Has anyone had a change in Receptors? I previously had Her2 Positive and now the sample from my breast surgery is Progesterone receptor Positive 100% and Estrogen receptor positive 2-5%. My Oncologist is completely at a loss as to what to do. She asked two colleges and got two different answers! No help. At the moment no meds (which I don't like) and waiting for scans on Feb. 28th. The hip tumor has been stable for a long time.
Cheers, June S.
My oncologist have never done any further testing from the original biopsy so I don’t know how he would know if mine had changed. I hope they can start something for you soon. Keep us in the loop
Hi Sarcie: Well because my tumor in my breast started to grow and ended up pressing on the skin on the underside of the breast, I had radiation to try to slow it down. It burnt the skin of course at the tumour site and then it broke open. So I had a fungating wound that would not heal.
I was referred to a wonderful oncology surgeon who removed my breast and several lymph nodes and feels she was able to get all the disease out that was in that area. Of course I still have cancer in my hip which has been stable for years. For whatever reason hasn't changed. (It is inoperable because of the location.)
A sample of the tissue removed during the surgery was sent away for testing and the report came back saying it was not Her-2 as diagnosed when the tumor was first biopsied (Dec. 2012) and was treated as such until now.
I guess when the tumor started to grow in June 2019 it was because it had changed form and now is listed as Estrogen Receptor: Positive (2-5%, strong)
and Progesterone receptor: Positive (90-95% strong.)
That is how we found out about the change in the cancer.
My oncologist was totally baffled and says this is rare. I am not so sure. She has no idea how to treat this and is waiting for a CT scan and a bone scan Feb. 28th.
I am concerned as she feels my current treatment of Ibrance and Fulvestrant won't help against this new disease so I am taking nothing until the scans and I see her next. That is a whole month without meds. I don't want to give the cancer a chance to develop again.
I have written here before I don't have a lot of confidence in my Oncologist and unfortunately there is no one else unless I go to a different city. I will get a second opinion in any case.
Long answer to your short question. Thanks for replying to my query.
Cheers, June S.
Hi June,
That's so interesting...and unsettling, I'm sure, so I'm sorry about that...
I understand that hormone receptive becomes "unreceptive"/triple negative, fairly often. Is what's different about your that it's still highly progesterone receptive, but the estrogen receptivity has decreased so much? I imagine this is the case...?
With my initial diagnosis/biopsy, the tumor was highly receptive to both estrogen and progesterone. When I was dx metastatic 5 years later, that new tumor was moderately estrogen receptive (50% give or take?) and 0% progesterone receptive. I think I recall my doc saying that it was the ER that mattered in terms of taking Ibrance + AI. Based on your comment, this is correct.
I don't know where you go for treatment, but since this is rare, perhaps you can find a specialist for a second opinion?
Take care, and please do let us know what you learn/do...
Lynn
Hi June....I just happened to check out breastcancer.org and saw a recent study re: hormone receptivity...It looks like only 1.6% of BC is ER-/PR+...the title of the study seemed to be asking if this was a distinct sub-type. They often lumped together "single hormone receptive cancer" patients, i.e. you (ER-/PR+) and me (the opposite...12.2% of BC patients). The study does not offer any advice re: treatment, etc. But this does tell me that you really might want to seek out advice from any docs who might be specializing in your situation.
Take care,
Lynn
I will have to check the original records to make a comparison. The current lab analysis says HER-2/neu: Negative [score 1+]
Comment: Estrogen is positive in one small area of the tumor representing >1% and hence positive. This case has been reviewed at departmental QC rounds and represents consensus opinion.
I have gone three weeks at a time not taking my Ibrance due to low neutrophils so a month off shouldn’t be harmful. I certainly understand being upset as any break from treatment is scary. I think your oncologist needs to be sure that continuing your present treatment doesn’t make the new type grow. I hope you get your answers and second opinion.
Thanks Sarcie. I had only started on Ibrance with Fulvestant in November. After one month Ibrance had dropped my immune down. It took 4 weeks to get it back up and by then the surgery was planned so we postponed the Ibrance. I still was kept on Fulvestrant.
Now she has dropped the Fulvestrant as well. According to the nurse it isn't effective against the new cancer.
Further complicating the situation is that .we don't know what to treat as the surgeon is sure she removed all disease she could see. Great. However I still have bc on my left hip.
