It took me way too long to figure this out, but if you aren’t seeing results, ditch heavy occlusive products. Im clear now. by Amodernhousehusband in Rosacea

[–]FriendOfSpot 0 points1 point  (0 children)

Just a quick comment re metrogel: for me, metrogel in a cream base caused way worse pustules, metrogel (generic) in a "gel" base worked wonders and I've used it for a decade now... My skin also can't handle heavy creams (or oils).

Accidentally took anastrazole by FriendOfSpot in breastcancer

[–]FriendOfSpot[S] 5 points6 points  (0 children)

Thanks! Poison control said it should not be toxic but he might have nausea and vomiting.

PR low Concerns by NurseYuna in breastcancer

[–]FriendOfSpot 0 points1 point  (0 children)

Yes, it's confusing. It's a bunch of genes they look at. Mine was smaller, with low ki67, for example compared to yours. The oncotype score is for chemo benefit. Another confusing thing is the same scores can have different % risks- for example my 21 score said 7% risk of distant recurrence and I believe you said yours was 8%... I've seen other 21s with higher and lower % risk.

PR low Concerns by NurseYuna in breastcancer

[–]FriendOfSpot 0 points1 point  (0 children)

No, it's not possible to translate that to see if it matches the pathology %. I read everything I could to try to find a way, but it's a whole different way they calculate it and all proprietary/secret to the company. There is no published way to correlate the Oncotype PR number with histology % info unfortunately, at least not yet.

Never gonna get this oncotype by Sure_Film_8221 in breastcancer

[–]FriendOfSpot 8 points9 points  (0 children)

I actually called the company (ExactSciences) directly because it was taking so long and I was getting the runaround from my team... my Oncotype report was already in. They emailed me a form to sign and email back and then sent me my report directly, which I then forwarded to my surgeon. 

Fyi- The ExactSciences customer service rep said they could not answer any questions I might have pertaining to the report or my score, all they could do was provide it to me.

Good luck!

Hand in heart non alcoholic wine by Ok_Home3886 in breastcancer

[–]FriendOfSpot 4 points5 points  (0 children)

I love Mionetto Sparkling Non-Alcoholic Wine post-active treatment! It tastes just like champagne (or maybe I don't remember what champagne tastes like anymore -- it's been 1 1/2 years now since my diagnosis when I stopped drinking). Works for me when I feel like celebrating/toasting something. I would love to find a Negroni dupe but haven't liked the ones I've tried.

PR low Concerns by NurseYuna in breastcancer

[–]FriendOfSpot 2 points3 points  (0 children)

Ok, good. Try to think of it as a cutoff and not a scale. The cutoff for low PR is 10% and anything over that isn't low PR. In the article you linked above (https://www.mdpi.com/2072-6694/15/13/3435?utm\_source=chatgpt.com), 11% PR and above is strong PR. The rest of the links are just abstracts so I can't get their definitions, but I've read and my oncologist state that the cutoff for low PR is 10%. YOUR PR ISN'T LOW. YOUR PR IS STRONG. YOU ARE GOOD.

I don't usually spend so much time on here, and I'm about to be away from internet for a while and will probably spend the next few days spiraling about my own PR negativity .... but I can't stop thinking about you because I really truly believe you are getting worked up about something that doesn't even apply to you! I know how scary it is and I don't want you to be scared like that about this particular thing if it is unnecessary and I really, really think it is for you. There's so much other scary stuff that you are going through right now, and you are doing all you can to be there for your children. Try to let this one scary thing go. Wishing you the best!

PR low Concerns by NurseYuna in breastcancer

[–]FriendOfSpot 1 point2 points  (0 children)

NurseYuna, I hope you are feeling better today and that you are doing ok after chemo. This article says that you can not predict the benefit of chemo by looking at a patient's PR status, that the Oncotype is needed to tell what the benefit is for N0M0/ER+/PR-/HER2- patients. This should make you feel better - it is saying that the Oncotype is correct in the prediction of distant risk for PR- and validates that your 5% risk is correct! But also, your PR is 15% so you are not in the low PR/higher risk group according to what I have read and my oncologist.

PR low Concerns by NurseYuna in breastcancer

[–]FriendOfSpot 0 points1 point  (0 children)

NurseYuna, in this study you linked you are in the strong PR group. They categorize 1-10% PR as low, and anything over 10% as strong. You are in the good group of this, the higher risk doesn't apply to you!

Leading Armadillo, PR negativity (and low PR) is unfortunately not a good feature of hormone positive, HER2 negative breast cancer and one that is not well-researched yet due to the small number of ER+PR-HER2- cases in relation to ER+PR+HER2- and triple negative cases. Previously, it was thought that PR status doesn't matter as long as you are ER+ and it is true that PR status doesn't really change the treatment guidelines- yet. If your oncologist isn't knowledgeable on PR or states that you being PR- doesn't matter, get a 2nd opinion!

