What kind of breast cancer did you who is taking anastrozole? and how old were you.
I have been on anastrozole since Aug of 22 and still cancer free. I have a MRI coming up in a fews weeks and I anm worries about that.
I did have 6 weeks of radiation after surgery because I have 2 node positive had clear margins after my surgery
@chickenmom10 Did you have chemotherapy? I saw that you have Oncotype 20 , the same I have and doctors are still doubting if I have benefit from it or not . They are more likely to go only with hormonal therapy.
No chem. But asked about verzenio I opt due to too many side effects.
And only gave me 4 percent I am at 86 percent to the good and it would bring to 90. Not worth it to me. Between dieting and walking they said it was beneficial for me. So that’s what I am doing at this time
Glad I found someone with the same journey
No chem. But asked about verzenio I opt due to too many side effects.
And only gave me 4 percent I am at 86 percent to the good and it would bring to 90. Not worth it to me. Between dieting and walking they said it was beneficial for me. So that’s what I am doing at this time
Glad I found someone with the same journey
I had a lumpectomy. No implant, but I noticed that the radiated breast became swollen and harden a week after radiation and lasted for a few months. It eventually went away. I guess the apoptosis continues long after the last session.
Hi everyone,
Just wanted to let you all know that I saw a Naturopathic Oncologist today and she got my MRI moved up from August 30th to the 16th. So that’s good news.
She did a breast exam and said she felt 2 lumps (I can also feel 2 now). She said one felt long/maybe oval and the other felt round. Not sure what that really means but she did say that if the MRI can’t definitively say what they are, she will order a biopsy.
Just wanted to give an update!
Thanks!
Thanks for sharing and wondering as you are 5 yrs out and a critical time for us with lobular cancer. Do you have annual MRI's - I have very dense breasts and have had to beg for annual from my oncologist at Dana Farber but I have insisted! However many lobulars spread to bones and I'm hopeful that liquid biopsies can be another tool. Have you had any blood work since your diagnosis - they can match blood to your tumor markers and see a lot!
I have MLBC . Had several reccurrences over the course of 12 yrs. Double mastectomy on advice fr surgeon . That surgeon left 1 or 2 "rogue" cells ( she told me that was found, in lymph node area it was not a great concern to her. :(:( I felt a lump there a few yrs later , I had VerY substandard care--only saw an oncologist nurse was and she was very casual and said "Oh I think that's scar tissue" I naively took her word for it, then another oncologist a few yrs later said the same. I finally got someone to take it seriously and biopsy the grown lump. Positive, but not in a node and it was cut out & rad. , but it did go to a bone--Vertabrae L5---discovered 3 & 4 yrs later after another lump in left armpit area again, surgery & strong 5 blast sessions of rad-- disfigured more but not in node 🙂 and some lung sclerosis in that upper region, rhey say its typical. Had PA wanting to catscan my spine-'22 there is a lesion they saw but thought it was a bone island! all docs agreed late '23 ...scary biopsy: Drill into muscle/fat to get 3 core samples. Positive for MBLCk. Lobular IS there evidence that Lobular goes to bone (Is it a high % compared to Ductile? IS that statistic(s) available to look at ? Is it your D Farber Oncologist who said it . There's more research these days from Oncology staff.about lobular.BC
I'm 64 and was diagnosed with left breast invasive ductal carcinoma (ER+ HER2-) in Sept. 2020. It was caught early. Decided on bilateral mastectomy (personal choice and not something my breast specialist suggested). 23 lymph nodes removed with 3 showing cancer. I had 6 weeks of radiation but no chemo since Mammaprint showed no benefit from it. Started taking Letrozole (aromatase inhibitor) and took it for 3 years with regular 6 month exams from breast surgeon and oncologist. Labs were monitored and my markers never changed. In July 2023 I started experiencing some lower back pain. PCP prescribed steroids and muscle relaxers, along with stretching, thinking that I had probably pulled something in my lower back. Just happened to have one of my regular visits scheduled in August to see my breast specialist and she suggested having some scans run just to be safe. Scans came back kind of questionable so she scheduled a PET scan. Turns out my breast cancer had metastasized to my bones and was especially present in my spine. The PET scan showed a kind of shotgun effect with most bones in my body being affected to some degree. Started new treatment plan in October after conferring with my oncologist and getting a 2nd opinion at MD Anderson. That treatment plan consisted of Verzenio 150 mg with 2 injections of Fulvestrant (estrogen receptor antagonist) and one injection of Xgeva (bone builder) once a month following the initial 3 bi-weekly injections during the load-up period. Had a few side effects with the worst being diarrhea. It became chronic and eventually caused ulcerative colitis. Even though the treatment plan was working well and had stopped the cancer from advancing I had to stop the Verzenio after almost 8 months and start taking anti-inflammatory/steroid meds for my UC. During that time I had labs and injections every month, PET scans every 3 months and opted in for 2 kyphoplasty procedures to help reduce the pain in my spine, both lumbar and thoracic regions. Had issues with insurance authorizing new medication (Ibrance) so I just started taking Kisqali last week after being off Verzenio for 5weeks. Verzenio, Ibrance & Kisqali are all CDK4/6 inhibitors so the Kisqali should continue to work, but the side effects are a little different as is the dosage requirement. All that being said, I feel better than I did 7-8 months ago and the pain I have is tolerable on the days that it bothers me. I pray the Kisqali will continue to do the job that the Verzenio did (and without diarrhea), but only time will tell - next PET scan will be in October. With all that being said, YES, breast cancer can metastasize even while on aromatase inhibitors. Make sure your care team uses scans in addition to lab work and physical exams as often as they will allow. My care team told me that wasn't necessary and that the cancer markers in my blood would be the tell-tale sign of advancement. Didn't happen that way and I ended up with stage IV breast cancer. I moved all my care and treatments to MD Anderson and I travel 4 hours to get there. Yes, it's inconvenient, but I feel I'm in much better hands than I was initially. Educate yourself and don't ignore what your body or your mind tells you. Despite all the negatives, there are many treatment plans that can work. Everyone's situation is unique. I hope your cancer journey is the best it can be and you find the care you need! Prayers to all!
Hi
I am truly sorry you went through hurdles to get to the place you needed to be at. I am glad Verzenio is working for you. Of all inhibitors, I think Verzenio is most promising so far. I also think getting MRI biannual is important. I know doctors try to make it otherwise but I believe it is. I think the patient has to stay on top of their own health and keep researching for what is best treatment and medication and push for them. Best wishes.
Hi
I am truly sorry you went through hurdles to get to the place you needed to be at. I am glad Verzenio is working for you. Of all inhibitors, I think Verzenio is most promising so far. I also think getting MRI biannual is important. I know doctors try to make it otherwise but I believe it is. I think the patient has to stay on top of their own health and keep researching for what is best treatment and medication and push for them. Best wishes.
To tag onto @judypark001 comments about watching out for your own health -
I believe we need to get breast cancer specialists to use disease free survival as the end goal not just survival. If the focus is on survival then it is not imperative to find a cancer at the very earliest stages (which involves expense and time using MRI). Research shows that with current cancer treatments 97.5% will survive*. If survival is the goal, 97.5% sounds pretty good. I could have multiple recurrences and metastasis that is treatable until I die of something else (I then qualify as meeting the goal of surviving cancer). But I don’t want another cancer even if it is survivable. We want disease free survival.
Is it the doctor’s job to help you survive to your oldest age? Or, is it the doctor’s job to help you live disease free for as long as possible?
Insurance companies have a lot to do with the extent of the care we receive. If insurance won’t pay for it, the doctor doesn’t get paid. Insurance companies make decisions on cost. I’m guessing it must be cheaper to treat a few women with recurring cancer than it is to do annual MRIs on every female - otherwise you can be sure they would be pushing us all to get MRIs if it saved them money.
To be honest, we choose our insurance company and then want our doctors to provide care not covered by the insurance we chose. I don’t expect my doctor to work for free - so really it is up to me to pay for insurance that will pay my doctor.
To get better care it’s the insurance companies that must change, and increase their coverage to provide disease free survival. Unfortunately we are pretty powerless to force a change as individuals. Maybe we can raise awareness, though, that the goal should be disease free survival. Many who have never had cancer don’t understand the difference.
I suggest when we talk to our doctor’s we are clear that our goal is disease free survival DFS, or disease free intervals DFI (with extended time between intervals).
