PET-Scan for Patricia
Donation protected
Hello dear friends,
As some of you know, I first found a lump in my left breast in April 2019.
In May, I promptly went to the specialist who sent me for a mammogram & an ultrasound which discovered something suspicious. In June 2019, I had various biopsies (including a vacuum biopsy). All of these tests at that time said that the tumour I had was benign.
However, over the summer, the tumour grew substantially (rapid growth is common in phyllodes tumours) so I returned for an examination at which point my surgeon said that it had to be removed.
On October 16th 2019, a 5cm in diameter phyllodes tumour (only 1% of all breast cancer tumours are phyllodes tumours & of these about 80% are benign) was removed from my left breast. Several samples were taken & sent to two different labs to determine the exact nature of the tumour.
On my birthday, Nov 4th 2019, I received a call from my surgeon that although rare, I had a malignant phyllodes tumour.
Two days later, on Nov 6th, they removed a margin in the hope that another such tumor wouldn't emerge. The operation went well.
Following this in Dec 2019, I had a CT scan & a full body skeletal scan which determined that the cancer had not yet spread. I went into the holiday season very hopeful that all would be well.
Unfortunately, in April 2020, I found another lump near the location of the first tumour. I promptly went to my surgeon for an exam. He said that he thought it was scar tissue but due to the unusual nature of phyllodes tumours, he recommended an MRI.
On June 4th, in the middle of Covid-19, I wore a mask while lying on my belly for 20 of the longest minutes of my life during this MRI.
A few days later, my surgeon informed me that the tumour had returned & that I needed to have a masectomy. He suggested that I consult with one of Germany's top oncologists & plastic surgeons who had agreed to perform my procedure. I did so & I decided that he should use my own tissue (rather than an implant) to rebuild my breast.
On June 24th 2020, I underwent an 8 hour operation which entailed the removal of all my breast tissue & the harvesting of tissue from my belly to form a new breast. They removed another 4.5cm malignant phyllodes tumour as well as a 1.5cm benign tumour at the top of my breast.
The operation went very well & though the recovery was absolutely agonizing & slow, I remain very grateful to my surgeon & the German health care system.
At the end of July, I discovered yet another lump in the exact same position where the small benign tumour (which they had removed in June) had been.
For weeks, my surgeon assured me that this was just a water deposit. My physiotherapist, however, assured me that it wasn't & suggested that I return to the specialist for a thorough exam.
In mid-Aug, I asked my surgeon to please remove the water deposit which he attempted to do but couldn't. He then took a biopsy which, to the amazement all us all, determined that this, too, was a malignant tumour.
Days later (on Aug 28th 2020), I underwent emergency surgery to remove this small tumor. Again, the operation went well.
Following the very unexpected & rapid return of another tumour, both of my surgeons recommended that I get a PET-SCAN to determine whether this phyllodes tumour had spread to other parts of my body.
Despite an extremely well-written document by my surgeon which states that I have an unusual & aggressive phyllodes tumour, my health insurance company has repeatedly refused to pay for this scan. Neither my surgeon nor anyone I speak to understands why they refuse to pay for it as it really is a matter of life & death for me.
My surgeon is of the opinion that a PET SCAN is the only diagnostic tool which can determine whether this rare type of cancer has spread elsewhere in my body. Aside from operations to remove such a tumour, there are no other known treatments for malignant phyllodes tumours.
I have since found 2 other small lumps in my left breast. My last exam was on Oct 15th 2020 for one of these lumps. My surgeon believes it is scar tissue. Just a few days later, I found yet another small lump. My next appointment on Nov 10th 2020 at which time I will request a biopsy for both of these growths.
I have since decided to call when my surgeon is back in the office on Nov 2nd to request an emergency appointment for next week.
According to a Swiss oncology article, in 20% of cases where patients have had such a tumour, it has spread to other parts of the body, resulting in death.
It is for this reason that I've turned to you for support.
I realize that during this pandemic, many don't have the financial resources to offer me support, however, no amount is too small (or large) & I remain grateful for anything you can offer (if you don't have money, even a lovely note would really brighten my day & make me feel less alone...)
