Single Hormone Receptor Positive -> ER+/PR-/HER2-
Comments
-
I have my mammogram in a couple hours, tomorrow I see my oncologist, yearly visit. I have aches and pains but I don't think it is mets. The pains come and go sometimes in different spots.
I guess I will let him know but I don't think it will be helpful. I have alot of stiffness it seems to be influenced by the weather.
0 -
hi meow,
I agree cold weather doesnt help. I have pain as you describe. It never stays in the same place longer than a minute. Dull achiness is best I can describe. Then it stops, resurfaces later, somewhere else. No pattern whatsoever at this point.
I wish you the best for good health for both appointments.
0 -
Patsy - I hope the visit went well. I haven't had my first post-chemo meeting with the MO, but I looked up my plan online and it said no routine screening or tests.
Meow - Hope the visit goes well - I can't imagine mets would ache variably. But I also think it's part and parcel of this disease to always wonder.
0 -
Mammogram said remaining breast is good, yeah. Tomorrow the yearly oncologist visit.
0 -
I still have bi-annual visits with MO as long as on AI, but will there continue to be a yearly visit after that....like, forever?
0 -
Murfy - No, I don't think so. My MO will also follow me while I am on the AI but after that no.
0 -
The survivorship guidelines are here for anyone interested in what the main organizations are suggesting for frequency and type of follow up
http://ascopubs.org/doi/pdf/10.1200/JCO.2015.64.38...0 -
It depends on your clinic. A couple friends of mine went to a different clinic; the triple negative friend was dismissed after 5 years (when her recurrence risk went way down), and the estrogen positive friend (who took Armidex for 5 years) was dismissed after 10 years. I go to a different clinic and am still seeing my MO once a year. I asked him about this, and he said that I could decide as to whether or not I wanted a yearly check-in, so I decided to keep going back. I do it 6 months after the yearly physical with my GP.
0 -
Moth, thanks for the link! I actually told another friend awhile back " I need to PM moth, she always posts very helpful links" i think you posted some good links on exercise too
I also think it just depends. I was told i will see my MO annually but i am seeing her every 3 months for the first year. A friend of mine who has had no signs of recurrence for 13 years still goes every year and has tumor markers drawn. I mentioned it to my MO and she said nope, not within the guidelines. She has been off her tamoxifen for 9 years.
Nice pic ruthbru! Great news on your mammo meow. Wishing all of us a healthy new year.
0 -
Moth, thanks for sharing those guidelines. Suggests insurance will pay for those yearly visits, should I choose to continue them.
0 -
All went well. Now, after having had this first 6-month checkup, I have a better idea of the shape of my monitoring by my MO. I'll have a checkup every 6 months - this time I saw his medical assistant, a nurse practitioner; next time in 6 months I'll see my MO himself. Each time they'll do a blood draw to check liver/kidney function, Vitamin D, blood count, breast cancer tumor markers, and other indicators. Also a breast exam and discussion. I'll also get my every-6-month Prolia shot. I asked about additional screenings - and yes, I do have to have a dexa-scan every year (we set it up for the same day as my June checkup); no, we don't do extra scans/screenings looking for possible METs. Because my cancer was so early, small, non-aggressive, and localized, it is not indicated. However, I am very vigilant about noticing anything that doesn't feel/seem right - they want me to report ANYTHING and then we go from there. My MO's people are incredibly responsive and good about communication, as is he, so I feel well-watched-over. They took tons of time with me, answered every question, and I feel great.
The screenings we DO do every 6 months will be, of course, my mammograms and MRI's (alternating every 6 months).0 -
My wife's protocol is similar to PatsyKB's. For the first two years, she will see the MO every three months. At each visit, they will do a blood draw to check liver/kidney function and tumor markers. She is also on the alternating mammogram/MRI schedule (she had a baseline of each done earlier this month), Zometa infusions every 6-months (for two years), and bone destiny scans every 12 months or so. She had a PET scan done back in early September, but this wasn't part of the normal protocol.
After two years, she will go on a 6-month schedule until year 5, which then starts once a year check-ups, at least until she has completed AI therapy. I'm not sure what happens after that. I assume they will do the blood work at each visit through year 10.
She was taking Letrozole but had a lot of aches and pains so he switched her to exemestane, which she hasn't tried yet.
0 -
I’m curious, are there specific guidelines for checking tumor markers? My MO won’t do them because he says that they aren’t done for stages 0-2. Does that sound correct to you? Thanks!
0 -
My wife was staged 1A (6mm tumor). I wasn't expecting the MO to draw blood for tumor markers, but he said that was the protocol that he followed, and not anything specific to my wife's tumor biology, including the low PR. It appears there are inconsistent protocols followed based on other posts I've read.
0 -
april1964, although my cancer was very early and small, I'm thinking that the protocol my MO follows with regard to testing for tumor markers each time I see him (every 6 mo) has to do with the fact that my cancer was IDC (invasive). Or maybe it's just what he does routinely for everyone. Just a guess.
0 -
Patsy - I think my plan says no routine testing and I had IDC (my tumor was 1.2 cm and pretty aggressive). I don't see my MO for the first post-chemo visit until beginning of February, though, so I'll ask his reasoning then.
0 -
Patsy, I had IDC and we don't do tumor markers here for early stage. They're not recommended in the evidence based survivorship guidelines from ASCO.
