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.
My oncologist said PCP should do x-rays to start. The x-ray will show arthritis. I have 7 vertebral fractures, 3 since my cancer, and those are attributed to osteoporosis. Good luck to you!
ps what is unusual is that the hip pain only happens with pressure, as with lying on it, not with movement
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 : )
My oncologist said PCP should do x-rays to start. The x-ray will show arthritis. I have 7 vertebral fractures, 3 since my cancer, and those are attributed to osteoporosis. Good luck to you!
ps what is unusual is that the hip pain only happens with pressure, as with lying on it, not with movement
Have you, or can you push for a PET scan? I know you have been concerned about this hip for a while now and I think it would go a long way to either finding out the why and getting a resolution, or to easing your mind.
Do you have a doctor that might order this for you?
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...
From what I have read, but I may be wrong on this, there are three types of potential recurrences: local, which can be either a recurrence from stray BC cells from the original tumor, or a new primary in the same (ipsilateral) or other (contralateral) breast; regional, such as in lymph nodes or chest wall; or distant meaning metastatic stage 4 BC that may have been from dormant or circulating BC cells. For ER/PR+ HR- BC with lumpectomy there is a tool to determine risk for ipsilateral recurrence with or without hormone, radiation, and chemotherapy treatment: https://www.tuftsmedicalcenter.org/ibtr/ The Oncotype score, and the PREDICT test, provide an estimate only for the risk of a metastatic recurrence. It is my understanding that radiation may be more effective for ipsilateral risk than anti-estrogen drugs, but that AI's or tamoxifen are more effective against new primaries and more distant recurrences by decreasing the estrogen environment favored by ER+ breast cancer. Thank you @callalloo for your research on the OncotypeDX scores!
Have you, or can you push for a PET scan? I know you have been concerned about this hip for a while now and I think it would go a long way to either finding out the why and getting a resolution, or to easing your mind.
Do you have a doctor that might order this for you?
I am just living with hip pain for now-very mild when I lay on it-not walking
but always good to investigate something that can be more serious.
Best to you and your journey
From what I have read, but I may be wrong on this, there are three types of potential recurrences: local, which can be either a recurrence from stray BC cells from the original tumor, or a new primary in the same (ipsilateral) or other (contralateral) breast; regional, such as in lymph nodes or chest wall; or distant meaning metastatic stage 4 BC that may have been from dormant or circulating BC cells. For ER/PR+ HR- BC with lumpectomy there is a tool to determine risk for ipsilateral recurrence with or without hormone, radiation, and chemotherapy treatment: https://www.tuftsmedicalcenter.org/ibtr/ The Oncotype score, and the PREDICT test, provide an estimate only for the risk of a metastatic recurrence. It is my understanding that radiation may be more effective for ipsilateral risk than anti-estrogen drugs, but that AI's or tamoxifen are more effective against new primaries and more distant recurrences by decreasing the estrogen environment favored by ER+ breast cancer. Thank you @callalloo for your research on the OncotypeDX scores!
I think you have this confusing stuff correct and thanks for the explanations. The only thing that I was told that might be different refers to the type of radiation I was offered after the lumpectomy.
The onco/radiologist offered a 5 session series (over 10 days) of radiation focusing only on the tumor site. She described as analogous to breaking a dish (tumor) and cleaning it up (surgerywith clean margins)...but then sweeping the area one more time (the radiation) just to ensure all the particles were fully removed. It was definitely to prevent any future spread from any remaining cancer cells in that exact area and independent of aromatase inhibitors that, in theory, provide broader systemic protection from spread or recurrence.
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.
There are situations in which a patient does better on tamoxifen (a SERM) or an aromatase inhibitor. And vice versa. And there are a few different aromatase inhibitors and, if one triggers uncomfortable side effects, another might be easier to deal with. If you find that you don't tolerate tamoxifen well, consider getting a second opinion if your oncologist balks at exploring the options further.
