Chris,
Thank you for your response. I found out that you were right that other hospitals do have PET scans they just all don't have access to the required tracer for the Fluor estradiol PET Scan.
I am very concerned. I had a thoracic spine MRI that showed many lesions so I can't help but wonder how the rest of my spine looks. My scan anxiety is pretty high. I am trying to stay calm, but it is so difficult.
Chris, how are you doing? What was the result of your test?
I saw my radiation oncologist and told her my back was bothering me, so she ordered a thoracic spine MRI. I had the MRI today and then I drove straight home which took me 5 minutes. I got home and before I could sit down, the radiation oncologist called and told me that I have lesions on my spine. One was a small hemangioma and 4 other tumors on 4 other vertebrae they are not sure of. The MRI report says that they could be atypical hemangiomas, but metastatic disease can't be ruled out. She immediately called my breast oncologist, and they are sending me to another state to have a pet scan radionuclide. Apparently, no hospital in my large metropolitan area including a teaching hospital has this equipment. Hopefully this isn't metastasis. I am concerned because my first breast cancer in 2020 had perineural invasion into a large nerve.
Have any of you had a Pet Scan radionuclide? If so, could you tell me what to expect?
Yes, I have had his test, although I am skeptical that no one has it. I would believe that the wait time is too long though. I have had my doctor call imaging centers and say this wait is unacceptable can’t you do something sooner, eventually sending me on a journey to get it in a timely fashion.
The test did not FEEL any different than an MRI with contrast. Although it really is so much cooler than that.
They inject a radioactive tracer attached to a sugar molecule (cancer loves sugar) then do the scanning. It isn’t as confining as the tube but takes longer.
It is really amazing to see the scans and how cancer just glows orange, maybe I should not be so excited about my cancer on a screen, but I am fascinated by this.
It is pain free, and less issues with the tracer than the contrast for an MRI.
How are feeling? Are you managing the scan anxiety ok?
I saw my radiation oncologist and told her my back was bothering me, so she ordered a thoracic spine MRI. I had the MRI today and then I drove straight home which took me 5 minutes. I got home and before I could sit down, the radiation oncologist called and told me that I have lesions on my spine. One was a small hemangioma and 4 other tumors on 4 other vertebrae they are not sure of. The MRI report says that they could be atypical hemangiomas, but metastatic disease can't be ruled out. She immediately called my breast oncologist, and they are sending me to another state to have a pet scan radionuclide. Apparently, no hospital in my large metropolitan area including a teaching hospital has this equipment. Hopefully this isn't metastasis. I am concerned because my first breast cancer in 2020 had perineural invasion into a large nerve.
Have any of you had a Pet Scan radionuclide? If so, could you tell me what to expect?
@katrina123
Hi there - I’m so sorry to hear of your new development. I haven’t had a Pet Scan so I can’t help. I wish you the best. Please keep us updated.
I saw my radiation oncologist and told her my back was bothering me, so she ordered a thoracic spine MRI. I had the MRI today and then I drove straight home which took me 5 minutes. I got home and before I could sit down, the radiation oncologist called and told me that I have lesions on my spine. One was a small hemangioma and 4 other tumors on 4 other vertebrae they are not sure of. The MRI report says that they could be atypical hemangiomas, but metastatic disease can't be ruled out. She immediately called my breast oncologist, and they are sending me to another state to have a pet scan radionuclide. Apparently, no hospital in my large metropolitan area including a teaching hospital has this equipment. Hopefully this isn't metastasis. I am concerned because my first breast cancer in 2020 had perineural invasion into a large nerve.
Have any of you had a Pet Scan radionuclide? If so, could you tell me what to expect?
FYI........I just found out that the other hospitals do have the PET Scans however they just don't have the tracer that will be used in my estradiol Pet scan.
I saw my radiation oncologist and told her my back was bothering me, so she ordered a thoracic spine MRI. I had the MRI today and then I drove straight home which took me 5 minutes. I got home and before I could sit down, the radiation oncologist called and told me that I have lesions on my spine. One was a small hemangioma and 4 other tumors on 4 other vertebrae they are not sure of. The MRI report says that they could be atypical hemangiomas, but metastatic disease can't be ruled out. She immediately called my breast oncologist, and they are sending me to another state to have a pet scan radionuclide. Apparently, no hospital in my large metropolitan area including a teaching hospital has this equipment. Hopefully this isn't metastasis. I am concerned because my first breast cancer in 2020 had perineural invasion into a large nerve.
