Also joining the 'club'

twistygirl

I was diagnosed on St. Patrick's Day with IDC in my right breast. My lucky day, right?

In 2020 I had my annual gyn visit at the end of Feb. And the doctor did my breast exam. All was fine. Then Covid hit and everything closed, so I didn't schedule my mammogram for March. Then I got the virus in July… then we were trying to have my daughter's wedding in Sept. Well, I never went for my mammogram in 2020. I did a gym challenge in Jan. of this year and lost 20 pounds from Jan - Feb. and when I had my breast exam at the gyno in Feb, BAM, that lump just popped right up off my chest because my breasts are like little flat tea bags now! No fat at all! So don't I feel stupid for not feeling it before and stupid for skipping my mammogram. So here we are.

It is grade 1, low proliferation (6% Ki 67 index), 8mm x 7mm. ER+ (80%)/PR- (0%)/HER2-. I am HOPING it is Stage 1a… but I have no idea if there is node involvement or not. (Don't I have to wait on the pathology on the tumor after surgery for that?)

I've had my breast MRI (no other suspicious areas detected) but I do have mild background parenchymal enhancement in both breasts. My bloodwork has been sent in for my genetics. (My mom had DCIS 25 years ago, no other cancer in our fam)

I've YET to speak to a doctor after all this time, though! I get my results released in my online portal so I've just been doing my own research. The last thing the doctor said to me on March 17th was "Well, the biopsy makes me very nervous, but let's pray it's not the c-word!" Of course Googling is good and bad. I've decided I'm Stage 4 with just weeks to live a couple different times after reading some of the studies!

I finally have my appointment with the breast surgeon (who did the biopsy) on Monday at noon. So I guess she will go over all the results 'officially' and lay out her recommendations?

There are a few things concerning me and I was wondering if anyone else has a similar diagnosis and could speak on these things:

• PR negative

• VERY dense breasts

• Tumor is in upper inner quadrant

PR negative. That is rare. I asked the nurse pathologist at my biopsy check up if that was unusual and she said 'not really.' Tho in my 'research' I have found that it is only 15% of breast cancer! That makes it NOT the usual. I read a few links from this forum that indicate that there are several subsets of the PR negative - and mine is low grade, low proliferation, so it SHOULD act more like ER/PR+ than the triple negative, right? But I also know that my tumor could have several different grades, right? Maybe ALL of it isn't grade 1?? And again, I have to wait until after surgery for that to be determined.

I have extremely dense breasts. I don't know my exact status - but when the doctor was doing my biopsy (she biopsied the left and it ended up being a fibroadenoma) and she commented ' oh! This is like hitting a brick wall!" - so I know they are very, very dense. I really did not know until reading this forum that dense breasts are a higher risk for becoming cancerous! I thought it was just that the mammogram detection was harder! Also I thought I read that recurrence rates with 75-100% density are like in the 20% range! (What???) And they also have a higher incidence of getting cancer in the opposite breast.

Tumor is in upper inner quadrant. (on my MRI it says lower inner quadrant. I don't see how that could be correct because the lump is definitely above my nipple, but my breasts are super deflated maybe there is a 'sag' factor. Anyway, I've read that the inner upper is harder to remove with good cosmetic outcomes. And there is more risk of inner mammary node involvement.

Of course I have to wait to see what the doctor says. But I'm fearful of making a mistake and just getting a lumpectomy and radiation when I may need to do something more aggressive because of my breast density and the PR situation…

Sorry this is so long. I've been on this site for a month reading as much as I can on all the above!! Thank you!

ctmbsikia

Oh sorry you're here. Good luck on Monday! Can't help you with the PR- but there are many sub types and as you know the pathology following your surgery will determine the treatment plan. Grade 1 and the low Ki67 is good news (for a shit disease).

I also think it's the lower inner quadrant that is a tough spot to have a tumor. Upper inner (mine too) is 11:00. I had a good cosmetic outcome with a 4cm tumor. That breast is smaller after radiation, and now I have fat necrosis, I do have contraction (dimple is showing!!) but I can deal with it.

twistygirl

Thank you so much for responding. My tumor is 'only' about 1 cm but my breast size is an A cup. When I lay down on my back, I can see the lump popping thru my skin. There's almost no tissue where it is. (It is at between 2-3 o'clock - on right breast. so 9-10 o'clock on left) When they do a lumpectomy, how much tissue is actually removed? I know 'margins' are as small as 2mm - but I can't really imagine how much will be taken out. Also, my right breast, where the tumor is, is already smaller than the left. So if I have a lumpectomy and radiation, will it end up being significantly smaller? Oddly so?

