Hi all. It seems that Fred hasn't changed since the December MRI. So, at this time it is just wait and see. I am scheduled for my next MRI on Sept 12th at Moffitt.
It seems that the "positive margin" is so microscopic that it could be scar tissue and not desmoid at all. Desmoid and scar tissue are very similar and with the amount it is impossible to tell. The fact that there hasn't been any change over the last 3 months leans toward scar tissue, which is great.
Regardless, I will still need to get MRIs every six months for at least the next five years to make sure there isn't a recurrence (or growth if the margins truly are disease). At that point I believe it goes to once a year indefinitely.
Thanks to everyone for your love and support. I am so very blessed to be surrounded by such caring and generous friends and family.
Unless something new arises, I won't post any new blogs until my next MRI in September.
Love,
Kel
Tuesday, March 8, 2011
Wednesday, February 23, 2011
WOOOOHOOOOO!!!! Good news
I met with Dr Pollock today, he is a wonderful man. He actually trained Dr Gonzalez (who I saw at Moffitt) and felt good about his recommendation. He told me to go ahead and have the MRI at Moffitt on 3/7 and we will go from there.
He said that what I currently have is about half an inch big. He feels that getting scans every 4-6 months to see what it is doing gives us plenty of time to get it out if it starts to grow. He actually said that what I still have could be scar tissue instead of remnants of the desmoid tumor. After the fact, I am needing more clarification on this and will be emailing him to ask. He said there are tests they can do to confirm whether it is scar tissue or desmoid that remains. But, it is as invasive as going in to remove it, so it doesn't seem practical.
He said if the MRI shows growth/changes then we know it is desmoid because the scar tissue wouldn't do that. And, depending on how it has changed/grown we can work together to determine the best course of action.
He said there isn't any research supporting having a hysterectomy to stop the flow of estrogen to prevent growth. He said if the MRI in March confirms that I still have desmoid tumor remnants, then it may be wise to go on the Tamoxifen and NSAID (anti-estrogen, and anti-inflammatory) to help prevent growth.
Glen asked about any lifestyle changes that could be proactive. Dr Pollock said the best advice is to not let this control or change our lives. It is definitely controllable with these scans and watching.
He gave me his card and said to email or call with any questions even if it is years from now. I will always be considered one of his patients. The MD Anderson facility was amazing and I am very thankful to those of you who helped make this trip possible.
I feel better already. I am looking forward to a good night's sleep and going home tomorrow!
THANK YOU, THANK YOU, THANK YOU, to everyone who prayed, and listened, and wrote, and sent so much love and positive energy my way. It is such a wonderful feeling to be this loved!!!!
I will write again after the MRI and appointment on 3/7. If I remember correctly, it is a late appointment, so it will likely be sometime that night before I can send an update.
Did I say thank you??? THANK YOU!!!!
Love,
Kel
He said that what I currently have is about half an inch big. He feels that getting scans every 4-6 months to see what it is doing gives us plenty of time to get it out if it starts to grow. He actually said that what I still have could be scar tissue instead of remnants of the desmoid tumor. After the fact, I am needing more clarification on this and will be emailing him to ask. He said there are tests they can do to confirm whether it is scar tissue or desmoid that remains. But, it is as invasive as going in to remove it, so it doesn't seem practical.
He said if the MRI shows growth/changes then we know it is desmoid because the scar tissue wouldn't do that. And, depending on how it has changed/grown we can work together to determine the best course of action.
He said there isn't any research supporting having a hysterectomy to stop the flow of estrogen to prevent growth. He said if the MRI in March confirms that I still have desmoid tumor remnants, then it may be wise to go on the Tamoxifen and NSAID (anti-estrogen, and anti-inflammatory) to help prevent growth.
Glen asked about any lifestyle changes that could be proactive. Dr Pollock said the best advice is to not let this control or change our lives. It is definitely controllable with these scans and watching.
He gave me his card and said to email or call with any questions even if it is years from now. I will always be considered one of his patients. The MD Anderson facility was amazing and I am very thankful to those of you who helped make this trip possible.