DebAL - lol, you're welcome! I have bookmarked a whole lot of evidence based resources & am always happy to share
0 -
Ok, I read to page 5 and with not ONE post about the difference between PR+ and PR-, I feel I need to comment. If it's already been explained in pages 6-11, that's great, but here goes
Low PR value = Luminal B
High PR value = Luminal A.
Some tumors are heterogenious so depending on where they biopsy, it could have low PR while another area could be high PR.
Luminal B does better with chemo, Luminal A does not.
I had a very low PR value when I got my biopsy (around 5%), but my Oncotype found it to be higher (around 30%). I ended up getting the Mammaprint which actually finds the subtype of the tumor and lo and behold I was Luminal A, which was a relief. (no chemo). Studies show Luminal B tumors recur more frequently and have worse survival stats.
Here's a chart below.
0 -
Just saw my oncologist yesterday after 7 years with my situation instead of 23% recurrence rate he thinks it is now below 10%. 75% percent of all occurrences happen before 7 years. The AI drugs proving effective for most er+ pr- cases.
0 -
Meow, is the 75% percent of all occurrences happen before 7 years For pr-
0 -
I am not sure what he was looking at but most er+ and pr- occur early similarly as triple negative. He looked at something I couldn't see but told me it was less than 10%. I think er+ pr+ are the cancer that occur later. April, in general every year that goes by is good news for everyone. Hopefully, the newer medicines will show even better statistics.
My oncodx was 34.
0 -
Meow13, I think my Radiation Oncologist said that Single Receptor folks like us are a 15% subset and she was honest with me in saying that it makes us "special" and that it's not necessarily great to be special when it comes to cancer. She is wonderful - candid and honest, which I like. So I am, like you, very watchful, knowing that the whole ER+/PR-/HR2- combined with Invasive thing isn't particularly wonderful. Focusing on the positives each day and doing everything I can to keep IT at bay. Also, I focus on what my MO told me about AI being twice as effective as Tamoxifen (I'm postmenopausal); and his unspoken certitude that despite a "high intermediate" 24 on my OncotypeTX, chemo was not worth the risks, given my cancer profile (grade 1, stage 1, non aggressive, no nodes, etc.).
When I asked my MO's NP at my check up this week about what the highest-recurrence-risk timeframe is for Single Receptor as compared to Triple Negative she said that my MO and others consider the first 5 years to be the years of highest risk. Triple Negative is 3 years - so we actually have a longer period.
She also confirmed that I'll be on Letrozole - as long as I continue to tolerate it so well - for 5 years and then we'll reassess; of course we'll keep reassessing every 6 months. If I continue to tolerate well at 5 years (and assuming no recurrence), I'll just keep taking it - I'm not going to risk recurrence just to get off the meds.
In the meantime, I refuse to obsess about long-term fears and worries and what if's. It's about today, this week, this month, maybe this year. And making plans for the future - family, travel, fun, personal goals - NOT cancer.
Onward into 2019, ladies and gentlemen! Here's to HEALTH!0 -
p.s., Meow13 - Good news from your MO - 10% is definitely better than 23%!
0 -
Question about Luminal A & B - I don't believe my cancer was tested for that. I had the OncotypeDX done but not Mammaprint. Is that why? Or might that info be hidden somewhere in my other reports and I just need to go search?
0 -
thank you all so much for your responses
0 -
Patsy, if you are PR- that is Luminal B. The charts I posted, show rates of recurrence for both Luminal A and Luminal B. You will see Luminal B as the Green Line and Luminal A as the Pink Line. I just think y'all should research statistics on Luminal B because this is what we're talking about here.
The Mammaprint does two tests as a package (mammaprint and blueprint) It basically rechecks the tumor for PR value twice to see if one is Luminal A or B. I think in my case, the biopsy got a portion that was lower in PR value, thus the 5% but both Oncotype and Mammaprint had higher PR value and thus I was considered Luminal A.
If you do research on the subtypes of tumors, you will find a lot of research done on them, you just have to start using the right terms... Luminal B is PR-, higher Ki value, etc.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4167319/0 -
Regarding luminal A vs luminal B, this recent 2018 paper (link below) clearly specifies in their data analysis of 2 large clinical trials that luminal A's are ER+/Her2- cancers that are grade 1 or 2 (or Ki67 <14%) and luminal B's are grade 3 or Ki67>14%. They showed that many PR- cancers are low grade and would be classified as luminal A with better outcomes, whereas mine would be classified as luminal B, as it is grade 3 with Ki67 of 55%.
I know many of you have shared your concern about my high grade cancer in spite of having high ER positivity. After extensive genetic analysis, I've discovered that I have a mutation in my FGFR2 gene. This mutation causes amplification of estrogen action. In the absence of PR, which naturally 'brakes' or attenuates estrogen action, my estrogen is running amok. The GOOD news, hopefully, is that the AI I am taking will get rid of any estrogen and slow down cell proliferation. The BAD news is that I should probably stay on AIs forever.
Gotta love science...
0 -
One cannot assume that PR- means Luminal B. It seems to be much more complex than that. I know quite a few PR- who are Luminal A (low ki67). I dont know whether I am Luminal A or B, probably B but it certainly isnt clearcut. BTW the new 2018 breast cancer staging takes Er and Pr status (separately) into consideration. Most of us might find our staging has changed under the new guidelines.
0 -
Yes! Here is a link to the new staging and it appears I am now a 1A. I'll take it!
1 -
Thanks for adding it. I am 3B instead of 3C. which doesnt change a thing but at least now I am included in "early stage BC" group. lol!
0
