Quite interesting. I opted for mastectomy to avoid radiation.
Thank you for sharing your story.
FYI I had very mild mitigable side effects with Anastrozole and even less when I switched to name brand.
Did you have undesired side effects from radiation?
@anjalima
No noticeable AI effects, and rad was so uneventful I wondered if they were doing it right (technicians seemed awfully young!), a little fatigue perhaps but nothing on skin. But about my recurrence I also think was a rogue cell, site very near lumpectomy scar, but obviously the rad did not eliminate it. Dr. said maybe would have recurred earlier without rad, but still, it was supposed to eradicate those rogue cells.
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!
Hello. Not sure what you mean by "critical time" but I have mammograms in June and MRI's in Dec. I also see someone (oncologist, surgeon, rad. oncologist, primary care) every 3 months. I have full blood chemistries every 6 months (including calcium, liver and kidney). I don't not do "cancer type" tumor marker tests. I honestly could not handle that on the reg. I work two jobs (yes, even at 74) and so far all this has worked. I am unhappy when I hear that people have to beg for follow-up imaging. What I have seen is that this is often tied into whether or not someone is eligible for medicare. I also have 100% coverage medicare supplemental insurance. Regardless of the reason, it doesn't seem fair to me. I am glad you insisted!
I think an ultrasound would help, or at least it is the step in their protocol to move forward in diagnosing it.
Have you read about an “abbreviated MRI”? Seems to be a new thing, only like 10 minutes. I’m guessing it doesn’t use contrast. That may be the procedure they start recommending.
Unfortunately, unless God decides to take this disease from my body, it is incurable. It can be managed through treatments that could include medications, diet, supplementations, exercise, etc but it is chronic and there is no cure. Life expectancy varies depending on other medical conditions, emotional well being, physical condition and reaction to treatments. Quality of life is my focus and I pray a lot.
Hello. Not sure what you mean by "critical time" but I have mammograms in June and MRI's in Dec. I also see someone (oncologist, surgeon, rad. oncologist, primary care) every 3 months. I have full blood chemistries every 6 months (including calcium, liver and kidney). I don't not do "cancer type" tumor marker tests. I honestly could not handle that on the reg. I work two jobs (yes, even at 74) and so far all this has worked. I am unhappy when I hear that people have to beg for follow-up imaging. What I have seen is that this is often tied into whether or not someone is eligible for medicare. I also have 100% coverage medicare supplemental insurance. Regardless of the reason, it doesn't seem fair to me. I am glad you insisted!
Totally agree and mentioning "critical time" as this seems to be common year that lobular reoccurrences are picked up! Glad you are being followed closely and yes I'm only 58yrs so not on Medicare but my insurance has accepted the request for MRI given my extremely dense breasts. I've very worried about reoccurence as even with radiation and AI we all know that microscopic cancer cells can remain. We all just hope they can be picked up as early as possible and I think blood work, scans help us stay hopeful for early detection. It just seems that many reoccurrences are picked up after it has spread etc. Good luck xoxo
@anjalima
No noticeable AI effects, and rad was so uneventful I wondered if they were doing it right (technicians seemed awfully young!), a little fatigue perhaps but nothing on skin. But about my recurrence I also think was a rogue cell, site very near lumpectomy scar, but obviously the rad did not eliminate it. Dr. said maybe would have recurred earlier without rad, but still, it was supposed to eradicate those rogue cells.
I had a double Mas. and BC has returned after a so called rogue cell in the arm pit area (all BC of left side) Radiation hasn't helped me. I had suspiciously confused technicians in '19 and '22 in Fl, then NC. they shuffled and fumbled around with starting machinery then changing position of it , I felt electric shocks leaving the Fl clinic. , then in NC the 2 techs were disagreeing in front of me once procedure started; stopping standing around me talking over me as I lay perfectly still hoping for a miracle . They said something about colors saying, "no I do the brown and the other said no I always just do yellow. And it was sort of some sort of shrug of the shoulders I guess I do not think I was positioned to look at them and they just walked away and started again. I'm burned to a crisp after a few month, have limited range of motion there and sunken missing tissue (which I guess is necrosis) If I was having a lumpectomy, I'd definitely say, PLEASE do very GOOD clear margins to help cut out more chances of rogue cells being left behind.