Much love,
Patricia
As some of you know, I first found a lump in my left breast in April 2019.
In May, I promptly went to the specialist who sent me for a mammogram & an ultrasound which discovered something suspicious. In June 2019, I had various biopsies (including a vacuum biopsy). All of these tests at that time said that the tumour I had was benign.
However, over the summer, the tumour grew substantially (rapid growth is common in phyllodes tumours) so I returned for an examination at which point my surgeon said that it had to be removed.
On October 16th 2019, a 5cm in diameter phyllodes tumour (only 1% of all breast cancer tumours are phyllodes tumours & of these about 80% are benign) was removed from my left breast. Several samples were taken & sent to two different labs to determine the exact nature of the tumour.
On my birthday, Nov 4th 2019, I received a call from my surgeon that although rare, I had a malignant phyllodes tumour.
Two days later, on Nov 6th, they removed a margin in the hope that another such tumor wouldn't emerge. The operation went well.
Following this in Dec 2019, I had a CT scan & a full body skeletal scan which determined that the cancer had not yet spread. I went into the holiday season very hopeful that all would be well.
Unfortunately, in April 2020, I found another lump near the location of the first tumour. I promptly went to my surgeon for an exam. He said that he thought it was scar tissue but due to the unusual nature of phyllodes tumours, he recommended an MRI.
On June 4th, in the middle of Covid-19, I wore a mask while lying on my belly for 20 of the longest minutes of my life during this MRI.
A few days later, my surgeon informed me that the tumour had returned & that I needed to have a masectomy. He suggested that I consult with one of Germany's top oncologists & plastic surgeons who had agreed to perform my procedure. I did so & I decided that he should use my own tissue (rather than an implant) to rebuild my breast.
On June 24th 2020, I underwent an 8 hour operation which entailed the removal of all my breast tissue & the harvesting of tissue from my belly to form a new breast. They removed another 4.5cm malignant phyllodes tumour as well as a 1.5cm benign tumour at the top of my breast.
The operation went very well & though the recovery was absolutely agonizing & slow, I remain very grateful to my surgeon & the German health care system.
At the end of July, I discovered yet another lump in the exact same position where the small benign tumour (which they had removed in June) had been.
For weeks, my surgeon assured me that this was just a water deposit. My physiotherapist, however, assured me that it wasn't & suggested that I return to the specialist for a thorough exam.
In mid-Aug, I asked my surgeon to please remove the water deposit which he attempted to do but couldn't. He then took a biopsy which, to the amazement all us all, determined that this, too, was a malignant tumour.
Days later (on Aug 28th 2020), I underwent emergency surgery to remove this small tumor. Again, the operation went well.
Following the very unexpected & rapid return of another tumour, both of my surgeons recommended that I get a PET-SCAN to determine whether this phyllodes tumour had spread to other parts of my body.
Despite an extremely well-written document by my surgeon which states that I have an unusual & aggressive phyllodes tumour, my health insurance company has repeatedly refused to pay for this scan. Neither my surgeon nor anyone I speak to understands why they refuse to pay for it as it really is a matter of life & death for me.
My surgeon is of the opinion that a PET SCAN is the only diagnostic tool which can determine whether this rare type of cancer has spread elsewhere in my body. Aside from operations to remove such a tumour, there are no other known treatments for malignant phyllodes tumours.
I have since found 2 other small lumps in my left breast. My last exam was on Oct 15th 2020 for one of these lumps. My surgeon believes it is scar tissue. Just a few days later, I found yet another small lump. My next appointment on Nov 10th 2020 at which time I will request a biopsy for both of these growths.
I have since decided to call when my surgeon is back in the office on Nov 2nd to request an emergency appointment for next week.
According to a Swiss oncology article, in 20% of cases where patients have had such a tumour, it has spread to other parts of the body, resulting in death.
It is for this reason that I've turned to you for support.
I realize that during this pandemic, many don't have the financial resources to offer me support, however, no amount is too small (or large) & I remain grateful for anything you can offer (if you don't have money, even a lovely note would really brighten my day & make me feel less alone...)
Much love,
Patricia
Organizer
Patricia Forbes
Organizer
Bielefeld, Nordrhein-Westfalen