My plan is no chemo or radiation. I am to try tamoxifin and see if I can take it, if not will move to a different one. I did not want to take tamoxifin, my oncologist convinced me to take it.
Hi beautybldr. I saw your discussion but not sure what stage you are. I am stage 4 IDC, ER+/Her-2neg. If I can be of any help with questions please do not hesitate to ask.
Peggie
I asked Exact Sciences about the risk of 'spread' versus recurrence since the OncotypeDX (the test I had) doesn't specifically predict that. The answer is interesting and the person in the science section whom I spoke with is sending me more info. But, basically, the same TaylorRX data pool from which Oncotype based much of its algorithm (not a good explanation but to keep things simple) also included 'spread' as well as recurrence statistics. Inferentially, a low risk of distant recurrence correlates with, also, a low risk for spread from cancer site assuming clean margins. Cancer-free lymph nodes lowers that risk further. If only we could get 100% perfect data, decisions would be so much easier, sigh. But at least we have better tools than women even 20 years ago.
Could you explain the difference between 'spread' and distant recurrence? I'm puzzled since if the bc is found elsewhere (distant recurrence) doesn't that mean it has spread? Thanks!
Could you explain the difference between 'spread' and distant recurrence? I'm puzzled since if the bc is found elsewhere (distant recurrence) doesn't that mean it has spread? Thanks!
It does sound confusing doesn't it? In this case, I'm referring to 'spread' as a case where cancer cells might not have been fully removed or killed at an original cancer site and lead to a further cancer at the original site. For example, where surgical excision failed to have sufficient clean margins and left some active cancer cells behind. And chemo or radiation failed to kill those cells, etc. In a sense, a cancer caused by cells in the original site that remained viable and active.
As I understand it, the original cancer can have been fully eliminated but a new cancer also form in the same relative area later and would be a local recurrence.
A distant recurrence would be a new cancer, but still a breast cancer, occurring anywhere in the body outside of the original cite, including in non-breast tissue, in but still a breast-type cancer.
Some usage would suggests that the distant recurrence is an example of a cancer that 'spread' to a wholly new area, possibly after a period of dormancy.
But one oncologist, in an article in the New England Journal of Medicine argued that these should be considered new, independent cancer events and totally unrelated to the original cancer and not an example of cancer 'spreading.' He argued that the means by which a cancer, with no evidence of survival, can nonetheless survive and 'recur' in a remote part of the body has never been explained. And that one can simply 'be unlucky' and get cancer more than one time.
The OncotypeDX reports give a probability assessment for 'distant recurrence within 9 years' if the person takes anti-hormone therapy.
I welcome anyone with better or more precise descriptions of the difference between local spread and distant recurrence to please chime in on thus in case I've made it even less clear...
My plan is no chemo or radiation. I am to try tamoxifin and see if I can take it, if not will move to a different one. I did not want to take tamoxifin, my oncologist convinced me to take it.
I just started Tamoxofin this week. Did your Onco mention a time frame as to when side effects start. I already feel I’m gaining weight but it’s because I can’t exercise until I’m healed. I typically workout an hour a day and haven’t exercised in over a month. Now adding Tamoxifin I’m pretty concerned about my shape.
I just started Tamoxofin this week. Did your Onco mention a time frame as to when side effects start. I already feel I’m gaining weight but it’s because I can’t exercise until I’m healed. I typically workout an hour a day and haven’t exercised in over a month. Now adding Tamoxifin I’m pretty concerned about my shape.
I did not start taking it when I should have, so I have only been on it 4 days. So far I have not experienced any side effects. Hopefully none will arrive.
I tried 2 other medications before I found one that I could live with the side effects for daily life. Please dig deeper into this site to read all the real-life stories. My ER-PR-positive breast cancer stage #1 started with a lumpectomy on 01/17/2007 and reared its ugly head in 2022 as stage #2. I did Arimidex 2008 finally after trying the other options. No guarantees but from what I've learned here and personal experience you are in charge of your own medical decisions. Hope you read everything you can on this breast cancer thread to actually hear the stories. Happy I woke up today 🙂
BCWarrior & soon to be conquered,
Lynn
Contact me if you want : )
The OncotypeDX gives a 'risk of recurrence within 9 years' number, given as a % (probability) of recurrence, conditional upon taking aromatase inhibitors or tamoxifen.
It does not give a probability of recurrence if one declines anti-hormone therapy. One can however calculate that drug-free risk using industry estimates of the benefit of the anti-hormone drugs. The rough calculation would be to double that risk number to get rough idea of added risk of not taking anti-hormone therapy.
15% of people who take the OncotypeDX get a risk score of 3% or less with the majority of those cases also having had cancer-free sentinel lymph node negative biopsies. [I confirmed this number with Exact Sciences, the purveyor of the OncotypeDX, recently as there's misinformation on Mayo Connect stating that 30% of the OncotypeDX tests yield 3% risk of lower. That is incorrect.]