From what I have read, but I may be wrong on this, there are three types of potential recurrences: local, which can be either a recurrence from stray BC cells from the original tumor, or a new primary in the same (ipsilateral) or other (contralateral) breast; regional, such as in lymph nodes or chest wall; or distant meaning metastatic stage 4 BC that may have been from dormant or circulating BC cells. For ER/PR+ HR- BC with lumpectomy there is a tool to determine risk for ipsilateral recurrence with or without hormone, radiation, and chemotherapy treatment: https://www.tuftsmedicalcenter.org/ibtr/ The Oncotype score, and the PREDICT test, provide an estimate only for the risk of a metastatic recurrence. It is my understanding that radiation may be more effective for ipsilateral risk than anti-estrogen drugs, but that AI's or tamoxifen are more effective against new primaries and more distant recurrences by decreasing the estrogen environment favored by ER+ breast cancer. Thank you @callalloo for your research on the OncotypeDX scores!
P.S. I used the 'calculator algorithm on the Tufts website and it yielded a very low risk of recurrence. Which is very reassuring as I declined radiation and anti-hormone drugs. And my oncologist didn't suggest chemo after the OncotypeDX results.
I'm so sorry to read that and know other readers also wish they could do more than affirm their caring support. We're truly all in this "alone together." The eleven years is a kind of triumph of modern medicine...and there are new treatments that weren't available even only 11 years ago to help fight the next battle ...
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My oncologist said PCP should do x-rays to start. The x-ray will show arthritis. I have 7 vertebral fractures, 3 since my cancer, and those are attributed to osteoporosis. Good luck to you!
ps what is unusual is that the hip pain only happens with pressure, as with lying on it, not with movement
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2 Reactions@bcwarrior thank you for sharing. I am just beginning my journey. May I ask what treatments/therapies you did in 2007? And what you are doing now?
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3 ReactionsHave you, or can you push for a PET scan? I know you have been concerned about this hip for a while now and I think it would go a long way to either finding out the why and getting a resolution, or to easing your mind.
Do you have a doctor that might order this for you?
-
Like -
Helpful -
Hug
2 ReactionsFrom what I have read, but I may be wrong on this, there are three types of potential recurrences: local, which can be either a recurrence from stray BC cells from the original tumor, or a new primary in the same (ipsilateral) or other (contralateral) breast; regional, such as in lymph nodes or chest wall; or distant meaning metastatic stage 4 BC that may have been from dormant or circulating BC cells. For ER/PR+ HR- BC with lumpectomy there is a tool to determine risk for ipsilateral recurrence with or without hormone, radiation, and chemotherapy treatment: https://www.tuftsmedicalcenter.org/ibtr/ The Oncotype score, and the PREDICT test, provide an estimate only for the risk of a metastatic recurrence. It is my understanding that radiation may be more effective for ipsilateral risk than anti-estrogen drugs, but that AI's or tamoxifen are more effective against new primaries and more distant recurrences by decreasing the estrogen environment favored by ER+ breast cancer. Thank you @callalloo for your research on the OncotypeDX scores!
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Hug
7 ReactionsThanks @auntieoakley!
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2 ReactionsI am just living with hip pain for now-very mild when I lay on it-not walking
but always good to investigate something that can be more serious.
Best to you and your journey
-
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Helpful -
Hug
4 ReactionsI think you have this confusing stuff correct and thanks for the explanations. The only thing that I was told that might be different refers to the type of radiation I was offered after the lumpectomy.
The onco/radiologist offered a 5 session series (over 10 days) of radiation focusing only on the tumor site. She described as analogous to breaking a dish (tumor) and cleaning it up (surgerywith clean margins)...but then sweeping the area one more time (the radiation) just to ensure all the particles were fully removed. It was definitely to prevent any future spread from any remaining cancer cells in that exact area and independent of aromatase inhibitors that, in theory, provide broader systemic protection from spread or recurrence.
There are situations in which a patient does better on tamoxifen (a SERM) or an aromatase inhibitor. And vice versa. And there are a few different aromatase inhibitors and, if one triggers uncomfortable side effects, another might be easier to deal with. If you find that you don't tolerate tamoxifen well, consider getting a second opinion if your oncologist balks at exploring the options further.
-
Like -
Helpful -
Hug
1 ReactionP.S. I used the 'calculator algorithm on the Tufts website and it yielded a very low risk of recurrence. Which is very reassuring as I declined radiation and anti-hormone drugs. And my oncologist didn't suggest chemo after the OncotypeDX results.
-
Like -
Helpful -
Hug
2 ReactionsI'm so sorry to read that and know other readers also wish they could do more than affirm their caring support. We're truly all in this "alone together." The eleven years is a kind of triumph of modern medicine...and there are new treatments that weren't available even only 11 years ago to help fight the next battle ...