Back in the early 2000s the Pet scan showed a hot area in my lung. I was rushed off for a thoracotomy, had a portion of my lung removed where there was a tumor, but it turned out to be a benign tumor that could have remained there and be followed with CT scans to see if it grew. It turned out to be Valley Fever spores that had lodged in my lung and my body recognized a foreign invader and build cells around it to isolate it. Valley Fever could be detected by a simple blood test which the doctors should have known to give me. It was a very difficult surgery and recuperation because I had residual pain where they cut me for years after.
I also had a metastasis of endometrial cancer. I had surgery and a lot of radiation. This also took quite some time to recuperate because the metastasis was on my outer colon and hip bone. About two years later with much after effects from the colon resection, I was given a Pet scan and was told the hot spot compared to the previous one when the metastasis was first discovered had grown much larger and it was very hot. They said my cancer must be back. That was in 2004. I'm still here and the cancer had not returned. I, however, just was treated for bladder cancer which was a result from the massive amount of radiation I got. After a year of chemo in my bladder monthly, I'm doing fine. The Pet scan is not the be all and end all of tests is my conclusion.
I had the Galleri test recently. I came up negative. I have since had an endoscopy EUS Ultrasound to test for an Insulinoma. They did a biopsy. It came up positive for a neuroendocrine tumor. I go for a PET scan this week.
It's important to mention that Galleri is not a "test" but a "screening." False positives are not uncommon with screening technologies. Mammograms are similarly a "screening" tool. It's why so many of us need follow-up sonograms or MRI, but then do not have cancer. Choosing to use a screening instrument I have to accept that it comes with that temporary anxiety as I wait for the results. Those 2 weeks or so of worry are nothing compared with having a longer, healthier life.
It's important to mention that Galleri is not a "test" but a "screening." False positives are not uncommon with screening technologies. Mammograms are similarly a "screening" tool. It's why so many of us need follow-up sonograms or MRI, but then do not have cancer. Choosing to use a screening instrument I have to accept that it comes with that temporary anxiety as I wait for the results. Those 2 weeks or so of worry are nothing compared with having a longer, healthier life.
I had the Galleri test last spring and got a negative result. I have not had cancer but had some symptoms that could have signaled the presence of cancer. I also had a CT scan which showed nothing but noted a couple of nodules that bear watching.
The Galleri test results were very reassuring.
As a Canadian I had to seek out both tests in the USA and pay out of pocket, as in our healthcare system my symptoms were not ‘serious’ enough to warrant anything further than an ultrasound, for which I had to wait four weeks.
I took a GRAIL test in April 2023. It came back positive for ovarian cancer. My GP ordered both an MRI and a ROMA test. MRI was clean but the CA-125 of the ROMA was just a few points high out of range at 42.
I opted for a complete hysterectomy/oophorectomy which was clean, no cancer found, except for some abnormal cells in the pelvic wash.
My CA-125 did drop to 20 after surgery.
Because no cancer was found, Grail offered a complimentary retest in July, three months after the first test. That one also came back positive for ovarian cancer.
My GP ordered a pet scan and a gastric and pelvic lymph node were noted but of no concern.
By November my CA 125 was 26, still in range, and GRAIL offered yet a third re test, which also came back positive for ovarian cancer. My CA 125 continued to rise and was out of range to 56 by February this year. The fourth complimentary GRAIL was still positive.
By then I had classic symptoms of gas and digestion issues.
Another pet scan was ordered and 8 months since the last scan, the same two lymph nodes were now deemed suspicious for metastatic disease and as well as two more.
I flew to MD Anderson and when the doctor heard GRAIL, sent me home.
I found a local gyno/oncologist who agreed to go in laparoscopically and he removed the suspicious nodes as well as my appendix, omentum and part of the peritoneum. Only two of the lymph nodes had cancer, high grade serous carcinoma stage 3a, (probably originated in a fallopian tube, but wasn’t discovered in any of the three pathologies that were performed from my earlier oophorectomy by John Muir, UCSF and Stanford) My appendix, omentum, peritoneum were all clean, the pelvic wash showed cancer.
I started frontline chemo in July and finished up in October.
I’m brca negative, hrd inconclusive and no maintenance drugs planned.
GRAIL worked for me.
The company said that I’m the only one who has taken their test this many times before finding their cancer. Doctors don’t want to believe the test. Throughout this, I visited doctors at MD Anderson, Mayo, Stanford, City of Hope, Duarte, UCSF as well as my local John Muir and no one believed me or GRAIL.
If doctors believed in GRAIL, maybe they would have taken me seriously and found my cancer before it became advanced?