I had a double Mas. and BC has returned after a so called rogue cell in the arm pit area (all BC of left side) Radiation hasn't helped me. I had suspiciously confused technicians in '19 and '22 in Fl, then NC. they shuffled and fumbled around with starting machinery then changing position of it , I felt electric shocks leaving the Fl clinic. , then in NC the 2 techs were disagreeing in front of me once procedure started; stopping standing around me talking over me as I lay perfectly still hoping for a miracle . They said something about colors saying, "no I do the brown and the other said no I always just do yellow. And it was sort of some sort of shrug of the shoulders I guess I do not think I was positioned to look at them and they just walked away and started again. I'm burned to a crisp after a few month, have limited range of motion there and sunken missing tissue (which I guess is necrosis) If I was having a lumpectomy, I'd definitely say, PLEASE do very GOOD clear margins to help cut out more chances of rogue cells being left behind.
@rococo325
I am so sorry you are going through this after everything you have already been through. What is your treatment plan going forward? Praying for you!
Did your necrosis feel like a hard lump? Is it from the radiation?
My dr said chemo would not work. Took ais for 4 years then she stopped it, wanted to continue but she said no cause I could have resistance. Took radiation. Now have extreme anxiety. Taking Luvox and thryoid and klonapin. Not happy with choices do lots of deep breathing
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@anjalima
No noticeable AI effects, and rad was so uneventful I wondered if they were doing it right (technicians seemed awfully young!), a little fatigue perhaps but nothing on skin. But about my recurrence I also think was a rogue cell, site very near lumpectomy scar, but obviously the rad did not eliminate it. Dr. said maybe would have recurred earlier without rad, but still, it was supposed to eradicate those rogue cells.
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1 ReactionHello. Not sure what you mean by "critical time" but I have mammograms in June and MRI's in Dec. I also see someone (oncologist, surgeon, rad. oncologist, primary care) every 3 months. I have full blood chemistries every 6 months (including calcium, liver and kidney). I don't not do "cancer type" tumor marker tests. I honestly could not handle that on the reg. I work two jobs (yes, even at 74) and so far all this has worked. I am unhappy when I hear that people have to beg for follow-up imaging. What I have seen is that this is often tied into whether or not someone is eligible for medicare. I also have 100% coverage medicare supplemental insurance. Regardless of the reason, it doesn't seem fair to me. I am glad you insisted!
My MRI is with and without contrast
Hi MChler,
I hope your ultrasound goes well and will weigh in on your situation once you get that done . Good luck!
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1 ReactionUnfortunately, unless God decides to take this disease from my body, it is incurable. It can be managed through treatments that could include medications, diet, supplementations, exercise, etc but it is chronic and there is no cure. Life expectancy varies depending on other medical conditions, emotional well being, physical condition and reaction to treatments. Quality of life is my focus and I pray a lot.
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1 Reaction@rococo325
Thank you!! I will definitely post what I find out.
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1 ReactionTotally agree and mentioning "critical time" as this seems to be common year that lobular reoccurrences are picked up! Glad you are being followed closely and yes I'm only 58yrs so not on Medicare but my insurance has accepted the request for MRI given my extremely dense breasts. I've very worried about reoccurence as even with radiation and AI we all know that microscopic cancer cells can remain. We all just hope they can be picked up as early as possible and I think blood work, scans help us stay hopeful for early detection. It just seems that many reoccurrences are picked up after it has spread etc. Good luck xoxo
I had a double Mas. and BC has returned after a so called rogue cell in the arm pit area (all BC of left side) Radiation hasn't helped me. I had suspiciously confused technicians in '19 and '22 in Fl, then NC. they shuffled and fumbled around with starting machinery then changing position of it , I felt electric shocks leaving the Fl clinic. , then in NC the 2 techs were disagreeing in front of me once procedure started; stopping standing around me talking over me as I lay perfectly still hoping for a miracle . They said something about colors saying, "no I do the brown and the other said no I always just do yellow. And it was sort of some sort of shrug of the shoulders I guess I do not think I was positioned to look at them and they just walked away and started again. I'm burned to a crisp after a few month, have limited range of motion there and sunken missing tissue (which I guess is necrosis) If I was having a lumpectomy, I'd definitely say, PLEASE do very GOOD clear margins to help cut out more chances of rogue cells being left behind.
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3 Reactions@rococo325
I am so sorry you are going through this after everything you have already been through. What is your treatment plan going forward? Praying for you!
Did your necrosis feel like a hard lump? Is it from the radiation?
My dr said chemo would not work. Took ais for 4 years then she stopped it, wanted to continue but she said no cause I could have resistance. Took radiation. Now have extreme anxiety. Taking Luvox and thryoid and klonapin. Not happy with choices do lots of deep breathing
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Helpful -
Hug
2 Reactions