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Recently Diagnosed

Stillshocked
Stillshocked Member Posts: 11
edited September 2021 in Just Diagnosed

I was diagnosed a week ago. Appt with surgeon on Tuesday. Absolutely terrified!! I am HR and PR negative and the HER-2/Neu is Equivocal(whatever that means) The lump is in the high part of my arm pit. They are not definitive as to wether it started there or is a metastatic lesion. This is my first post and i am trying to not freak out here!

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Comments

  • moth
    moth Member Posts: 3,293

    Hi Stillshocked. I think it's ok to freak out. There's no right way to handle this.

    Just because it's in your armpit does not mean it's metastatic - it just might be a lymph node. Presence in lymph nodes is not the same as metastases. Also, breast tissue itself goes into the armpit so it might just be in the breast tissue itself.

    my advice is to try to stay off google (and even parts of these boards, honestly....). Ask questions here and try to keep breathing. Once you see your surgeon you'll have a better idea and hopefully even a plan and then it will feel better.

  • Stillshocked
    Stillshocked Member Posts: 11

    Thank you for the reply!! You are soo right about google! The dr that did the biopsy scared me when he said that it could have metastasized.

    I was worried about the HER2 being Equivocal. Does that mean it could possibly be negative (as a triple negative) since i am HR and PR negative too??

    My report says HER-2/NEU: Equivocal (2+, Approx 10 weak complete membrane staining)

  • moth
    moth Member Posts: 3,293

    Do your reports say anything about ER?

    You should have 3 pieces of info: ER (estrogen), PR (progesteron), and HER-2 (human epidermal growth factor receptor 2)

  • Stillshocked
    Stillshocked Member Posts: 11

    Yes


    ER Negative

    PR Negative

  • moth
    moth Member Posts: 3,293

    Your equivocal HER-2 means they will definitely re-test it and use a different method to determine if it's + or -
    At the first level, they're literally staining it and counting cells and comparing how 'dark' a stain is. It's a bit subjective.

    The tumor gets tested again after surgery and it can be different than the biopsy - they'll have bigger samples and also can use different techniques. Try not to worry about it yet - it's too easy to speculate and go down rabbit trails that don't necessarily apply to you.

  • Stillshocked
    Stillshocked Member Posts: 11

    I am hoping and praying that this is early stage. The measurement is 8 mm in greatest. So .8 cm

  • eastcoastts
    eastcoastts Member Posts: 352

    Stillshocked:

    I'm so sorry you are here and dealing with this during the holidays. Please know that you're in the worst part of this journey. When you have incomplete information, are learning what this all means (the terms, the doctors, ETC.) and you don't have a plan in place. It's just fear. I remember this well.

    I swear it gets better when you have more info and that plan. And more knowledge. Come here and ask everything you need to. Vent. We get it. Also, if you need medication to assist with sleep or anxiety, don't hesitate to ask your doctor for something.

    {hugs}

  • Stillshocked
    Stillshocked Member Posts: 11

    Thank you for the reply, It really is the scary part!! At least, so far. i don't know what i will be faced with yet. All i know is that i am ready to fight. I have a husband and two kids aged 20 and 17. The pathology report is so confusing and the term that i have looked up in my "cancer binder" given to me on Wednesday, don't look good. I am trying to put it out of my mind so that i can enjoy the new year with my family, but i would be lying if i said i was having a hard time with that! I keep thinking, is this the last New years i will ring in with them. i know that it totally absurd simply because i don't know anything yet!!!! I feel like an idiot for even thinking it, but it won't go away!!!

    I cut out sugar and processed foods because i heard they can make caner cells grow. I have been trying honey in my coffee, but i don't know if thats bad too?!?! I know I'm trying to control something that i can control, at least not right now.

    Sorry for the rambling i just want Tuesday to get here sooner than later!!!!!(thats my appt with the surgeon)

  • ToughCookie101
    ToughCookie101 Member Posts: 119

    Stillshocked, my tumor is in the same area as yours, the axillary tail. I am having surgery soon but my MRI indicates that is the one and only tumor, and it isn't a lymph node. Mine is a couple inches below my arm pit. The placement is rare but certainly possible. My tumor is estimated at double the size of yoursand my surgeon says very likely early stages. He keeps calling it small. I am 33. Hang on to the thought that it is small and was caught early. This is a stressful time.

  • moth
    moth Member Posts: 3,293

    Stillschocked - if you're looking for some guidance on what to eat, I found this site interesting & the author seems to be doing a good job adding evidence for their recommendations. Linking you directly to the sugar page: http://foodforbreastcancer.com/foods/sugar

    If you follow their recommendations it ends up being plant-based low-fat (pblf) - a diet which is very healthy imo. If you're looking for meal planning help, Forks Over Knives has a new year sale now & is all about pblf. There are lots of free recipes there too & also their documentary.

    I totally understand what you mean about grabbing on to the things WE can control. I read through that site, made up some meal plan lists right away to tweak what I was already doing.

