After breast cancer: 12 years out, questions about recurrence

Posted by bigfootx2 @bigfootx2, Mar 18, 2022

I had ER + stage 3 bc 12 years ago. Within 2 months of chemo after a double mastectomy i developed severe myasthenia gravis and rhumatoid arthritis. I get plasmaphoresis every 6 weeks a year ago had my thy.us gland out to see if it would help and my treatments went from every 2 weeks to every 6 weeks and rituxan every 4 mo ths. My question is , i have small hypodensities in my liver, inditerminate, could be nothing, probably is nothing but my tumor markers for 27-29 went fromm 11 to 38 even though in normal tange they are on the edge. My question is can plasma phoresis lower the tumor marker count as protiens are replaced? Just curious as my body is complex. My onocologist said reoccurance doesnt happen at 12 years, but i read an article that it can happen at 15,and even 20 years. My tumor was over 5 and no lymph node, 2 areas in left breast and pre cancer in right breast although i understand bc doesnt spread from on side to the other so that was different in itself. I also have MlH1 lynch syndrome , my mother,sister,2 uncles had colon cancer, aunt stomach cancer, uncle breast cancer, uncle brain cancer, aunt ovarian and throat cancer. Wondering if following up with just my gastro doctor is enough with another CT in 6 months. My BC ono pretty much said my tumor markers are ok and even though I have lost 24 lbs without trying there is nothing to worry about.

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@monigue

I found your respond is very interesting and wander if you can refer to material ( where can I find it?)
I have bilateral lumpectomy in July/2021 . No chemo or radiation.
The pathology report and MRI soon after surgery showed some residue of cancerous cells.
The last one this month doesn’t show ones.
Though it is a good news , It echoes with your comments about specialist’s narrowing observation .
Therefore, I prefers to
do my home work before talking to a doctor..
Thank you

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Hi Moniguen, I assume that you're referring to the study that I mentioned questioning whether second and later breast cancer are in fact recurrences (of the same origin) or unrelated events. I'll try to find the study and, if I do, post the name and author(s). I read it during a whirlwind of trying to learn whatever I could upon being surprised to be diagnosed with breast cancer. It was a surprise as the only incidence in my family of ant cancer was father's prostate. [Interestingly, my oncologist thinks that prostate cancer being in my nuclear family, while not breast cancer of a female, might be of interest as both are hormone-sensitive. That's just his musing after treating cancer breast cancer patients for nearly 30 years.]
As to the study, the oncologist who headed seems to be rethinking how and if breast cancer can metastasize in a distant part of the body years after its first appearance. Cancer is a quixotic enemy. One woman I read about on a Mayo Connect thread had cancers in both breasts, with one being estrogen positive and the other estrogen negative. I don't recall if they were concurrent though.
For what it's worth, I found learning as much as I could, as soon as I got the diagnosis, enabled me to get better use of the doctors' appointment times. They didn't have to go over the very basics and terminology and such. That was a big help and we got right to post-surgical treatment plan. I relied on the OncotypeDX risk profile and am glad that we had that extra data in hand.and hope every woman facing this challenge gets that extra data.
Thank you for posting and don't underestimate good news when it has just as much chance of being true. The diagnostic technology is great but not perfect and our bodies have all kinds of odd things that self-resolve or were 'artifacts' generated by the tech equipment that aren't seen again.

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@mssewest

My BC was triple positive in 2012, standard chemo with trial drug Neratanib for 3 months, double mastectomy, 35 rads was on Tamoxifen for 7.5 years (10) was recommended but when I reached menopause was switched to Anastrazole. Now I had been diagnosed with reoccurrence to chest wall, lymph nodes, abdomen, liver & spine. I don’t know how doctors can say reoccurrence cannot occur after 10 years. I know other survivors who have had reoccurrences after 12 plus years, even after 15. Can a PET scan be ordered or a 2nd opinion?

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I don't think doctors can say whether, when or if breast cancer can or cannot occur or 'reoccur.' There's no definitive data to support that level of assurance. They can cite the statistics currently thought to be the most reliable but that's about it. And, as noted, unfortunately, one episode of cancer doesn't promise us a cancer-free remainder of life.

On the other hand, our bodies are fighting off rogue cells daily that never get a chance to hunker down and multiply. I was worried about having a large-needle biopsy, thinking that the very process of extracting cells could maybe disturb a stable colony of them and trigger some kind of dispersion. I found studies looking at that as a risk and a few noted that they in fact found that lone rogue cells outside the tumor areas tended to kind of die off and not be able to achieve critical mass. I realize that this raises the question as to how their former colleagues were able to achieve critical mass in the first place but I decided to take some reassurance from those observations. At the time I was kind of in shock to even learn of a lump that needed to be biopsies in my body so I was worrying about everything. (What I didn't need to worry about was having excellent doctors at every step of the way. I had recently, for totally unrelated reasons, found a new PCP at a top-ranked institution and ponder how I would have done without that quality, efficiency and support at such a confusing time.)

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@bigfootx2

Also, I wish you the best. I never took Tamoxifan, it made my RA worse and I had an allergic reaction. So 12 years no other treatment than the i itial chemo. Really, sending my best.

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Thank you. Keep us posted.
Prayers 🙏🏽 for you also.

