Hi
Well, our hospitals here have had a data breach. So all their systems have been down for 4 months. So I don't think I can get it from anyone but my surgeon.
Hi, dear @sue417 - I am sorry to hear your hospital was hacked. Something like that is bound to make you feel uneasy.
It is likely that the hospital has your records; they would have received them via messenger services or regular mail if their systems were down. You could check with the hospital and see. Also, the surgeon's office can give you the pathology report; before your scheduled check-up. That is, of course, if you want the report. Perhaps you want to wait for your check-up, and that's totally fine.
No, not yet. I have an mri on 12/26 and appt with surgeon on 1/9. The waiting is excruciating. Trying to manage my anxiety and my family’s anxiety. Thanks for asking.
Hi dear @chm64 - How did the MRI go? Anything else found? I do understand your and your family's anxiety. It is totally normal, but it doesn't make it any easier, does it?
Thanks for checking in. No MRI results yet. Still feel in the dark. The radiologist was pleasant but couldn’t tell me anything. Waiting for appt on the 9th. Is my experience of waiting with no feedback typical?
Hello @flowergal - I am sorry to hear about the issues you have been having. Particularly your back fracture! Do you have Osteopenia or Osteoporosis?
As you have already found out, radiation can cause discomfort in the breast; however, the back fracture can also affect different muscles. These are all things you may want to bring up with your surgeon, but also with your GP. Are you seeing an orthopedic doctor for the back? You can ask him/her if and how the fracture may affect the rest of your body. Your PT specialist may also be a good source of information.
Thank you so much for your reply. I do see the oncologist next week. I did see an Ortho neuro surgeon regarding my back. Thankfully PT has made it so much better.
I do have osteopenia so will be doing a Dexa scan this summer to check on bone loss.
It's a lot to deal with but the PT exercises have distracted me from the breast pain. The nurse practitioner at radiology thought it was from the treatments.
Thanks for checking in. No MRI results yet. Still feel in the dark. The radiologist was pleasant but couldn’t tell me anything. Waiting for appt on the 9th. Is my experience of waiting with no feedback typical?
Hello @chm64 - Yes, unfortunately, it does seem to be typical. However, if you want to have your results, all you have to do is request the document(s). It does seem too easy, doesn't it? Well, actually it is easy! By law (HIPAA), we all have a right to most of our medical records. Such as those you would generally want:
- https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html
I get all my test results, including Breast MRI results, the very next day, and yes, I use this law. I just have to fill in and sign a HIPAA release form and I receive the records immediately. No wait. Each office/hospital has its own forms.
Thank you so much for your reply. I do see the oncologist next week. I did see an Ortho neuro surgeon regarding my back. Thankfully PT has made it so much better.
I do have osteopenia so will be doing a Dexa scan this summer to check on bone loss.
It's a lot to deal with but the PT exercises have distracted me from the breast pain. The nurse practitioner at radiology thought it was from the treatments.
@flowergal - You are on the right track; do ask all of them - Remember that the oncologist can change your Aromatase Inhibitor, or change your dose - IF Anastrozole is a contributor to your breast pain. I have had/have breast pain, and my MRIs, Diagnostic Mammograms, and Breast Ultrasounds do not show any reoccurrence of cancer. Like you, I also have been told by all the doctors that it is one of the side effects of radiation treatments.
Are you being followed by an Endocrinologist? If not, you may want to find a good one to help you with your osteopenia, particularly since you have had a back fracture AND you are taking Anastrozole.
Hello @prc73. I had a partial mastectomy on the right, with immediate reconstruction. My left breast (no cancer) was reconstructed at the same time, to match the smaller size of the right one. The aureolas with the nipples were removed and reattached on both breasts.
My plastic surgeon told me ahead of time that I wouldn't have any sensations for a while, but she hoped I would regain some of it, in time. For a long time, I had NO sensations on the aureola or nipples. Also, NO sensations on the skin of either breast. But I slowly noticed improvements. It took a long time (over 2 years), but I have full sensations now. So, yes, the sensation returned to the breasts, including the aureolas and nipples.
I was truly surprised this happened! I couldn't be more grateful to my plastic surgeon!
Are you contemplating a full mastectomy with reconstruction? Or did you have one already?
Hi they suggest full mastectomy on one breast and try to match the other . I don’t have the gene . However the last plastic surgeon I saw said I am very high risk due to obesity and should try to lose 40 pounds before surgery . Otherwise I would have to go flat chested .
Hi they suggest full mastectomy on one breast and try to match the other . I don’t have the gene . However the last plastic surgeon I saw said I am very high risk due to obesity and should try to lose 40 pounds before surgery . Otherwise I would have to go flat chested .
Hi @prc73 - You probably feel very anxious and concerned about what to do. I understand! Most of us have or are feeling that way. You may even find that you make a decision only to begin to doubt it shortly after making it. It's OK to feel unsure, or ambivalent.
The stress of the diagnosis and the weight of the decisions to be made are truly heavy; however, I would say that the main thing you would want to decide right now is when to have your DCIS surgery. Since your cancer is Grade 3, I wouldn't wait too long. Reconstruction is something that can be done at any time. You don't need to do it immediately.