@debraae
A couple of comments. Thanks for sharing. Undoubtedly, your experience will give others much to think about. Kudos to you for persisting until received an unambiguously clear cancer result in the face of doctors who were skeptics. It is so much easier to want to believe that we don’t have a health issue than to go through all of the procedures that you did …just in case. Today you are alive and well, a wonderful outcome.
A few details about Grail. It is the company that makes the Galleri test. They are pretty much one and the same. The Galleri test is one of a number of new screening tests known as liquid biopsies. These are drawing greater attention from the medical community. It went through independent medical trials at Mayo Clinic (Rochester), so by no means a fly by night, back alley concept to waste your money. It is offered through a number of regional health care systems, most prominently in the west coast states, as well as through a number of functional medical/wellness clinics throughout the USA and now also in Toronto, Canada.
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I had the Galleri test recently. I came up negative. I have since had an endoscopy EUS Ultrasound to test for an Insulinoma. They did a biopsy. It came up positive for a neuroendocrine tumor. I go for a PET scan this week.
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4 ReactionsIt's important to mention that Galleri is not a "test" but a "screening." False positives are not uncommon with screening technologies. Mammograms are similarly a "screening" tool. It's why so many of us need follow-up sonograms or MRI, but then do not have cancer. Choosing to use a screening instrument I have to accept that it comes with that temporary anxiety as I wait for the results. Those 2 weeks or so of worry are nothing compared with having a longer, healthier life.
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Helpful -
Hug
1 ReactionI had the Galleri test last spring and got a negative result. I have not had cancer but had some symptoms that could have signaled the presence of cancer. I also had a CT scan which showed nothing but noted a couple of nodules that bear watching.
The Galleri test results were very reassuring.
As a Canadian I had to seek out both tests in the USA and pay out of pocket, as in our healthcare system my symptoms were not ‘serious’ enough to warrant anything further than an ultrasound, for which I had to wait four weeks.
I took a GRAIL test in April 2023. It came back positive for ovarian cancer. My GP ordered both an MRI and a ROMA test. MRI was clean but the CA-125 of the ROMA was just a few points high out of range at 42.
I opted for a complete hysterectomy/oophorectomy which was clean, no cancer found, except for some abnormal cells in the pelvic wash.
My CA-125 did drop to 20 after surgery.
Because no cancer was found, Grail offered a complimentary retest in July, three months after the first test. That one also came back positive for ovarian cancer.
My GP ordered a pet scan and a gastric and pelvic lymph node were noted but of no concern.
By November my CA 125 was 26, still in range, and GRAIL offered yet a third re test, which also came back positive for ovarian cancer. My CA 125 continued to rise and was out of range to 56 by February this year. The fourth complimentary GRAIL was still positive.
By then I had classic symptoms of gas and digestion issues.
Another pet scan was ordered and 8 months since the last scan, the same two lymph nodes were now deemed suspicious for metastatic disease and as well as two more.
I flew to MD Anderson and when the doctor heard GRAIL, sent me home.
I found a local gyno/oncologist who agreed to go in laparoscopically and he removed the suspicious nodes as well as my appendix, omentum and part of the peritoneum. Only two of the lymph nodes had cancer, high grade serous carcinoma stage 3a, (probably originated in a fallopian tube, but wasn’t discovered in any of the three pathologies that were performed from my earlier oophorectomy by John Muir, UCSF and Stanford) My appendix, omentum, peritoneum were all clean, the pelvic wash showed cancer.
I started frontline chemo in July and finished up in October.
I’m brca negative, hrd inconclusive and no maintenance drugs planned.
GRAIL worked for me.
The company said that I’m the only one who has taken their test this many times before finding their cancer. Doctors don’t want to believe the test. Throughout this, I visited doctors at MD Anderson, Mayo, Stanford, City of Hope, Duarte, UCSF as well as my local John Muir and no one believed me or GRAIL.
If doctors believed in GRAIL, maybe they would have taken me seriously and found my cancer before it became advanced?
-
Like -
Helpful -
Hug
1 Reaction@debraae
A couple of comments. Thanks for sharing. Undoubtedly, your experience will give others much to think about. Kudos to you for persisting until received an unambiguously clear cancer result in the face of doctors who were skeptics. It is so much easier to want to believe that we don’t have a health issue than to go through all of the procedures that you did …just in case. Today you are alive and well, a wonderful outcome.
A few details about Grail. It is the company that makes the Galleri test. They are pretty much one and the same. The Galleri test is one of a number of new screening tests known as liquid biopsies. These are drawing greater attention from the medical community. It went through independent medical trials at Mayo Clinic (Rochester), so by no means a fly by night, back alley concept to waste your money. It is offered through a number of regional health care systems, most prominently in the west coast states, as well as through a number of functional medical/wellness clinics throughout the USA and now also in Toronto, Canada.