I feel better already. I am looking forward to a good night's sleep and going home tomorrow!
THANK YOU, THANK YOU, THANK YOU, to everyone who prayed, and listened, and wrote, and sent so much love and positive energy my way. It is such a wonderful feeling to be this loved!!!!
I will write again after the MRI and appointment on 3/7. If I remember correctly, it is a late appointment, so it will likely be sometime that night before I can send an update.
Did I say thank you??? THANK YOU!!!!
Love,
Kel
Tuesday, February 22, 2011
Settled in for the big first day tomorrow at MD Anderson
Hi all. I am FEELING the love and prayers and energy. Thank you so much for your support. I am soooooo very blessed. Sitting in my motel room (leaves a lot to be desired, but I am making it work) and reading all the posts and emails. THANK each and everyone of you sincerely. It means so much to have so many people sending their love, prayers, support, energy, compassion.
I am not sure how long I will be at MDA tomorrow. I have my initial registration appt at 7:15am then Dr Pollock at 8:15am, then who knows from there. As soon as I am able, I will post an update. At the very latest, tomorrow night.
Thanks again, so much!!!! Love,
Kelly
I am not sure how long I will be at MDA tomorrow. I have my initial registration appt at 7:15am then Dr Pollock at 8:15am, then who knows from there. As soon as I am able, I will post an update. At the very latest, tomorrow night.
Thanks again, so much!!!! Love,
Kelly
Sunday, February 13, 2011
History of my tumor
First off, thanks for caring and reading about my situation, this may be a bit long - but covers a lot of info and helps me keep track as well. I tend to write like a talk and at times it is stream-of-consciousness, so please bare with me. Also, I am also under a lot of stress and tend to have a potty mouth. So, for those of you that I usually have the censor on for, please forgive me if I end up blogging with f-bombs at times . . . I'm scared.
In January of 2010 I had a breast reduction. Two weeks later I noticed a lump about the size of a pea underneath my right breast (at what they call the 5 o'clock position) at the incision line. I asked the plastic surgeon about it and he said it was just scar tissue.
In May of 2010 I had my annual physical with my PCP (Dr Ina) and mentioned it, as it was right where my bra hit and was uncomfortable. He didn't think it felt like scar tissue and sent me for a mammogram and ultrasound. The results where "suspicious, not related to scarring." Dr Ina referred me to a general surgeon.
I chose to go to Moffitt Cancer Center instead. I had worked there previously for 7 years and had a high level of respect for the center. Plus, I had spoken to my friend Miriam who is a health care professional and worked there for close to 20 years and she said definitely go there. She also helped get me in very quickly and talked me out of my hysteria (thanks woman!).
In June I went to see the breast surgeon Dr Khakpour at Moffitt. They did an MRI and thought it was nothing to be concerned about but found another suspicious area in the 2 o'clock position. I explained that I still wanted the tumor out. We decided to start with a core needle biopsy on the second area to determine if that needed to be removed at the same time as the tumor.
In July I had the biopsy and it came back as just fibrous and nothing to be concerned about. So, we scheduled the surgery to take out the tumor. At this point the tumor was just shy of being the size of a golf ball (by feel anyway).
On August 25th I had the tumor taken out. After the surgery she said that it wasn't in the breast tissue at all, it was in the chest wall. She said it was so far into my muscle that she was almost in my abdomen. At my post op appt she explained that it wasn't the type of tumor they thought it would be, but it was benign. It was a type that tends to come back. I had negative margins, but she wanted to go back in and do a resection to be sure that they got any microscopic cells to ensure it wouldn't come back.
On November 3rd I had the resection. At post op, December 2, she told me I had positive margins this time and would likely need more surgery on my "cancer". I told her I thought it wasn't cancer. She said it was benign. She wanted me to see a Sarcoma Oncologist and a Radiation Oncologist. I talked to her about the 2 o'clock area feeling more dense. So, she also wanted me to have another ultrasound on it.
December 3rd I had the ultrasound. It came back still normal.