Moderators

Hi Twistygirl, and welcome to Breastcancer.org,

We're so very sorry to hear of your diagnosis, but we're really glad you've found us and decided to post. As you can already see, our Community is full of amazing members always willing to offer information, advice, encouragement, and support -- we're all here for you!

While you wait for more responses from our helpful members, you may find it helpful to check out the main Breastcancer.org site's pages on Your Diagnosis, to read about what hormone receptor status means, and how the other pieces of your pathology report (when you get it) will factor into your treatment plans.

We wish you good luck with your appointment on Monday -- please let us know how it goes and don't hesitate if we can do anything at all to help!

--The Mods

Salamandra

It's very hard at the beginning. I ended up buying a cemetery plot while I was waiting for my first appointment! I told myself no matter what I'd need it someday!

But it sounds like your cancer is likely very treatable.

I think that the nurse pathologist may have a higher standard for rare than we would. 15% means that it's probably something that she sees regularly, whereas she might think of rare as something that she's seen only once or twice in her whole career.

It is true that you won't really know about your pathology until after the surgery, and probably some time after that for them to run the oncotype. And that's basically the best case scenario. It felt like forever. For me it was about three months between finding the lump and getting the oncotype result that told me I wouldn't need chemo. The feeling of always being waiting was not easy. I took advantage of whatever psychological/psychiatric support I had. I only wish I'd asked for the ativan earlier.

Still, I will say that I felt *significantly* better after the first meeting with my surgeon (which was about three weeks after the biopsy and about a week and a half after I got the malignant results. That was a very long few weeks after the biopsy. I hope that you also will feel able to exhale again after meeting with the surgeon!

Try not to drive yourself crazy with statistics. Yes, overall it looks like PR negative may be somewhat less favorable than PR positive. But women with more favorable diagnoses than yours can still recur, while women with less favorable diagnoses than yours can still stay healthy.

I totally get why your brain is going to all the things that can increase your risk. One of the best things a friend did for me while I was waiting was to go over with me all the things I had in my corner. For me, that was things like access to excellent treatment, general health, caught early, etc.

Good luck with the appointment on Monday!!

Salamandra

I don't feel like I can see the difference in my breasts after the lumpectomy. I'm somewhat larger than you but also the doc took out a lot - she said the side of a golf ball I think.

If your doc thinks the location will be tricky for cosmetic outcomes, they can bring in a plastic surgeon to consult or even assist at the surgery. If your doc doesn't bring it up, you can ask, or get a second opinion yourself. Insurance will also cover cosmetic surgery/implants after a lumpectomy, not just a mastectomy.

I was concerned about the scar/shape from my lymph node biopsy. I felt like that messed up my silhouette more than the breast, and the scar was actually much worse. My surgeon suggested I give it a year to heal up and then re-visit. I did, and I was like 'eh'. I can still see the difference but it's a lot better now and it just doesn't bother like it did.

UpstateNYer

Hello Twistygirl,

I was diagnosed in Feb. 2019. I was ER positive and PR negative. I actually spoke to the pathologist regarding being PR negative and if that had to do with possibly rendering a poorer outcome. She assured me that there was not enough research to indicate that at all and that I should not be too concerned about that. My tumor was small but a grade 3 and I had a high onco score, so I did chemo too. I am doing well and feeling fine now. Best of luck to you. Hoping you get the answers you desire from your surgeon. Pat

twistygirl

thank you so much for responding! I will post an update on Monday. I will take a list of questions for the doctor bu I’m sure I will have more!

twistygirl

Met with surgeon today. Lumpectomy is recommended, so that's what I'm going with. Will have to wait on details about radiation after. I'll have outpatient surgery next Wednesday. She said PR negative was not a factor because I'm very strongly ER positive. She said the MRI was good. Nothing concerning. She said my dense breasts don't put me at a higher risk of recurrence. BUT we will be seeing each other every six months for the next 5 years for mammograms, ultrasounds and breast MRIs every other year.

I DO feel so much better now that I have a plan in place. Praying for no node involvement and clear margins! Thank you again to those who responded. What a nerve-wracking time, right? So very thankful for my God and my family and friends.

LivinLife

Hi twistygirl! Glad you're feeling better after meeting with the surgeon! Generally once one has a plan and more understanding of earlier results it helps quite a bit. Please let us know as you get more information after surgery. Best with surgery next Wednesday!

Salamandra

Yay! I'm so glad too that you had this first step in your treatment, and that the news was all good. I hope you have smooth sailing but yes, it is *such* a nerve-wracking time. Hang in there and keep us posted!!