I'm 64 and was diagnosed with left breast invasive ductal carcinoma (ER+ HER2-) in Sept. 2020. It was caught early. Decided on bilateral mastectomy (personal choice and not something my breast specialist suggested). 23 lymph nodes removed with 3 showing cancer. I had 6 weeks of radiation but no chemo since Mammaprint showed no benefit from it. Started taking Letrozole (aromatase inhibitor) and took it for 3 years with regular 6 month exams from breast surgeon and oncologist. Labs were monitored and my markers never changed. In July 2023 I started experiencing some lower back pain. PCP prescribed steroids and muscle relaxers, along with stretching, thinking that I had probably pulled something in my lower back. Just happened to have one of my regular visits scheduled in August to see my breast specialist and she suggested having some scans run just to be safe. Scans came back kind of questionable so she scheduled a PET scan. Turns out my breast cancer had metastasized to my bones and was especially present in my spine. The PET scan showed a kind of shotgun effect with most bones in my body being affected to some degree. Started new treatment plan in October after conferring with my oncologist and getting a 2nd opinion at MD Anderson. That treatment plan consisted of Verzenio 150 mg with 2 injections of Fulvestrant (estrogen receptor antagonist) and one injection of Xgeva (bone builder) once a month following the initial 3 bi-weekly injections during the load-up period. Had a few side effects with the worst being diarrhea. It became chronic and eventually caused ulcerative colitis. Even though the treatment plan was working well and had stopped the cancer from advancing I had to stop the Verzenio after almost 8 months and start taking anti-inflammatory/steroid meds for my UC. During that time I had labs and injections every month, PET scans every 3 months and opted in for 2 kyphoplasty procedures to help reduce the pain in my spine, both lumbar and thoracic regions. Had issues with insurance authorizing new medication (Ibrance) so I just started taking Kisqali last week after being off Verzenio for 5weeks. Verzenio, Ibrance & Kisqali are all CDK4/6 inhibitors so the Kisqali should continue to work, but the side effects are a little different as is the dosage requirement. All that being said, I feel better than I did 7-8 months ago and the pain I have is tolerable on the days that it bothers me. I pray the Kisqali will continue to do the job that the Verzenio did (and without diarrhea), but only time will tell - next PET scan will be in October. With all that being said, YES, breast cancer can metastasize even while on aromatase inhibitors. Make sure your care team uses scans in addition to lab work and physical exams as often as they will allow. My care team told me that wasn't necessary and that the cancer markers in my blood would be the tell-tale sign of advancement. Didn't happen that way and I ended up with stage IV breast cancer. I moved all my care and treatments to MD Anderson and I travel 4 hours to get there. Yes, it's inconvenient, but I feel I'm in much better hands than I was initially. Educate yourself and don't ignore what your body or your mind tells you. Despite all the negatives, there are many treatment plans that can work. Everyone's situation is unique. I hope your cancer journey is the best it can be and you find the care you need! Prayers to all!
God bless you and thank you for this information it’s very helpful.
I started my bc journey at MD Anderson and then transitioned to Mayo. I hope I made the right decision.
Prayers to all
Hello Rubyslippers,
Definitely, I agree with you. I would like to know after all the treatments if I am disease free. I am currently on hormonal therapies and inhibitor. But I don't know if I am cancer free. I can only be cancer free if no residual cancer cells are not found in my blood and bones. In order to know this, you need a scan to detect. Nonetheless, if such scan is available at the end of cancer treatment it will give the doctor precise information about the cancer patients if they need additional medications or is cancer free. I hope such scan will be available in the bear future. Hopefully thus will give cancer patients who need more treatments get the right medical needs and those who are cured don't need to take additional medications unnecessarily.
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@chickenmom10 Did you have chemotherapy? I saw that you have Oncotype 20 , the same I have and doctors are still doubting if I have benefit from it or not . They are more likely to go only with hormonal therapy.
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No chem. But asked about verzenio I opt due to too many side effects.
And only gave me 4 percent I am at 86 percent to the good and it would bring to 90. Not worth it to me. Between dieting and walking they said it was beneficial for me. So that’s what I am doing at this time
Glad I found someone with the same journey
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1 ReactionI’m just doing anastrozole for 5 years
I had a lumpectomy. No implant, but I noticed that the radiated breast became swollen and harden a week after radiation and lasted for a few months. It eventually went away. I guess the apoptosis continues long after the last session.
Hi everyone,
Just wanted to let you all know that I saw a Naturopathic Oncologist today and she got my MRI moved up from August 30th to the 16th. So that’s good news.
She did a breast exam and said she felt 2 lumps (I can also feel 2 now). She said one felt long/maybe oval and the other felt round. Not sure what that really means but she did say that if the MRI can’t definitively say what they are, she will order a biopsy.