December 6th I met with the Sarcoma Oncologist, Dr Gonzalez. He told me that with a desmoid tumor (defined below) they usually go in and do a large resection often involving removing ribs and muscle to ensure the tumor doesn't return. But, he suggested I have another MRI and let them discuss it at the tumor boards to decide. The surgery would possibly create chronic chest pain and/or disability. He also told me that this type of tumor couldn't effect my organs (later I found out this is incorrect).
December 7th (my birthday) I met with the Radiation Oncologist, Dr Harris. She said that with desmoid tumors they usually don't do radiation until there is a recurrence. The level of radiation they would need to use makes it a one shot deal. Also, the radiation could cause cancer. And, if I later ended up with breast cancer they would have to do a mastectomy because radiation would no longer be an option. The radiation could cause subtle sunburn like reaction at the site to blisters and possibly a cough, especially if they needed to include the lung.
I had had a chance to do some research prior to my appt with Dr Harris so asked more questions. Including, do I or do I not have cancer, because I had heard both every day over the past week. I always thought benign was they antithesis of cancer. They explained that I do have cancer but it is a type that typically does not metastasize. Basically cancer is defined by cells that do not shut down and die off when they are supposed to and subsequently turn into bad cells.
At this point, and I am not sure why, I named my tumor Fred. It just came to me. Hence, the blog title
December 8th I had my MRI.
December 10th Dr Gonzalez called me to tell me that based on my MRI the tumor boards felt that we should take a wait and see approach. They scheduled me for a follow up MRI and appt on March 7th.
Since then I have done a plethora of research. www.dtrf.org is a great sight and I have joined a listserv through them that is a group of other people with desmoid tumors.
Here is the basics of what I have learned. Desmoid tumors are very rare. Typically there are 2-4 per million people per year (compared with breast cancer which is 1 in 8 people, you get the idea). These tumors are very aggressive and have a high recurrence rate even with negative margins. They can infiltrate and destroy: bone, tissue, nerves, blood vessels, muscles, and organs. Some people have had to have amputations (mostly with limb tumors). Mine is in my chest wall which is rare for desmoids. Desmoids tend to be hormone driven, most people with them take anti-estrogen medications. They often show up with pregnancies, especially if it is a c-section.
There are two types, one is related to a disease called FAP (familial adenomatous polyposis) these usually run in families and lead to colon cancer. Although my Daddy died of colon cancer, from my research I don't believe he had FAP. I also don't think anyone in my family has it (but if you are a family member and do have it or know of someone in the family with this, I really need to know). The other type, which is what I believe I have, is considered a sporadic or spontaneous desmoid tumor. These usually show up in scars or at the sight of trauma.
The various treatments which are done alone or in concert with each other include: surgery, radiation therapy, chemo (both infusion type and oral), cryoablation, chemical ablation, and radiofrequency ablation. There may be others but this is what I have learned so far.
Needless to say this is all quite frightening. I talked to my friends Josh (who has had his own cancer battle) and his wife Haley (who is an ER doctor). They highly suggested going to MD Anderson in Houston (where Josh went) or Sloan Kettering, one of the bigger cancer centers. They said that Moffitt is focused on research where MDA is focused on treatment. I researched studies done on desmoid tumors and found that the doctors with the most experience were at these two facilities, but more at MDA then SK. So, I contacted them for a second opinion and treatment.
Meanwhile, I had a follow up appt with my PCP. He does have one other patient who has a desmoid. After surgery with negative margins he has been on Gleevec (an oral chemo drug) for ten years without a recurrence. Dr Ina was glad that I was going to MDA. I asked what he would do in my situation. He said get it out. He said we can control the pain, we can't control the tumor.
I also went to my GYN (Dr. Shemesh) for my well woman visit and talked to him about the hormone angle and holistics (he does both). I was curious if a hysterectomy would help since I haven't entered menopause yet and have no interest in having children (other than my wonderful stepkids). He said he wasn't aware of research into that and thought I should ask at MDA. He said if I did do it, I should have a GYN Oncologist perform the surgery. He also put me on a Broccoli Seed Extract that has shown good results in fighting cancers.
