine if it can be shrunk. I still have one more month of radiation to go - and not certain what will be the outcome. As you mentioned there is very little information on this but if someone has more details, I am interested in learning more and please let me know.

 
Old 05-12-2011, 08:58 AM   #6
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Re: Fibromatosis/Desmoid tumor

Hi all~ seems that even tho this tumor is rare we all are going thru the same things. Mine is located on my thoracic @ first it was found on a mammogram, which like most of u I'm sure was thought to be cancer. Biopsy revealed not cancer, two surgeries to have it removed also proved not cancer but in deed fibromatosis. 3rd surgery in process of being scheduled, however a PET scan set for Saturday was ordered first. My question, anyone expierincing pain? Seems like & this is a guess... That it is caught or pressing on nerves. The pain is a tight, pulling, stinging, burning pain. Also since this is under my right breast I see deforming happening. I'm glad I found this site & am looking forward to support as well as being supportive, I wonder if next step is radiation???

 
Old 05-18-2011, 03:07 AM   #7
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Re: Fibromatosis/Desmoid tumor

I am so happy I found this thread!

My mom has been suffering from a desmoid/fibromatosis in her neck for 8 years. It was surgically removed the first time, but they couldn't get it all so they radiated the area. That was unsuccessful and it returned 2 years after... she then had it removed again, but there were still remnants left behind. Her docs recommended chemo. She did the chemo for a short while, and the tumor didn't seem to be skrinking so she stopped chemo and decided to try alternative methods.

They couldn't tell if it was the delayed chemo or her natural remedy (some sort of powder she mixed into drinks), but her tumor began to shrink! It continued to shrink until it was very small and the doctors decided to just leave it alone.

However, 5 years later (summer of 2010) the tumor started growing again -- very rapidly. The docs at Dana Farber put her back on chemo, but after 4 treatments the tumor was still slightly growing, so the chemo was stopped.

The only option left was surgery... so she had the thing removed AGAIN in March of this year. They were able to get about 98% of it, but the leftover remnants are still growing and inching toward her spine. It's already tangled in her nerves, making it very difficult to remove the whole thing.

The doctors are now completely stumped. They gave her the option of doing proton radiation in Jacksonville, Florida... BUT, since she's already been radiated once, there are risks involved (like ending up on a breathing machine or paralyzing her arm) and nobody seems very confident about it.

As you can imagine, she is just exhausted of dealing with this tumor. If she doesn't do anything, the tumor will invade her spine and critical nerves, which is ultimately fatal. She also said that she'd rather die than be on a breathing machine.

I'm watching my mom give up this fight and it's painful... she can't quit, she's only 49 years old!

Is there anyone that can offer advice based on experience? What else could she possibly do? We've been looking into alternative therapies like the Cellect-Budwig Protocol.

I want her to have just an ounce of hope so she can defeat this thing and live to see her grandchildren and such.

 
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Old 07-25-2011, 02:58 PM   #8
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Re: Fibromatosis/Desmoid tumor

Quote:
Originally Posted by Rainyday100 View Post
Hello

I had exactly this 7 years ago. Being an idiot I left it a while before admitting there was something there, which meant it was quite large when they got to remove it. Probably partly because of this is why they had to leave some behind, it was tangled up with nerves etc. Anyway, because of its rarity and not really knowing what it might do, they left it and kept an eye on it. Two years later it had started growing again so they removed it again, leaving behind around 30%, and I then had radiotherapy. That was nearly 5 years ago now, and fingers crossed, it seems to have done the trick. They still check me with an MRI every year, purely because it is still something of an unknown quantity, they can't say for sure exactly how it will behave, but it does seem to have stopped it in its tracks.

The thing with this one is (they told me) they don't know if after surgery it might just stop growing of its own accord, shrink or carry on going. There isn't enough information on it to be able to say for sure. Even my top surgeon, even though he had dealt with them before, was relatively limited in his experience, certainly compared to other kinds of tumours. My one was photographed after removal, makes me feel proud and sick all at the same time, lol.

If you want to talk more about it, feel free to contact me.

Best wishes
Where was your tumor ? Abdomen or ... ?

 
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Old 07-25-2011, 10:22 PM   #9
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Wink Re: Fibromatosis/Desmoid tumor

Its nice reading all the posts about this, knowing im not alone. My tumor is located on my right breast, more on the crease, on my rib close to the chest wall. Ove rthe past few years, I have had it removed twice, mammogram, ultrasound, CT scan, biopsies, PET scan, and just a couple days ago MRI. my surgeon has also sent me to an Oncology surgeon who specializes in the breast. My next appt is friday for the results of the MRI, the surgeon wants to rule out Sarcoma. I have faith in the Lord things wiill be just fine. Although now the past cpl months this tumor has been extremely painful( shooting stinging sharp burning pains) The Surgeon states because of the location of my tumor, the surgery will be very invasive, removing ribs, chest wall etc. My prayers are with you all~ We must be our own advocates and question everything!!! Take Care

 
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Old 08-04-2011, 11:48 AM   #10
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Re: Fibromatosis/Desmoid tumor

Hello,

Three years ago a I was diagnosised with a desmoid tumor the first surgery did not get it all and the second one was more invasive including removal of ribs; however, to date the tumor has returned and I will undergo surgery on the 15th where the tumor, some ribs and muscle with be removed.