    You might want to look at this study too. The single most important lifestyle modification which affects outcomes is EXCERCISE & it's huge. It can improve cancer mortality by 40%! http://www.cmaj.ca/content/189/7/E268.full?sid=0be...

    oh & if anyone is curious, soy is not only ok (even in hormone +) it actually appears to be helpful; so going plant based & consuming moderate soy is fine (ref to CMAJ study just above)

    here's to health & taking charge of what we can!

  • Sjacobs146
    Sjacobs146 Member Posts: 155

    My tumor was near my armpit as well, I was very lucky that it was caught by a routine mammogram. The good news is that the lumpectomy did not distort my breast as it might have in a different location. My kids were 19 and 15 when I was diagnosed. This is the toughest part of the journey, by this time next year, treatment will be behind you

  • Stillshocked
    Stillshocked Member Posts: 11

    Thank you so much for this. I am already reading it all:)

  • Stillshocked
    Stillshocked Member Posts: 11

    Thank you for th encouragement. I know that staying positive is key!! I just wish it were Tuesday already!

  • Jsan11
    Jsan11 Member Posts: 22

    First post...newly diagnosed. 12/11 Lump found in annual mammogram. 12/13 US of right breast and aux lymph. 12/18 core biopsy rt breast and aux lymph. 12/22 radiologist dr call confirming aux lymph was ok ... likely looked suspect on US bc I had a mole excision 3 days prior. Breast was positive for IDC high grade 1.3cm. Met with a surgeon on 12/27 believes caught early and most likely lumpectomy followed by radiation but also have option of mastectomy with recon. Had bilateral MRI on 12/28 and genetic test 12/29. Waiting on those results as well as hormone receptor results. Reconvene with surgeon on 1/4 to further discuss.

    To add to all of this? We had newly moved to Atlanta (June 2017). Still learning health care system here. Are treatments pretty standard for BC wether you go to one dr or 3? Likely to get same opinions and recommendations? Oh and in April 2017 had melanoma on rt arm .2cm so not deep enough to require any treatment other than surgical removal...completed.

    Am 45, hit menopause early... 2 years ago. Played with some HRT off and on but nothing consistent. Some biodentical compounded but only for about a month then this hit.

    So now what to expect? MDA offer anything different than what I would get here? Surgeon i saw is a chief at an area hospital and very humble in nature

  • moth
    moth Member Posts: 3,293

    HI Jsan - I have no advice about doctors or second opinions but just wanted to say hello. Sorry you're here. I think it's pretty quiet here the past few days & today especially. I'm sure you'll get more responses soon.

  • chronicpain
    chronicpain Member Posts: 217

    Jsan and Stillshocked: Sorry you are here and thinking about BC as the new year comes around, instead of out having an uneuivocally grand time. The rationale for New Years Eve parties supposedly started out as an idea that whatever you are doing at midnight will be how your next year will be, so people go party.

    When the clock struck 12, DH and I were alone at home talking about pros and cons of aromatase inhibitors and whether I should start them (was diagnosed a couple months back). So maybe that means we will be spending the year talking about BC instead of the trips we had been thinking of taking (:

  • Georgia1
    Georgia1 Member Posts: 188

    Hi there Jsan and thanks for posting. To answer your questions, NCCN and other medical organizations do have standard treatment protocols which all physicians follow. Atlanta has wonderful hospitals so I expect the treatment you get locally will be just as good as MDAnderson.

    I had a .7 cm mixed IDC/ILC tumor and we are essentially on the same plan; I chose lumpectomy followed by radiation and after a couple of tense and logistically difficult months I now feel pretty much back to normal. (I'm 59 and post-menopausal.) If you are at all unsure on your doctor you can get a second opinion at another facility. I did that for both surgery and radiation and it made me feel better to have two discussions tho the recommendations were the same.

    Best of luck to you and do feel free to ask additional questions as you go along. The Lumpectomy Lounge and January 2018 Radiation threads may be helpful to you.

  • Jsan11
    Jsan11 Member Posts: 22

    Moth - Thank you for reaching out, so glad I found the site and forums.

    Chronicpain - I've been surprisingly calm over the last few days.....as long as I keep my mind busy. I trust that your recent surgery and treatment has gone well.

    Georgia1 - Thank you for the response. I feel confident this surgeon is good, I guess once we know more about the test results I'll better determine if I feel the need for a second opinion or not. With your treatment, you mention the difficult months, was this due to the lumpectomy recovery itself or the radiation treatments? I am more fearful of treatments and their long term effects than I am a surgical procedure. My husband usually travels on the week days, so family is offering to come and help, but my husband very much wants to be here for me so we are trying to figure out what recovery might look like......at this point assuming chemo isn't needed. On a side note.....I was just starting to get a good handle on the hot flashes and fatigue with my biodentical hormone cream and now with this, I stopped it as soon as I was told I needed the core biopsy. Would rather deal with those side effects though than cancer. I hope that your treatment and recovery continues to go well for you and thank you for pointing me to the other threads as well.

  • Silbar
    Silbar Member Posts: 8

    Jsan~~What part of Georgia are you living in? Georgia has some great cancer treatment facilities....Winship at Emory , MDA at Piedmont Atlanta (https://www.piedmont.org/cancer/national-expertise/cancer-md-anderson-affiliation) and Northeast Georgia Medical Centers all have quality cancer care. The important thing is that you have confidence in your doctors and care givers. Your diagnosis results and plan of care might help dictate where you go... ex: frequent treatments such as radiation and chemo might do best by choosing a place  close to home. Good luck and keep us posted.