I have also been seeing my acupuncturist, Dr Hermann (who happens to be working with patients at Moffitt and has had some good results). She is working with me through electrical stimulated acupuncture at the tumor site as well as acupuncture for stress and sleeping.
My beloved chiropractor Dr Bain and massage therapist Joann Muir, have also been working with me and been extremely supportive.
MD Anderson has all my records from Moffitt and has scheduled me for my first appt on February 23rd with Dr. Pollock (who has done multiple studies on desmoids). They told me to plan to be there for 5 business days to be available for any testing that he requires. Due to our business, we have decided that for this trip I will go solo and Glen will be able to "attend" via speakerphone during my appt(s).
I also want to thank Josh and Haley for all of the advice and support. They are such gracious and loving people!!!
I will keep posting out here as I go through my journey. Please keep me in your thoughts, prayers, positive energy flow, etc. I need all the help I can get. Thank you so much for being my friend/family and caring about me.
In January of 2010 I had a breast reduction. Two weeks later I noticed a lump about the size of a pea underneath my right breast (at what they call the 5 o'clock position) at the incision line. I asked the plastic surgeon about it and he said it was just scar tissue.
In May of 2010 I had my annual physical with my PCP (Dr Ina) and mentioned it, as it was right where my bra hit and was uncomfortable. He didn't think it felt like scar tissue and sent me for a mammogram and ultrasound. The results where "suspicious, not related to scarring." Dr Ina referred me to a general surgeon.
I chose to go to Moffitt Cancer Center instead. I had worked there previously for 7 years and had a high level of respect for the center. Plus, I had spoken to my friend Miriam who is a health care professional and worked there for close to 20 years and she said definitely go there. She also helped get me in very quickly and talked me out of my hysteria (thanks woman!).
In June I went to see the breast surgeon Dr Khakpour at Moffitt. They did an MRI and thought it was nothing to be concerned about but found another suspicious area in the 2 o'clock position. I explained that I still wanted the tumor out. We decided to start with a core needle biopsy on the second area to determine if that needed to be removed at the same time as the tumor.
In July I had the biopsy and it came back as just fibrous and nothing to be concerned about. So, we scheduled the surgery to take out the tumor. At this point the tumor was just shy of being the size of a golf ball (by feel anyway).
On August 25th I had the tumor taken out. After the surgery she said that it wasn't in the breast tissue at all, it was in the chest wall. She said it was so far into my muscle that she was almost in my abdomen. At my post op appt she explained that it wasn't the type of tumor they thought it would be, but it was benign. It was a type that tends to come back. I had negative margins, but she wanted to go back in and do a resection to be sure that they got any microscopic cells to ensure it wouldn't come back.
On November 3rd I had the resection. At post op, December 2, she told me I had positive margins this time and would likely need more surgery on my "cancer". I told her I thought it wasn't cancer. She said it was benign. She wanted me to see a Sarcoma Oncologist and a Radiation Oncologist. I talked to her about the 2 o'clock area feeling more dense. So, she also wanted me to have another ultrasound on it.
December 3rd I had the ultrasound. It came back still normal.
December 6th I met with the Sarcoma Oncologist, Dr Gonzalez. He told me that with a desmoid tumor (defined below) they usually go in and do a large resection often involving removing ribs and muscle to ensure the tumor doesn't return. But, he suggested I have another MRI and let them discuss it at the tumor boards to decide. The surgery would possibly create chronic chest pain and/or disability. He also told me that this type of tumor couldn't effect my organs (later I found out this is incorrect).
December 7th (my birthday) I met with the Radiation Oncologist, Dr Harris. She said that with desmoid tumors they usually don't do radiation until there is a recurrence. The level of radiation they would need to use makes it a one shot deal. Also, the radiation could cause cancer. And, if I later ended up with breast cancer they would have to do a mastectomy because radiation would no longer be an option. The radiation could cause subtle sunburn like reaction at the site to blisters and possibly a cough, especially if they needed to include the lung.