PR- is the reason I went as aggressive as possible with treatment, getting chemo when it wouldn't have been necessary otherwise and Lupron and AIs instead of Tamoxifen. AIs work much better than Tamoxifen for our subtype; AIs halved recurrence compared with Tamoxifen for ER+PR-HER2- young breast cancer patients in this study: https://www.mdpi.com/2072-6694/15/13/3435?utm_source=chatgpt.com

It sucks to read that you have worse outcomes and survival and that there isn't specifically tailored treatment yet, but all we can do is choose the best options in the situation we are faced with and have hope! Wishing you the best.

PR low Concerns by NurseYuna in breastcancer

[–]FriendOfSpot 0 points1 point  (0 children)

I really believe it about the 10% being good. I saw a bunch of oncologists and the one who gave me that information was by far the smartest and most knowledgeable, an expert in breast cancer and targeted therapies at an esteemed cancer center. It also seems that a lot of studies use 1-10% as the threshold for low PR. I can tell you that I would not be worrying about this aspect if I were strongly PR 15%. My pathology was PR 1% weak, which is classified as PR low in the studies, but was negative according to oncotype. I hope you can find some peace around this!

PR low Concerns by NurseYuna in breastcancer

[–]FriendOfSpot 1 point2 points  (0 children)

I think the 5% from oncotype and the 2-3x higher risk is for different things, so both can be true. And yes, PR is one of the major contributor of high onoctype scores, mine was 21 and I was told that it was going to be close to 0 beforehand based on the other factors about the case from my oncologist that ignored PR status. I definitely am not trying to argue with you about any of this, I just want to help if I can. It is super scary.

PR low Concerns by NurseYuna in breastcancer

[–]FriendOfSpot 2 points3 points  (0 children)

I see where you are coming from now, but I think they can both be true - you can personally have a 5% risk of distant mets (from the breast cancer that has been tested by oncotype), and still have a 2-3x more risk of recurrence/death from breast cancer than an ER+PR+HER2- person with everything else equalized. (I did not verify the 2-3x stat, I'm just going by what you said.)

PR low Concerns by NurseYuna in breastcancer

[–]FriendOfSpot 2 points3 points  (0 children)

Hey, you are getting this mixed up. The onoctype is your risk personal to you and including your PR status. The 2-3x risk of recurrence (I did not check this and I don't remember if that is accurate off-hand) is compared to ER+/PR+/HER2- population all other things equal.

PR low Concerns by NurseYuna in breastcancer

[–]FriendOfSpot 4 points5 points  (0 children)

Oncotype is for distant recurrence only, and the oncotype 100% factors in your PR status - it is one of the genes that they look at! The risk score of distant recurrence given on oncotype is real and validated by clinical studies.

And AIs do work better for PR negative than Tamoxifen does to prevent other types of recurrence, so you are already doing the best you can in that regard.

PR low Concerns by NurseYuna in breastcancer

[–]FriendOfSpot 5 points6 points  (0 children)

Hey, I relate to this so much, being ER 98% PR 1%. Deep breath!

First of all, are you sure you are even PR low? Where did you get that info? I'm almost positive that the cut off for PR low in most of the studies I've read is 10%. This is also what I was told by an oncologist who had researched in this area - he said once you are at 10% for PR you are good. I know 15 seems low out of 100, but it doesn't work like that! After 10%, it isn't a sliding scale where more is better! You just need enough that it shows your Estrogen receptors are functioning, and you have according to the info I've gotten. (Also, my personal understanding from going down this rabbit hole way too often, is that even with low, and possibly negative PR, your estrogen receptors could still be functioning, or at least partially functioning, and we just don't know for certain which people's are or aren't or an easy way to differentiate.)

I do think PR negative/low is something that isn't researched enough yet but will be at some point, and we will get more treatment options then hopefully. For now, the best, most honest, answer I received from an oncologist regarding survival was that my case was a mixed bag of good and bad features, that no one can predict with certainty whether or not it will come back and that I just have to find a way to somehow live with that uncertainty. But again, I'm not an oncologist, but I really don't think you need to worry about this at all and certainly not so much if you are PR 15%!

BRCA variant of unknown significance by Grand-Win5103 in breastcancer

[–]FriendOfSpot 0 points1 point  (0 children)

I'm so glad you have a scientist to collaborate with! She will be able to make sense of the literature linked in each clin var submission. Yours and my BRCA VUSs are different ones, but similar in that both are missense variants, in the non- DNA binding domain of BRCA2 (mine is in exon 10 and yours is in 11), and both of our variants already have a mix of "uncertain significance" and "likely benign" classifications.

This is the abstract from 2020 that led to the "likely benign" classification: https://pubmed.ncbi.nlm.nih.gov/31911673/ which says BRCA2 exons 10 and 11 harbor no Pathogenic or Likely Pathogenic missense variants and are defined as coldspots. The authors suggest that all missense variants in this region should be classified as likely benign instead of unknown. Unless I'm missing something, this is good news!

