Single Hormone Receptor Positive -> ER+/PR-/HER2-

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.

Mammogram said remaining breast is good, yeah. Tomorrow the yearly oncologist visit.

Murfy - No, I don't think so. My MO will also follow me while I am on the AI but after that no.

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.

Moth, thanks for sharing those guidelines. Suggests insurance will pay for those yearly visits, should I choose to continue them.

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.

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.

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.

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. 

Meow, is the 75% percent of all occurrences happen before 7 years For pr-

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!

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?

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/

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.

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!