Have any of you had a Pet Scan radionuclide? If so, could you tell me what to expect?
The CHEK2 connection between us is interesting since we both have LGASC. My oncology meeting is in a few weeks. I’ll share any insights I learn. By the way, do you have a genetic counselor in addition to an oncologist?
@susan7656
That is very helpful information. And I’m still so curious about the LGASC and CHEK2 mutation. I see my oncologist in December.
We will have to continue to share what we find out.
Continue to rest and heal!
The CHEK2 connection between us is interesting since we both have LGASC. My oncology meeting is in a few weeks. I’ll share any insights I learn. By the way, do you have a genetic counselor in addition to an oncologist?
@mchler73 - the pathology report for the right breast only said “atypical cells.” I don’t think it is known what type of cancer those were going to evolve to. However, I will ask my oncologist when I have my next appointment.
I personally did not request the nipple sparing procedure. I chose a bilateral mastectomy because I did not want a lumpectomy and radiation. I did not want the surveillance that would have been required had I only had a lumpectomy. I did not want to constantly worry about the cancer reoccurring in either breast. And the breast surgeon did say that for her triple negative patients, she almost always recommended the bilateral mastectomy (but would have been willing to do the lumpectomy and radiation if I was intent on breast conservation, which I was not).
The nipple sparing mastectomy was recommended by the breast surgeon and the plastic surgeon. They said, however, that if there were any cancer cells in the nipples, that the nipples would not be spared. I understood that and had to sign consent before surgery. I did not let myself get too focused on the nipple sparing aspect. I honestly just wanted the bilateral and the reconstruction. If the nipples were spared, great. But I was not hung up on this in any way.
However, no cancer in the nipples was found during the mastectomy. Only the one small tumor was found and it was located away from the areola and the nipple.
I do meet with the breast surgeon next week and will inquire about the chance of it coming back in the nipples and I will let you know what answer is given.
@susan7656
That is very helpful information. And I’m still so curious about the LGASC and CHEK2 mutation. I see my oncologist in December.
We will have to continue to share what we find out.
Continue to rest and heal!
@susan7656
I am so glad it was caught early and the procedure went well!
Do they think the atypical cells in the other breast could be LGASC? I was told it is rare to have it in both breasts, so I’m curious as to what they thought.
Also, I was told that cancer could come back in the nipples. Did they say that to you when you wanted nipple sparing?
@mchler73 - the pathology report for the right breast only said “atypical cells.” I don’t think it is known what type of cancer those were going to evolve to. However, I will ask my oncologist when I have my next appointment.
I personally did not request the nipple sparing procedure. I chose a bilateral mastectomy because I did not want a lumpectomy and radiation. I did not want the surveillance that would have been required had I only had a lumpectomy. I did not want to constantly worry about the cancer reoccurring in either breast. And the breast surgeon did say that for her triple negative patients, she almost always recommended the bilateral mastectomy (but would have been willing to do the lumpectomy and radiation if I was intent on breast conservation, which I was not).
The nipple sparing mastectomy was recommended by the breast surgeon and the plastic surgeon. They said, however, that if there were any cancer cells in the nipples, that the nipples would not be spared. I understood that and had to sign consent before surgery. I did not let myself get too focused on the nipple sparing aspect. I honestly just wanted the bilateral and the reconstruction. If the nipples were spared, great. But I was not hung up on this in any way.
However, no cancer in the nipples was found during the mastectomy. Only the one small tumor was found and it was located away from the areola and the nipple.
I do meet with the breast surgeon next week and will inquire about the chance of it coming back in the nipples and I will let you know what answer is given.
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Chris,
Thank you for your response. I found out that you were right that other hospitals do have PET scans they just all don't have access to the required tracer for the Fluor estradiol PET Scan.