My main concern is leaving it untreated. I am on high alert now because of all the changes and not having any confidence in my oncologist. She continually 'drops the ball.'
I am not usually a critic. She is very nice and doing the best she can however she appears to be overworked and her nurse isn't the best either.
Nothing is going right at the moment. I will get a referral. I am in Ontario Canada and today, Monday, is a holiday.
Sorry to rattle on. It is just a bit complicated!
Cheers, June S.
Hi June , I am also from Ontario. May I ask what clinic you go to. I also am not real happy wit my oncologist.Theresa
Hi Teresa; I live in Barrie and go to the Royal Victoria Hospital or as it is now called the Regional Health Centre.
cheers, June S.
I’m in Nova Scotia. You aren’t rattling on at all. This is all so confusing to all of us. May I ask when they did your surgery?
My breast cancer was not detected until it was found in my hip. The biopsy on my hip said Breast Cancer which shocked all of us. My MRI showed cancer in my hip. The ct scan did not pick up any breast cancer so I was told it was either lymphoma or myeloma. When the biopsy came back they then sent my fir a couple of diagnostic mammograms. The normal mammogram showed nothing so they used a different machine (?) and then found a small lump it was not detectable by hand. I did not have a mastectomy as it had already spread to multiple bone locations.
This is going to sound crazy, but can they re-biopsy the tissue? You are going by that report. Can you get a second set of eyes on it?
I am not sure what you mean. I had my breast removed because of a tumor. They sent a sample away to be examined. Hence the report of a change in the cancer.
Cheers, June S.
I mean have a second doctor who does biopses look at the tissue to confirm that is what it is. Since it is different. When something is different like this, is that wise to do?
I am not sure about a second report on the tissueI would think it has been disposed of. My surgeon says she got all the visible disease including lymph nodes under the arm with the breast surgery. I don't like the term but they called it a 'toilet' mastectomy. Meaning they took everything in the area.
Hi 8576, it is rare for those tissue samples to be thrown away. I would agree with AvidBookLover and see if you can get a second opinion on the tissue sample that was taken from your breast tissue. Sometimes another clinic will come up with new results from the same sample. When I was first diagnosed, I had all my tissue samples retested a month or so later.
Yes, this is what I clumsily was saying! And they still have my tissue from years ago. If they are thinking radically different treatment, I would want confirmation. Reporting is only as good as who read the scan!
Thanks to you both for the info. The things we don't know! That is why this site is so good. I will ask.
June S.
I just looked at the American Cancer Society’s page, and they show that pathology samples have to be kept for years due to federal law (see subsection “How long are pathology specimens kept?”): google.com/amp/s/amp.cancer...
This might differ for Canada, but I doubt it. I would think it would be incredibly neglectful to throw away a patient’s tumor samples, especially since that determines the next course of treatment. If the oncologist doesn’t know how to proceed (and they’re human, so that happens), THEY should be recommending a second opinion.
My orig was from 2012 and was tested in 2019 for genetics and more.
I am so grateful for your correspondence and everyone here. So if the second lab comes up with a different report how do we know which is right? It would beg then for a third test. I guess it would be good if they came up with the same results.
I must say this whole thing is way above my 'pay grade'! I would have hoped the health professionals would take care of this.
Cheers, June S
My Oncologist did ask for a second and third opinion from her colleagues. They came up with two different answers on how to proceed!
Didn't help. I will be seeking advice from a larger hospital close to me.
Cheers, June S.
Hi June, that’s a very good question about what happens if the second lab test differs. I’m honestly not sure, since my second opinion agreed with the first, and I’m admittedly basing this off my own limited experience. I would think if that happened, a third opinion would be wise, like you suggested.
On a side note, like you, I don’t have a lot of faith in my oncologist but am limited due to my location. I just requested switching to another oncologist at the same clinic. Is that an option for you? If we’re going to have the misfortune of being “lifers,” we should at least have oncologists we can trust!
Agreed! Unfortunately that doesn't always happen. I am not sure but I don't think there is anyone right now. Seems a lot of the oncologists are switching there medical focus to other areas other than breast. My previous oncologist whom, I like very much, switched to lungs and liver as did another one in our unit. It would be interesting to find out why. I will be looking for someone else for sure.
Cheers, June S.