    Stillshocked~ Good luck on Tuesday. Keep us posted. 

  • Georgia1
    Georgia1 Member Posts: 188

    Jsan, you're right that a lumpectomy is a fairly easy procedure. I had pain for two days, then it was just the usual post-surgery inability to shower and wash my hair that was a drag - but for me the stress of constant doctors appointments both before and after surgery was the worst part since I work full-time. I was definitely dreading radiation, and researched all kinds of options like IORT and partial-breast radiation to try to avoid the side effects. But in the end I was fine with the short course of three weeks, and managed the side effects quite well. Again it was the daily grind of work then the sprint to the hospital for treatment that got me down more than the medical treatment itself.

    My husband was most helpful the four days after surgery, and then at the end of radiation when I started getting fatigued. I am in such admiration of the women who do masectomy; lumpectomy recovery was a breeze compared to that.

    Stillshocked, it does seem like your BC was caught early and the mass is small, although I know that feels like cold comfort. We wish you all the best and please keep us posted + feel free to vent. The women on these discussion boards are amazing. (Or as my niece would say, "amaze-balls!")


  • Jsan11
    Jsan11 Member Posts: 22

    Silbar - I am in Alpharetta north suburb of Atlanta. The closes hospital system to me is Northside although distance to Emory and Piedmont are only about 20 min. in decent traffic. Will have the second meeting with this surgeon on Thursday and get a better feel for the level of confidence.

    Georgia1 - Thank you for sharing your experience. I am able to work remotely from home so will have more flexibility with my schedule than others. It is reassuring to hear the lumpectomy and radiation are a tolerable process. I read some blogs where people had documented their double mastectomy and recon process and indeed it was extensive but if faced with it then will forge forward.

    Ultimately I'll feel better once we have the MRI results and Hormone Receptor results this week. The Genetics testing results are expected to take two weeks.

    Happy Holidays to all and stay warm! It's much colder in GA than it's supposed to be!

  • Fab65
    Fab65 Member Posts: 6

    jsan

    I am in Ga too, about 20 minutes north of you. I am seeing a breast surgeon in Alpharetta area, and having a core biopsy Wednesday in her Atlanta office. This surgeon seems very kind, but if the biopsy shows anything I will get another opinion prior to treatment. I am praying for negative results, but am already scanning the local area for breast cancer specialists to get a second opinion if needed. If you locate a good one please post or private message me. I would really appreciate it! We haven’t been in the area too long either, so not too familiar with area docs. I wish you all the best and pray all goes well for you :0)


  • Jsan11
    Jsan11 Member Posts: 22

    Fab65 - I just sent you a direct message as I wasn't sure if it's appropriate to post names of Drs. on the boards or not.

  • Fab65
    Fab65 Member Posts: 6

    Thank you for responding ☺️

    I just replied

  • Belle86
    Belle86 Member Posts: 2

    How did it go for you today? X

  • Stillshocked
    Stillshocked Member Posts: 11

    I just got home from the appt. Basically, no real new news. Waiting for the FISH test to come back. If it shows positive then they are going to start targeted therapy, 4 months of chemo, then surgery. If it comes back negative, then i would be a triple negative with 12 months of chemo before surgery. MRI scheduled for tomorrow to see if it is anywhere else in my body. They are very confused by the whole case. Said it was going to the "Tumor board" tomorrow morning so that several different doctors can look at the info and try to come up with a game plan. I'm hoping for a HER-2 positive result!!

  • Silbar
    Silbar Member Posts: 8

    StillShocked~~ I hope your test comes back HER-2 positive, although I wish it was all B9 for you. ((HUGS))

    Jsan~~ I have been told that Northside has a great cancer center. In ATL you have many great choices and I am sure you will find one that you feel comfortable with. I live in the Gwinnett area and  am being seen through the Gwinnett Medical Breast Care and Surgery Center. So far I am happy with them. Time will tell as I am still waiting for the excisional bx to be done.

  • Stillshocked
    Stillshocked Member Posts: 11

    Thank you Silbar! Hugs right back!!!!

  • msphil
    msphil Member Posts: 185

    hello sweetie hang in there things will calm down some once treatment plan in effect. i was diagnosed at 42 while making wedding plans for our 2nd marriages when I found lump. Hope is what got me thru this trying time I'm now this yr 2018 go in on 24 yr Survivor. Praise God. msphi idc stage2 sore under my arm found lump in shower 0\3nodes Lmast 3 mo chemo before and after surgery got married then 7wks rads then 5yrs on Tamoxifen

  • Jsan11
    Jsan11 Member Posts: 22

    silbar - I'm glad to hear that people are saying great things about Northside's program, that is reassuring :) Praying for good results on your bx.

    msphil - Thank you for sharing your diagnosis and story on this board. Having just read that you are a 24 year survivor is incredibly calming and comforting at this stage in the game for me and I'm sure the others on this board as well