The reason your surgeon wants to do a mastectomy, as you may know, is due to the large area covered by your DCIS. When it is multifocal and located in more than one quadrant of the breast, the surgeon can't do a lumpectomy or a partial mastectomy.
"Nipple-sparing mastectomy. A nipple- or areola-sparing mastectomy involves removing the breast tissue only, sparing the skin, nipple, and areola. Breast reconstruction is performed immediately afterward."
You mention not having "the gene". Were you given a genetic test covering ALL the potential cancer-causing inherited genetic mutations, or just the mutations in the BRACA1 and 2?
I had a multigene panel of 85 genes. That's how I found I do have an inherited genetic mutation, though NOT the BRACA1 and 2. If you have NOT done a multigene test, I would encourage you to do so. The cost is NOT high. I paid $300 for the multigene test I mentioned - A small amount to pay for peace of mind!
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Hi, dear @sue417 - I am sorry to hear your hospital was hacked. Something like that is bound to make you feel uneasy.
It is likely that the hospital has your records; they would have received them via messenger services or regular mail if their systems were down. You could check with the hospital and see. Also, the surgeon's office can give you the pathology report; before your scheduled check-up. That is, of course, if you want the report. Perhaps you want to wait for your check-up, and that's totally fine.
HUGS!
D.
Hi dear @chm64 - How did the MRI go? Anything else found? I do understand your and your family's anxiety. It is totally normal, but it doesn't make it any easier, does it?
Please let us know how you are.
HUGS!
D
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3 ReactionsThanks for checking in. No MRI results yet. Still feel in the dark. The radiologist was pleasant but couldn’t tell me anything. Waiting for appt on the 9th. Is my experience of waiting with no feedback typical?
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Helpful -
Hug
2 ReactionsThank you so much for your reply. I do see the oncologist next week. I did see an Ortho neuro surgeon regarding my back. Thankfully PT has made it so much better.
I do have osteopenia so will be doing a Dexa scan this summer to check on bone loss.
It's a lot to deal with but the PT exercises have distracted me from the breast pain. The nurse practitioner at radiology thought it was from the treatments.
Thanks again
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Like -
Helpful -
Hug
2 ReactionsHello @chm64 - Yes, unfortunately, it does seem to be typical. However, if you want to have your results, all you have to do is request the document(s). It does seem too easy, doesn't it? Well, actually it is easy! By law (HIPAA), we all have a right to most of our medical records. Such as those you would generally want:
- https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html
I get all my test results, including Breast MRI results, the very next day, and yes, I use this law. I just have to fill in and sign a HIPAA release form and I receive the records immediately. No wait. Each office/hospital has its own forms.
Hope this helps!
HUGS,
D.
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2 ReactionsThank you!! I will request my results tomorrow!
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2 Reactions@flowergal - You are on the right track; do ask all of them - Remember that the oncologist can change your Aromatase Inhibitor, or change your dose - IF Anastrozole is a contributor to your breast pain. I have had/have breast pain, and my MRIs, Diagnostic Mammograms, and Breast Ultrasounds do not show any reoccurrence of cancer. Like you, I also have been told by all the doctors that it is one of the side effects of radiation treatments.
Are you being followed by an Endocrinologist? If not, you may want to find a good one to help you with your osteopenia, particularly since you have had a back fracture AND you are taking Anastrozole.
HUGS!
D.
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Like -
Helpful -
Hug
1 Reaction@chm64 - GREAT! Do let me know how it goes.
HUGS,
D.
Hi they suggest full mastectomy on one breast and try to match the other . I don’t have the gene . However the last plastic surgeon I saw said I am very high risk due to obesity and should try to lose 40 pounds before surgery . Otherwise I would have to go flat chested .
-
Like -
Helpful -
Hug
2 ReactionsHi @prc73 - You probably feel very anxious and concerned about what to do. I understand! Most of us have or are feeling that way. You may even find that you make a decision only to begin to doubt it shortly after making it. It's OK to feel unsure, or ambivalent.
The stress of the diagnosis and the weight of the decisions to be made are truly heavy; however, I would say that the main thing you would want to decide right now is when to have your DCIS surgery. Since your cancer is Grade 3, I wouldn't wait too long. Reconstruction is something that can be done at any time. You don't need to do it immediately.
The reason your surgeon wants to do a mastectomy, as you may know, is due to the large area covered by your DCIS. When it is multifocal and located in more than one quadrant of the breast, the surgeon can't do a lumpectomy or a partial mastectomy.
If you were to decide to have immediate reconstruction, you could choose to have a "Nipple-Sparing" mastectomy (if the nipple and areola are cancer-free):
- https://www.mayoclinic.org/tests-procedures/mastectomy/about/pac-20394670:
"Nipple-sparing mastectomy. A nipple- or areola-sparing mastectomy involves removing the breast tissue only, sparing the skin, nipple, and areola. Breast reconstruction is performed immediately afterward."
You mention not having "the gene". Were you given a genetic test covering ALL the potential cancer-causing inherited genetic mutations, or just the mutations in the BRACA1 and 2?
I had a multigene panel of 85 genes. That's how I found I do have an inherited genetic mutation, though NOT the BRACA1 and 2. If you have NOT done a multigene test, I would encourage you to do so. The cost is NOT high. I paid $300 for the multigene test I mentioned - A small amount to pay for peace of mind!
HUGS,
D