I am very concerned. I had a thoracic spine MRI that showed many lesions so I can't help but wonder how the rest of my spine looks. My scan anxiety is pretty high. I am trying to stay calm, but it is so difficult.
Chris, how are you doing? What was the result of your test?
Katrina123
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1 ReactionYes, I have had his test, although I am skeptical that no one has it. I would believe that the wait time is too long though. I have had my doctor call imaging centers and say this wait is unacceptable can’t you do something sooner, eventually sending me on a journey to get it in a timely fashion.
The test did not FEEL any different than an MRI with contrast. Although it really is so much cooler than that.
They inject a radioactive tracer attached to a sugar molecule (cancer loves sugar) then do the scanning. It isn’t as confining as the tube but takes longer.
It is really amazing to see the scans and how cancer just glows orange, maybe I should not be so excited about my cancer on a screen, but I am fascinated by this.
It is pain free, and less issues with the tracer than the contrast for an MRI.
How are feeling? Are you managing the scan anxiety ok?
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Like -
Helpful -
Hug
3 Reactions@katrina123
Hi there - I’m so sorry to hear of your new development. I haven’t had a Pet Scan so I can’t help. I wish you the best. Please keep us updated.
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1 ReactionFYI........I just found out that the other hospitals do have the PET Scans however they just don't have the tracer that will be used in my estradiol Pet scan.
Katrina123
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Helpful -
Hug
1 ReactionI saw my radiation oncologist and told her my back was bothering me, so she ordered a thoracic spine MRI. I had the MRI today and then I drove straight home which took me 5 minutes. I got home and before I could sit down, the radiation oncologist called and told me that I have lesions on my spine. One was a small hemangioma and 4 other tumors on 4 other vertebrae they are not sure of. The MRI report says that they could be atypical hemangiomas, but metastatic disease can't be ruled out. She immediately called my breast oncologist, and they are sending me to another state to have a pet scan radionuclide. Apparently, no hospital in my large metropolitan area including a teaching hospital has this equipment. Hopefully this isn't metastasis. I am concerned because my first breast cancer in 2020 had perineural invasion into a large nerve.
Have any of you had a Pet Scan radionuclide? If so, could you tell me what to expect?
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Helpful -
Hug
3 Reactions@mchler73 No, I do not have one at this time. I will ask my oncologist if that addition would be of value.
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1 Reaction@susan7656
I don’t have a genetic counselor. Do you?
My new oncologist brought it up at my last appointment.
The CHEK2 connection between us is interesting since we both have LGASC. My oncology meeting is in a few weeks. I’ll share any insights I learn. By the way, do you have a genetic counselor in addition to an oncologist?
@susan7656
That is very helpful information. And I’m still so curious about the LGASC and CHEK2 mutation. I see my oncologist in December.
We will have to continue to share what we find out.
Continue to rest and heal!
-
Like -
Helpful -
Hug
1 Reaction@mchler73 - the pathology report for the right breast only said “atypical cells.” I don’t think it is known what type of cancer those were going to evolve to. However, I will ask my oncologist when I have my next appointment.
I personally did not request the nipple sparing procedure. I chose a bilateral mastectomy because I did not want a lumpectomy and radiation. I did not want the surveillance that would have been required had I only had a lumpectomy. I did not want to constantly worry about the cancer reoccurring in either breast. And the breast surgeon did say that for her triple negative patients, she almost always recommended the bilateral mastectomy (but would have been willing to do the lumpectomy and radiation if I was intent on breast conservation, which I was not).
The nipple sparing mastectomy was recommended by the breast surgeon and the plastic surgeon. They said, however, that if there were any cancer cells in the nipples, that the nipples would not be spared. I understood that and had to sign consent before surgery. I did not let myself get too focused on the nipple sparing aspect. I honestly just wanted the bilateral and the reconstruction. If the nipples were spared, great. But I was not hung up on this in any way.
However, no cancer in the nipples was found during the mastectomy. Only the one small tumor was found and it was located away from the areola and the nipple.
I do meet with the breast surgeon next week and will inquire about the chance of it coming back in the nipples and I will let you know what answer is given.
-
Like -
Helpful -
Hug
1 Reaction