I had had a chance to do some research prior to my appt with Dr Harris so asked more questions. Including, do I or do I not have cancer, because I had heard both every day over the past week. I always thought benign was they antithesis of cancer. They explained that I do have cancer but it is a type that typically does not metastasize. Basically cancer is defined by cells that do not shut down and die off when they are supposed to and subsequently turn into bad cells.
At this point, and I am not sure why, I named my tumor Fred. It just came to me. Hence, the blog title
December 8th I had my MRI.
December 10th Dr Gonzalez called me to tell me that based on my MRI the tumor boards felt that we should take a wait and see approach. They scheduled me for a follow up MRI and appt on March 7th.
Since then I have done a plethora of research. www.dtrf.org is a great sight and I have joined a listserv through them that is a group of other people with desmoid tumors.
Here is the basics of what I have learned. Desmoid tumors are very rare. Typically there are 2-4 per million people per year (compared with breast cancer which is 1 in 8 people, you get the idea). These tumors are very aggressive and have a high recurrence rate even with negative margins. They can infiltrate and destroy: bone, tissue, nerves, blood vessels, muscles, and organs. Some people have had to have amputations (mostly with limb tumors). Mine is in my chest wall which is rare for desmoids. Desmoids tend to be hormone driven, most people with them take anti-estrogen medications. They often show up with pregnancies, especially if it is a c-section.
There are two types, one is related to a disease called FAP (familial adenomatous polyposis) these usually run in families and lead to colon cancer. Although my Daddy died of colon cancer, from my research I don't believe he had FAP. I also don't think anyone in my family has it (but if you are a family member and do have it or know of someone in the family with this, I really need to know). The other type, which is what I believe I have, is considered a sporadic or spontaneous desmoid tumor. These usually show up in scars or at the sight of trauma.
The various treatments which are done alone or in concert with each other include: surgery, radiation therapy, chemo (both infusion type and oral), cryoablation, chemical ablation, and radiofrequency ablation. There may be others but this is what I have learned so far.
Needless to say this is all quite frightening. I talked to my friends Josh (who has had his own cancer battle) and his wife Haley (who is an ER doctor). They highly suggested going to MD Anderson in Houston (where Josh went) or Sloan Kettering, one of the bigger cancer centers. They said that Moffitt is focused on research where MDA is focused on treatment. I researched studies done on desmoid tumors and found that the doctors with the most experience were at these two facilities, but more at MDA then SK. So, I contacted them for a second opinion and treatment.
Meanwhile, I had a follow up appt with my PCP. He does have one other patient who has a desmoid. After surgery with negative margins he has been on Gleevec (an oral chemo drug) for ten years without a recurrence. Dr Ina was glad that I was going to MDA. I asked what he would do in my situation. He said get it out. He said we can control the pain, we can't control the tumor.
I also went to my GYN (Dr. Shemesh) for my well woman visit and talked to him about the hormone angle and holistics (he does both). I was curious if a hysterectomy would help since I haven't entered menopause yet and have no interest in having children (other than my wonderful stepkids). He said he wasn't aware of research into that and thought I should ask at MDA. He said if I did do it, I should have a GYN Oncologist perform the surgery. He also put me on a Broccoli Seed Extract that has shown good results in fighting cancers.
I have also been seeing my acupuncturist, Dr Hermann (who happens to be working with patients at Moffitt and has had some good results). She is working with me through electrical stimulated acupuncture at the tumor site as well as acupuncture for stress and sleeping.
My beloved chiropractor Dr Bain and massage therapist Joann Muir, have also been working with me and been extremely supportive.
MD Anderson has all my records from Moffitt and has scheduled me for my first appt on February 23rd with Dr. Pollock (who has done multiple studies on desmoids). They told me to plan to be there for 5 business days to be available for any testing that he requires. Due to our business, we have decided that for this trip I will go solo and Glen will be able to "attend" via speakerphone during my appt(s).
I also want to thank Josh and Haley for all of the advice and support. They are such gracious and loving people!!!
I will keep posting out here as I go through my journey. Please keep me in your thoughts, prayers, positive energy flow, etc. I need all the help I can get. Thank you so much for being my friend/family and caring about me.
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