Just wanted to give an update!
Thanks!
-
Like -
Helpful -
Hug
9 ReactionsI have MLBC . Had several reccurrences over the course of 12 yrs. Double mastectomy on advice fr surgeon . That surgeon left 1 or 2 "rogue" cells ( she told me that was found, in lymph node area it was not a great concern to her. :(:( I felt a lump there a few yrs later , I had VerY substandard care--only saw an oncologist nurse was and she was very casual and said "Oh I think that's scar tissue" I naively took her word for it, then another oncologist a few yrs later said the same. I finally got someone to take it seriously and biopsy the grown lump. Positive, but not in a node and it was cut out & rad. , but it did go to a bone--Vertabrae L5---discovered 3 & 4 yrs later after another lump in left armpit area again, surgery & strong 5 blast sessions of rad-- disfigured more but not in node 🙂 and some lung sclerosis in that upper region, rhey say its typical. Had PA wanting to catscan my spine-'22 there is a lesion they saw but thought it was a bone island! all docs agreed late '23 ...scary biopsy: Drill into muscle/fat to get 3 core samples. Positive for MBLCk. Lobular IS there evidence that Lobular goes to bone (Is it a high % compared to Ductile? IS that statistic(s) available to look at ? Is it your D Farber Oncologist who said it . There's more research these days from Oncology staff.about lobular.BC
-
Like -
Helpful -
Hug
6 ReactionsHi
I am truly sorry you went through hurdles to get to the place you needed to be at. I am glad Verzenio is working for you. Of all inhibitors, I think Verzenio is most promising so far. I also think getting MRI biannual is important. I know doctors try to make it otherwise but I believe it is. I think the patient has to stay on top of their own health and keep researching for what is best treatment and medication and push for them. Best wishes.
-
Like -
Helpful -
Hug
1 ReactionTo tag onto @judypark001 comments about watching out for your own health -
I believe we need to get breast cancer specialists to use disease free survival as the end goal not just survival. If the focus is on survival then it is not imperative to find a cancer at the very earliest stages (which involves expense and time using MRI). Research shows that with current cancer treatments 97.5% will survive*. If survival is the goal, 97.5% sounds pretty good. I could have multiple recurrences and metastasis that is treatable until I die of something else (I then qualify as meeting the goal of surviving cancer). But I don’t want another cancer even if it is survivable. We want disease free survival.
Is it the doctor’s job to help you survive to your oldest age? Or, is it the doctor’s job to help you live disease free for as long as possible?
Insurance companies have a lot to do with the extent of the care we receive. If insurance won’t pay for it, the doctor doesn’t get paid. Insurance companies make decisions on cost. I’m guessing it must be cheaper to treat a few women with recurring cancer than it is to do annual MRIs on every female - otherwise you can be sure they would be pushing us all to get MRIs if it saved them money.
To be honest, we choose our insurance company and then want our doctors to provide care not covered by the insurance we chose. I don’t expect my doctor to work for free - so really it is up to me to pay for insurance that will pay my doctor.
To get better care it’s the insurance companies that must change, and increase their coverage to provide disease free survival. Unfortunately we are pretty powerless to force a change as individuals. Maybe we can raise awareness, though, that the goal should be disease free survival. Many who have never had cancer don’t understand the difference.
I suggest when we talk to our doctor’s we are clear that our goal is disease free survival DFS, or disease free intervals DFI (with extended time between intervals).
*American Cancer org
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4 ReactionsGod bless you and thank you for this information it’s very helpful.
I started my bc journey at MD Anderson and then transitioned to Mayo. I hope I made the right decision.
Prayers to all
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Helpful -
Hug
1 ReactionHello Rubyslippers,
Definitely, I agree with you. I would like to know after all the treatments if I am disease free. I am currently on hormonal therapies and inhibitor. But I don't know if I am cancer free. I can only be cancer free if no residual cancer cells are not found in my blood and bones. In order to know this, you need a scan to detect. Nonetheless, if such scan is available at the end of cancer treatment it will give the doctor precise information about the cancer patients if they need additional medications or is cancer free. I hope such scan will be available in the bear future. Hopefully thus will give cancer patients who need more treatments get the right medical needs and those who are cured don't need to take additional medications unnecessarily.
-
Like -
Helpful -
Hug
1 Reaction