 
Old 08-04-2011, 11:51 AM   #11
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Re: Fibromatosis/Desmoid tumor

The tumor is located on my right chest wall. It is very painful and I will be glad to have it removed prayerfully this will be the final time. I am trusting in God!! My thoughts are prayers are with you all.

 
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Old 10-26-2011, 12:44 PM   #12
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Re: Fibromatosis/Desmoid tumor

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Originally Posted by Daisythetumour View Post
Hi, sadly I do know what you are going through hopefully we can give moral support to each other. I was diagnosed on Sept 23rd 2011. I came across your post while looking for others with the same disease/illness. I am based in UK and finding others in UK is proving as rare as this disease. I hear you re the pain. My tumour, Daisy, is in my pectoral minor muscle I.e shoulder. I am due an MRI to see if Daisy is growing then a consult with my team of doctors in Nov; that's when treatment options will be discussed. Anyway enough about me, how are you doing and are you undergoing treatment? Looking forward to your update.
Hi Daisy

Mine was/is in my shoulder/neck, tangled in nerves so yes, was fairly painful, but in an achey way more than anything else. The worst thing now is the 'phantom itches'! I've got no real feeling around the surgery area, but get the itches badly, I can't get rid of it because I can't feel to scratch it, but I find if I scratch my head it travels down and seems to stop it, it's bizarre! However, I'm not complaining, so far, (touch wood) 6 years after radiotherapy, if all I have to worry about is a bit of an odd itch, I'm happy!

I'm also in the UK, had treatment at the Royal Marsden and Addenbrooke's and they were fabulous. If you want to talk about anything, either ask questions, or talk about what your Docs have said, feel free to contact me. As you say, there's so little info available purely from the rarity of it, that to have contact with people who have been through it is invaluable.

Good luck!

 
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Old 11-09-2011, 12:10 PM   #13
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Re: Fibromatosis/Desmoid tumor

Hi Everyone
I am UK based and I have a desmoid called Desmond in my left thigh. I was diagnosed just before Xmas last year. I have just starting taking Tamoxifen to try and shrink the tumour. My experience is as follows: my consultant thought it was a sarcoma that was ruled out by a biopsy, the original plan was to watch and wait, after 3 months another MRI was taken and it had grown a little but was causing pain. My consultant who is head of the East Midlands Sarcoma team suggested that (because work pays for my healthcare privately) I see an oncologist in London called Dr Anna Cassoni for a second opinion. Unfortunately there is no set way throughout the country of dealing with these pesky tumours and my consultant is trying to change this. Dr Cassoni specialises in Fibromatosis and if you google her she has written quite a lot of papers and done a lot of research. I understand a lot of people can't afford private healthcare however, if you have a spare £250 she is well worth a visit as she is a very knowledgeable lady on the dreaded fibromatosis.

 
Old 11-09-2011, 12:17 PM   #14
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Re: Fibromatosis/Desmoid tumor

Quote:
Originally Posted by Daisythetumour View Post
Hi, sadly I do know what you are going through hopefully we can give moral support to each other. I was diagnosed on Sept 23rd 2011. I came across your post while looking for others with the same disease/illness. I am based in UK and finding others in UK is proving as rare as this disease. I hear you re the pain. My tumour, Daisy, is in my pectoral minor muscle I.e shoulder. I am due an MRI to see if Daisy is growing then a consult with my team of doctors in Nov; that's when treatment options will be discussed. Anyway enough about me, how are you doing and are you undergoing treatment? Looking forward to your update.
I am just feeling so happy now that I have found others who are (unfortunately for us) in the same position, if anyone wants to get in touch I will be more than pleased as it is so hard to get non-sufferers to understand what it is like living with this rare disease. Does anyone else find that as soon as you say it is non-cancerous that people just think it's great and don't realise that it can still have a big impact on our lives. (Forgot to say on my original post that mine is attached to my femoral artery and next to my femoral nerve!)

 
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Old 11-28-2011, 11:22 AM   #15
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Re: Fibromatosis/Desmoid tumor

Hi

Great to hear from you!!

I can't take anti-inflammatories unfortunately so I am managing the pain with strongish painkillers. Because I don't want children then we decided that trying Tamoxifen would be the best first course of action - I don't hold out much hope though - as it has taken so long to get me on them! My oncologist in Leicester told me that because I was taking an Antidepresant called Venlafaxine I would have to come off it as it stops the Tamoxifen working so well! I had bad withdrawal from this drug and it took me 3 months to come off it!!!! However after doing a bit of research on the internet I found a British Medical Journal article saying that Venlafaxine was probably one of the best ones to take with Tamoxifen (Are u keeping up with this!) I have just been to my GP and he has put me straight back on the Venlafaxine as his drug bible doesn't state any interactions!!!! I need to have words with my oncologist - cos I have been through hell trying to come off it. Also in the meantime my tumour has been getting more painful and looks bigger therefore when they do the scan to see if the Tamoxifen is working it won't give a true reading as it was June when I last had the scan and October before I started taking the Tamoxifen.
Not sure if I mentioned in my last post that they will probably never be able to remove all of it if I have it operated on as it is attached to my femoral artery and next to my femoral nerve - so if they were to ever remove it, they would have to leave some behind so that they don't cause any problems with my nerve or artery - if they did touch my nerve or my artery there is a huge possibility I would lose my leg!!!

 
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