My breast cancer changed just as you have described. I remained on Herceptin until my oncologist decided to try a cocktail of drugs. I am hopeful that this will stop further progression of my disease for now. There are some new immunotherapies that look promising. Get a second or even a third opinion if you need to . Best of luck.
Thanks so much. Good info. I am getting a second opinion just because there are so many unanswered questions.
May I ask were your secondary cancer is located and did it remain unchanged or did it also change?
Cheers, June S.
Yes, my receptors changed from all positive to 1 being negative and the others remaining positive. My cancer returned to my left breast and lymph nodes that were not removed initially. I have had cancer move to my upper spine, to a bone connecting my upper right leg to the hip, nodules near my liver and lungs. My cancer was biopsied. I was originally diagnosed with Stage 2 after I found an unusual lump. Once I had a PET scan, the cancer had
metastized to my spine and multiple lump nodes. I had to demand being treated since I was starting out at Stage 4 Metastatic breast cancer. Please don't give up. I was diagnosed in May 2011. I hope you find the answers you need. Keep me posted.
Hi
It is not often tumours get biopsied once theyve spread. Thus we dont know how many incidences of mutation there are or the types.
Nevertheless, a second opinion seems like a logical thing to do.
Good luck xx
My oncologist says it’s common for receptors to change. In my case, my original tumor was Er/pr+/her2-. Later, my liver tumor was Er+/pr -, then skin mets were triple neg, then liver tumor retested after 2 years was Er/pr+/her2-. If I show triple neg, he treats me as that since it’s more aggressive and fewer treatments are available. I am waiting on foundation one results to see what is effective on my liver tumor going forward. In your case, the low Er number with the high pr positivity is confusing and I could see why the doctors might not be on the same page. It all seems like guess work to me. Can they do foundation one testing on the tumor?
Thanks for reply and interesting information. I don't know about the Foundation testing. Will see when I get a referral to someone.
Cheers, June S.
May I ask where you live? I am in Ontario Canada. I sure hope that it is not so uncommon.
June S.
I'm in Florida and go to Moffitt Cancer Center in Tampa.
Hi! Keep me posted on this. I’d to hear what they come up with. My status changed 2 years ago. Still Her2 but ER 10 and PR + not sure what percent. But I would love to hear advice on how they treat dominate Pr and barely ER. I take Zoladex and Arimidex right now. Would love to know if on the right track. 😀
Yes, I was 100% ER/PR + eight years ago at diagnosis, then it switched to triple negative at the progression to the liver last year. Been on IV chemotherapy and immunotherapy since with good results. I've read that while unusual, not all that uncommon. There's research out there on it. Maybe get another dr. opinion? Best to you!
When I was on Ibrance for only three months, I needed to have an invasive surgery so was taken off the Ibrance. Instead of the one month recovery period, it actually took four months and I had holes in my leg (have an ugly looking scar now where they cut the tunnels which were in the inside of my left upper groin.) Before putting me back on any cancer drug, they did an ultrasound where they found a new tumor that grew in my breast far from the original tumor. I was then told that I would have to have biopsies again. I was confused and said why you already know what type of breast cancer I have which is ER+/PR+ and Her2-. She then told me that my second tumor could be a different type. I was shocked. She told me it is more common that you think and that the breast cancer could change or the new breast cancer tumor could be a different type and if so, the treatment would have to change. I asked her what was the worst case scenario and she said the new tumor could be triple negative which would then require chemo and radiation. Luckily, the biopsies came back that it was the same type of cancer as the original tumor so my treatment remained the same. I never knew you could have two different stages of breast cancer in the same breast. (Constantly learning something new). Happily though, it was the same so I remained on the same treatment except she took me off the Ibrance and put me on Verzenio instead.
Was tested in 2000 when first diagnosed and again in 2017 with the MBC diagnosis. Have not been rechecked since . I think this is a very interesting thread and could be important to all of us. Maybe they retest if treatments stop working. Keep us informed. I go back to Moffitt in June and hope to remember to ask Dr. Khong. We all need to know about this. Blessings Hannah
Thanks for the information. Helps to understand some things at least. This Cancer seems to be a very complicated disease. Not easy to fight as it keeps reinventing itself, but the researchers are coming up with answers. Thank heavens!
Cheers, June S.
Breast Cancer on Brain.
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