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@callalloo

Hi Moniguen, I assume that you're referring to the study that I mentioned questioning whether second and later breast cancer are in fact recurrences (of the same origin) or unrelated events. I'll try to find the study and, if I do, post the name and author(s). I read it during a whirlwind of trying to learn whatever I could upon being surprised to be diagnosed with breast cancer. It was a surprise as the only incidence in my family of ant cancer was father's prostate. [Interestingly, my oncologist thinks that prostate cancer being in my nuclear family, while not breast cancer of a female, might be of interest as both are hormone-sensitive. That's just his musing after treating cancer breast cancer patients for nearly 30 years.]
As to the study, the oncologist who headed seems to be rethinking how and if breast cancer can metastasize in a distant part of the body years after its first appearance. Cancer is a quixotic enemy. One woman I read about on a Mayo Connect thread had cancers in both breasts, with one being estrogen positive and the other estrogen negative. I don't recall if they were concurrent though.
For what it's worth, I found learning as much as I could, as soon as I got the diagnosis, enabled me to get better use of the doctors' appointment times. They didn't have to go over the very basics and terminology and such. That was a big help and we got right to post-surgical treatment plan. I relied on the OncotypeDX risk profile and am glad that we had that extra data in hand.and hope every woman facing this challenge gets that extra data.
Thank you for posting and don't underestimate good news when it has just as much chance of being true. The diagnostic technology is great but not perfect and our bodies have all kinds of odd things that self-resolve or were 'artifacts' generated by the tech equipment that aren't seen again.

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Thank you for reply.
Agree on every word you said I have also checked all searches, that coming my way.
I have noticed, the descripancy in thereports not very cleared and have some contradiction.
I asked for OncoDX. test, and tumour marker. Was willing to pay for, because here in
Canada all protocols treatments are under government insurance.Was refused
because I didn't have chemo !!! I also was surprised about my cancerous lamp, I have spotted last year at the age of 80.No history of family cancer.Only my benign nipple discharge more than 15 years ago. Decided to go only for bilateral lumpectomy and watch.
At older age the cancerous cells slowly develop.
Started Tamoxifen ( hormone therapy for ER positive)
I went on for holistic treatment ( Mistletoe injection), that suppostedly support immune
system. Will see result.My cancer is resent surprise for me!!!
Regards

Editor's Note:
When looking for and evaluating complementary therapies, please refer to NIH's National Center for Complementary and Integrated Medicine (NCCIH) website https://nccih.nih.gov/

In the section "Health Topics A-Z" current therapies and conditions are listed explaining the most recent evidence, cautions and potential of future studies.

Here is their information on
– European Mistletoe https://www.nccih.nih.gov/health/european-mistletoe
"European mistletoe is not a proven cancer treatment. It should not be used as a treatment for cancer outside of clinical trials."

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@bigfootx2

Hi thank you. I am going to look for a second opiomion for sure. I am not very good at advocating for myself. Not like for my kids. I would feel better with a PET scan. Would have to find a different doctor

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You should stand up for yourself because of your kids. You want to be around for them as long as possible. So ask questions, take notes, audio record appointments on your phone and definitely seek 2nd and third opinions. You are just as deserving as every other woman going through cancer.

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Darn, the OncotypeDX thing bothered me since the test specifically precludes anyone who has had chemo or radiation. So not having had chemo made you eligible, not ineligible, for the OncotypeDX. Either your doctor or insurer needs to be better informed. The OncotypeDX test was very reassuring to me and the customer service reps were inordinately patient. I was even able to get more-unusual questions answered by one of the science staffers. It helped me correct my own oncologist.

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PS Where did you get the mistletoe injection? Is this standard protocol in Canada? I've only seen it mentioned as something given in Europe and would like to hear more about it,

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@callalloo

Darn, the OncotypeDX thing bothered me since the test specifically precludes anyone who has had chemo or radiation. So not having had chemo made you eligible, not ineligible, for the OncotypeDX. Either your doctor or insurer needs to be better informed. The OncotypeDX test was very reassuring to me and the customer service reps were inordinately patient. I was even able to get more-unusual questions answered by one of the science staffers. It helped me correct my own oncologist.

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The main reason the Oncotype Dx is used, is to determine whether you would benefit from chemo. Most of us have the Oncotype Dx before deciding whether to have chemo or radiation. There is not much point in having a test to help you decide on chemo, when you have already had it!

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@callalloo

PS Where did you get the mistletoe injection? Is this standard protocol in Canada? I've only seen it mentioned as something given in Europe and would like to hear more about it,

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No, Mistletoe isn’t standard and it isn’t anywhere in the Canadian protocol treatment . We have here CCNM integrative cancer treatments. (Canadian college of naturopathic Medicine )
There are by appointment
naturopathic doctors.
T he recommendation from them is not intended to interfere with conventional medicine treatment!
I am buying Viscosan M (Mistletoe) from the doctor there. It is Helixor mistletoe
therapy for tumor patients.
Yes. it is implemented in treatment in Europe, particularly in Germany .
About Onco DX test I can’t get . Not clear reason why . But my genetic mutation (not genomic) test is normal .
I am trying to change the onco doctor.
So far, my treatment only Tamoxifen and periodically scheduled Mammograms and MRI
tests.
If you need more info , please contact .
Thank you 😊 .

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@windyshores

The main reason the Oncotype Dx is used, is to determine whether you would benefit from chemo. Most of us have the Oncotype Dx before deciding whether to have chemo or radiation. There is not much point in having a test to help you decide on chemo, when you have already had it!

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Your reply is much clearer than from the doctors .
I have learned about the OncoDX test after the operation has been done, and after my pathology report discussion with surgeon about the treatments.
Wasn’t mentioned about OncoDX test.
Apparently, wasn’t enough evidence for chemo necessity.
I declined both ( chemo and rad)
Now on Tamoxifen. The mammogram s and MRI
has been scheduled.
I am feel positive toward
Holistic naturopathic treatment .
😊

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