Yes every year because I have a healthy breast and the mammo AND ultrasound FAILED to find TWO tumors in one breast 3 and 4 cm.
So I alternate every 6 mos mammo/MRI. Very disappointing that nothing helps me find these tumors. I insisted on an MRI after my mammo and ultrasound were negative first time around. Thank goodness I’m one of those Self Advocate Warriors! I saved my own life !
Right out of the box I will say I never had an Oncotype DX. They gave me no choice but to have dose dense chemotherapy and 6 weeks of radiation, Zometa infusions for 3 years and an AI for 10 years. I went for all of it 100%. As a 69 year old woman (and looking back, I am 5 yrs out-now 74), I guess I went kind of big with all of this. Not that I don't worry about recurrence (I think we all do) -- but I'm glad I made the choices I did. I will at least know that for my part, I did all I could at the time. I had ILC, 5 tumors in one breast and 10 out of 16 nodes diseased.
@anjalima
I did 20 Radiation treatments. About 2 hours after my first treatment, I had sharp stinging sensations under my armpit (kind of like bee stings). And that came and went throughout my treatments. My Rad Onc said it’s not typical to have symptoms that soon, but she has had a few patients who have.
Other than that, I didn’t notice anything until a couple weeks in…had pretty bad skin burns (even though I used the lotions they gave me everyday).
Honestly, I remember the worst part being a couple days after I finished treatments….my nipple itched soooo bad, but it was the type of itch that was deep and I couldn’t get to it. It drove me crazy for a while!
So I am hoping the lump I’m feeling now is scar tissue from the Radiation. 🤞🏻
@anjalima
I did 20 Radiation treatments. About 2 hours after my first treatment, I had sharp stinging sensations under my armpit (kind of like bee stings). And that came and went throughout my treatments. My Rad Onc said it’s not typical to have symptoms that soon, but she has had a few patients who have.
Other than that, I didn’t notice anything until a couple weeks in…had pretty bad skin burns (even though I used the lotions they gave me everyday).
Honestly, I remember the worst part being a couple days after I finished treatments….my nipple itched soooo bad, but it was the type of itch that was deep and I couldn’t get to it. It drove me crazy for a while!
So I am hoping the lump I’m feeling now is scar tissue from the Radiation. 🤞🏻
Right out of the box I will say I never had an Oncotype DX. They gave me no choice but to have dose dense chemotherapy and 6 weeks of radiation, Zometa infusions for 3 years and an AI for 10 years. I went for all of it 100%. As a 69 year old woman (and looking back, I am 5 yrs out-now 74), I guess I went kind of big with all of this. Not that I don't worry about recurrence (I think we all do) -- but I'm glad I made the choices I did. I will at least know that for my part, I did all I could at the time. I had ILC, 5 tumors in one breast and 10 out of 16 nodes diseased.
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!
@hikerlou I am 10 years out from a nasty grade 3 cancer with LVI, but no chemo according to the Oncotype. After my 5 years of letrozole my oncologist no longer sees me even though risk goes up with hormonal cancers. My oncologist does not do the cancer marker blood tests and Signatera is used only after stage 4 is diagnosed.
With 7 spinal osteoporotic fractures, cervical and lumbar stenosis, scoliosis, and osteoarthritis, of course I have pain so how am I supposed to tell if cancer has spread. Some of mine was lobular which is hard to image. I have no breasts to scan.
Have you considered a full body MRI? I know they are expensive but absurd more surveillance isn't ordered for us as early detection is all we have!! The Signatera test is not as expensive and if you ask your oncologist would they not order? xo
Have you considered a full body MRI? I know they are expensive but absurd more surveillance isn't ordered for us as early detection is all we have!! The Signatera test is not as expensive and if you ask your oncologist would they not order? xo
I’m having a PET scan tomorrow. I’m also a Signatera client every 6 mos. Due August. Three prior blood draws were negative for ctDNA. Last one was January.
I’m doing everything I can but in the end with all the surveillance I FOUND IT both times!
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Oh wow! Have you been getting mris regularly? I was told I would never have mri again unless something was questionable.
Yes every year because I have a healthy breast and the mammo AND ultrasound FAILED to find TWO tumors in one breast 3 and 4 cm.
So I alternate every 6 mos mammo/MRI. Very disappointing that nothing helps me find these tumors. I insisted on an MRI after my mammo and ultrasound were negative first time around. Thank goodness I’m one of those Self Advocate Warriors! I saved my own life !
Be your OWN surveillance machine!
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3 ReactionsMy diagnosis was IDC ER/PR+HER2- unless you have this particular diagnosis an ONCOTYPE will not be used as it cannot measure outside of this paradigm.
My ONCOTYPE revealed that I would not benefit from chemo so not a consideration.
The radiation was questionable and I went with NOT and I regret it.
This appears to be a rogue cell that got away ( rad would likely have killed it).
It’s 4mm in area of original tumor. PET tomorrow to rule out a major problem. 🙏🙏🙏
Will def have radiation now after resection.
Can anyone chime in on their radiation experiences and side effects?
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I did 20 Radiation treatments. About 2 hours after my first treatment, I had sharp stinging sensations under my armpit (kind of like bee stings). And that came and went throughout my treatments. My Rad Onc said it’s not typical to have symptoms that soon, but she has had a few patients who have.
Other than that, I didn’t notice anything until a couple weeks in…had pretty bad skin burns (even though I used the lotions they gave me everyday).
Honestly, I remember the worst part being a couple days after I finished treatments….my nipple itched soooo bad, but it was the type of itch that was deep and I couldn’t get to it. It drove me crazy for a while!
So I am hoping the lump I’m feeling now is scar tissue from the Radiation. 🤞🏻
I hope so too but get it checked in case!
Was this your right or left ?
Since I don’t have a nipple ???😂
I had 6 weeks of intensive radiation. I was very lucky. No side effects, not even skin problems. But here again, they didn't give me a choice.
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1 ReactionThanks 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!
@anjalima
I have an ultrasound on Wednesday.
Lol…Right breast.
Have you considered a full body MRI? I know they are expensive but absurd more surveillance isn't ordered for us as early detection is all we have!! The Signatera test is not as expensive and if you ask your oncologist would they not order? xo
I’m having a PET scan tomorrow. I’m also a Signatera client every 6 mos. Due August. Three prior blood draws were negative for ctDNA. Last one was January.
I’m doing everything I can but in the end with all the surveillance I FOUND IT both times!
-
Like -
Helpful -
Hug
3 Reactions