@zolamiller7 So sorry you are dealing with this. I hope you have good care and feel good about your doctor.
If you don't mind, how did you know to get tests on your bones? And what tests? I am having increasing hip pain that is different from arthritis. Not anxious yet but feel like I will get it checked.
Every case is different-I lost my voice and an ENT said the nerve from my
chest(where cancer started) was paralyzing the vocal chord-surgery and
other tests showed it was cancer-then the fractures of the vertebrae caused
more investigation to find the Stage 4. I think the spine is the most common
starting place but hip pain can be from other sources that could investigated.
It took awhile PET,MRI, etc can help as your doctor determines the cause.
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My plan is no chemo or radiation. I am to try tamoxifin and see if I can take it, if not will move to a different one. I did not want to take tamoxifin, my oncologist convinced me to take it.
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2 ReactionsHi beautybldr. I saw your discussion but not sure what stage you are. I am stage 4 IDC, ER+/Her-2neg. If I can be of any help with questions please do not hesitate to ask.
Peggie
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8 ReactionsCould you explain the difference between 'spread' and distant recurrence? I'm puzzled since if the bc is found elsewhere (distant recurrence) doesn't that mean it has spread? Thanks!
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1 ReactionIt does sound confusing doesn't it? In this case, I'm referring to 'spread' as a case where cancer cells might not have been fully removed or killed at an original cancer site and lead to a further cancer at the original site. For example, where surgical excision failed to have sufficient clean margins and left some active cancer cells behind. And chemo or radiation failed to kill those cells, etc. In a sense, a cancer caused by cells in the original site that remained viable and active.
As I understand it, the original cancer can have been fully eliminated but a new cancer also form in the same relative area later and would be a local recurrence.
A distant recurrence would be a new cancer, but still a breast cancer, occurring anywhere in the body outside of the original cite, including in non-breast tissue, in but still a breast-type cancer.
Some usage would suggests that the distant recurrence is an example of a cancer that 'spread' to a wholly new area, possibly after a period of dormancy.
But one oncologist, in an article in the New England Journal of Medicine argued that these should be considered new, independent cancer events and totally unrelated to the original cancer and not an example of cancer 'spreading.' He argued that the means by which a cancer, with no evidence of survival, can nonetheless survive and 'recur' in a remote part of the body has never been explained. And that one can simply 'be unlucky' and get cancer more than one time.
The OncotypeDX reports give a probability assessment for 'distant recurrence within 9 years' if the person takes anti-hormone therapy.
I welcome anyone with better or more precise descriptions of the difference between local spread and distant recurrence to please chime in on thus in case I've made it even less clear...
-
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2 ReactionsI just started Tamoxofin this week. Did your Onco mention a time frame as to when side effects start. I already feel I’m gaining weight but it’s because I can’t exercise until I’m healed. I typically workout an hour a day and haven’t exercised in over a month. Now adding Tamoxifin I’m pretty concerned about my shape.
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Hug
2 ReactionsI did not start taking it when I should have, so I have only been on it 4 days. So far I have not experienced any side effects. Hopefully none will arrive.
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2 ReactionsHi, beautybldr,
I hope and pray no side effects for you!
I tried 2 other medications before I found one that I could live with the side effects for daily life. Please dig deeper into this site to read all the real-life stories. My ER-PR-positive breast cancer stage #1 started with a lumpectomy on 01/17/2007 and reared its ugly head in 2022 as stage #2. I did Arimidex 2008 finally after trying the other options. No guarantees but from what I've learned here and personal experience you are in charge of your own medical decisions. Hope you read everything you can on this breast cancer thread to actually hear the stories. Happy I woke up today 🙂
BCWarrior & soon to be conquered,
Lynn
Contact me if you want : )
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7 ReactionsI was not on that medicine-just Arimidex-anastrole but made it for 11 yrs with recurrence in bones and some signs in other organs
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4 Reactions@zolamiller7 So sorry you are dealing with this. I hope you have good care and feel good about your doctor.
If you don't mind, how did you know to get tests on your bones? And what tests? I am having increasing hip pain that is different from arthritis. Not anxious yet but feel like I will get it checked.
-
Like -
Helpful -
Hug
2 ReactionsEvery case is different-I lost my voice and an ENT said the nerve from my
chest(where cancer started) was paralyzing the vocal chord-surgery and
other tests showed it was cancer-then the fractures of the vertebrae caused
more investigation to find the Stage 4. I think the spine is the most common
starting place but hip pain can be from other sources that could investigated.
It took awhile PET,MRI, etc can help as your doctor determines the cause.
-
Like -
Helpful -
Hug
4 Reactions