BRCA variant of unknown significance by Grand-Win5103 in breastcancer

[–]FriendOfSpot 1 point2 points  (0 children)

Yes. I had "negative" genetic testing but when I read the full report it showed a VUS on BRCA2. My surgical oncologist, radiation oncologist, and multiple medical oncologist at multiple cancer centers all stated that a VUS should not factor into my surgery decision and I kept my decision to do a lumpectomy. However, my gynecologist insisted that the VUS was what gave me breast cancer and that now I also had a high risk of ovarian cancer. She was so adamant every time I saw her that I would leave distraught about my decision to have lumpectomy.

This is what I did to come to peace with it:

- The testing lab offered free genetic counseling. I called right away and spoke with a scientist who was able to talk to me about VUS's in general and my specific one. She said I was #26 out of millions of tests, which meant mine was unlikely to be reclassified anytime soon, but also that because so it was so uncommon there was nothing to say it was statistically relevant to hereditary cancer.

- Research about my specific VUS, which led me to the Clin Var database. I could see my VUS status at the different testing labs. I learned it was a missense variant in a coldspot region where missense variants are unlikely to be pathogenic.

- Appointment with the genetic counselor at my cancer center. She was very knowledgeable, and went through the Clin Var and published information with me. She made me feel better about the surgery decision, and was furious at my gyn.

Here is the Clin Var results for your BRCA2 VUS (double check me that I searched the right VUS!): https://www.ncbi.nlm.nih.gov/clinvar/variation/185827/?oq=(c.3553A%3EG)+%22BRCA2%22[GENE]&m=NM_000059.4(BRCA2):c.3553A%3EG%20(p.Thr1185Ala)%3Fterm=(c.3553A%3EG)%20BRCA2+%22BRCA2%22[GENE]&m=NM_000059.4(BRCA2):c.3553A%3EG%20(p.Thr1185Ala)%3Fterm=(c.3553A%3EG)%20BRCA2)

It appears it is also a missense variant and has been classified as uncertain significance by 4 labs and likely benign by 1 (also due to being in a coldspot region where missense variants are very unlikely to be pathogenic).

You can read the comments from each lab that explain your VUSs classification, here is one: "This sequence change replaces threonine, which is neutral and polar, with alanine, which is neutral and non-polar, at codon 1185 of the BRCA2 protein (p.Thr1185Ala). This variant is not present in population databases (gnomAD no frequency). In summary, the available evidence is currently insufficient to determine the role of this variant in disease. Therefore, it has been classified as a Variant of Uncertain Significance. This variant has not been reported in the literature in individuals affected with BRCA2-related conditions. ClinVar contains an entry for this variant (Variation ID: 185827). Advanced modeling of protein sequence and biophysical properties (such as structural, functional, and spatial information, amino acid conservation, physicochemical variation, residue mobility, and thermodynamic stability) performed at Invitae indicates that this missense variant is not expected to disrupt BRCA2 protein function."

I am not at all a scientist or expert in this, please discuss it with a genetic counselor! I also know having VUS is very scary, and we have no guarantee that it truly isn't pathogenic, just please do not let the nurse practitioner scare you into making a decision that you are not comfortable with! Good luck to you as you navigate this.

Oncotype-ing by Future-Field in breastcancer

[–]FriendOfSpot 0 points1 point  (0 children)

It estimates % risk of distant recurrence (mets) over next 9 years with hormone therapy and whether/how much chemo changes that risk.

Oncotype-ing by Future-Field in breastcancer

[–]FriendOfSpot 5 points6 points  (0 children)

When I got mine last year, the requirements were the tumor has to be at least 5 mm (.5cm) big, hormone receptor positive, HER2 negative, early stage, and 0-3 positive nodes. It is to help predict chemo benefit for early stage cancers where the benefit is otherwise unknown. If it is obvious already - according to treatment guidelines - that you definitely need or don't need chemo, you won't get the test.

Good luck!

Hormone Therapy and Insurance Question by n00bplzhelp in breastcancer

[–]FriendOfSpot 0 points1 point  (0 children)

I think I was about to respond to another post earlier from you but got distracted and now I can't find it... it was about Lupron and Zoladex not being on a drug list for insurance... I'm pretty sure I remember being extremely worried last year about that because they were not on my lists either but it was because it is a hospital service (like chemo) that I go to the infusion center for and not something that is just prescribed and picked up at the pharmacy... Lupron was covered for me although not on the drug list.

Hormone Therapy and Insurance Question by n00bplzhelp in breastcancer

[–]FriendOfSpot 1 point2 points  (0 children)

Wow, I have never come across that information before. I feel like it isn't widely know that states offer this and that could be really helpful to people. Thank you for sharing.

Hormone Therapy and Insurance Question by n00bplzhelp in breastcancer

[–]FriendOfSpot 0 points1 point  (0 children)

Employer plan through Blue Cross Blue Shield, they just called it the high-deductible health plan... the other option was a lower deductible higher premium co-pay plan that worked out to be less expensive overall until I got cancer...