Just diagnosed, 1st appts with BS and Onc tomorrow

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Allieben
Allieben Member Posts: 8
edited April 2018 in Just Diagnosed

Hi there everybody, I'm taking a deep breath and diving into the pool with all of you. I was diagnosed last week after breast biopsy. It is a 3cm lesion in my left breast, the Path report says DCIS but it also says invasive, Grade 3. It also says estrogen receptor low positive 2% and progesterone moderately positive 5%. So far no lymph involvement detected. I was feeling scared but semi-positive about it until this evening when I was reading that being only weakly hormone positive might be the same thing as being negative, which can be worse, so now I am back to being really scared. The Grade 3 scares me too. Meeting the breast surgeon then the oncologist tomorrow. I was naively thinking I'd just have a double mastectomy, no chemo/radiation and that would take care of it. (that's how it happened with a friend of mine and she is doing great now). I'm really terrified I'm going to get slammed with some way worse news than I was originally thinking. When and how is the Staging done, and who does it, BS or Oncologist?

Thank you for any and all help. I've been reading a lot on here and people seem so kind, and so knowledeable.



Comments

  • Icietla
    Icietla Member Posts: 1,265
    edited March 2018

    Welcome, Allieben. I am so sorry about your diagnosis and what you are going through. I know you have had a very bad shock and have a lot of fears. There will still be some anxious times ahead, wondering about results to come.

    Clinical Staging is a guesstimate. Pathologic Staging will be determined after your surgery. Your Oncologist will be able to tell you after your next Pathology Report has been issued.

    Grade 3 tends to respond well to Chemotherapy. Even if yours is treated much like Triple Negative type with Neoadjuvant or Adjuvant Chemotherapy, afterward you may also be offered continuing treatment with an anti-hormonal medicine because of your tumor's being hormone receptor positive. Your Oncologist will make considered recommendations for the best treatment for your case.

    Your Surgeon will generally describe the surgery options appropriate for your case. If you are already decided on a particular surgery type that is feasible for your case, then your surgery can be planned and scheduled.

    Because some of your tumor is known to be invasive, in connection with your treatment surgery, at least your sentinel lymph node/s from your axillary area on the side of the diseased breast will be collected for Pathology Lab examination. Ask (and remind) your Surgeon and the Hospital people to do whatever they properly can to make the pre-surgery tracer injection procedure tolerable for you.

    You will feel much better -- more in control -- when you have a treatment plan. For now, remind yourself that you are doing all you practicably can about it, and that your Health Care Providers are watching out for you and will take care of you. If you need something meanwhile to help you about anxiety or to get enough sleep, ask your Doctor for something to help you that way.

    Whatever it takes, you can do it!

  • Allieben
    Allieben Member Posts: 8
    edited March 2018

    Thank you so much for responding and for your reassuring words. That info is definitely helpful. Well, I'm off to my appointments now! Wish me luck!

  • Icietla
    Icietla Member Posts: 1,265
    edited March 2018

    Good luck, Allieben.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited March 2018

    Allieben:

    I hope your appt goes well. As mentioned here, this journey gets a little easier once you have a treatment plan in place.

    Ask any and all questions. Someone will step in and try to answer.

    {hugs}

  • moth
    moth Member Posts: 4,800
    edited March 2018

    Hi Allieben, just waving hi as I too have am only weakly receptor positive.
    We can chat more when you hear what your doctors have to say.

    hugs

  • Ingerp
    Ingerp Member Posts: 2,624
    edited March 2018

    Are you sure about the "invasive" part? My DCIS was also Grade 3 (I think many are) but I only had a lumpectomy and radiation. I decided not to have the sentinel lymph node removed. Are you meeting with a medical oncologist or a radiation oncologist? I did not have an MO last time around (although am adding one this time--oy!)

  • Allieben
    Allieben Member Posts: 8
    edited March 2018

    Wow. So had the appts with the BS and the MO today. As I feared, it's not quite as "good" as I first thought. It is Stage 2b but the plan is not just to go ahead and have surgery like I thought. Nope, I'll be starting chemo on Friday!!! . I can't believe I just said that. Shocking. 4 weeks of 2 drugs then another I think 8 weeks of 2 other ones, not sure but she said at least 4 months of chemo. Then surgery. Then possibly radiation or who knows.

    Oh, and Ingerp and Moth, hello and thank you for your responses.

    Ingerp, in answer to you question about It being invasive, yes I am sure (unfortunately). The other day I emailed a question about that to one of the nurse practioners since I saw that word on my path report and wanted to clarify what it meant, and if it really was both kinds (DCIS and invasive), here is her response which I though was very helpful:

    "Yes, infiltrating and invasive are the same thing. Invasive is definitely a scary word, but remember invasive means that this type of cancer cell has the ability to spread, but it doesn't mean that it definitely has spread. Our hope is that what we see on imaging reflects what is going on in your body, which is that your lymph nodes are not affected."

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2018

    Sorry you are facing this, but I highly engourage you to jump into the March chemo thread. My chemo gals...both times...were my lifelines and sanity savers. I have met many in person, run some half marathons with a few, and most of us STILL keep in touch regularly. In fact I know many from the March 2015 chemo group are headed to Mexico this weekend. There's nothing like being able to commiserate with those who "get it" because you're going through it at the same time.

  • Icietla
    Icietla Member Posts: 1,265
    edited March 2018

    Hi Allieben. Neoadjuvant Chemotherapy has some definite advantages. It can shrink a tumor to make lumpectomy a feasible surgery option; and its shrinkage of a tumor before surgery can help achieve clear mastectomy margins, too, in cases in which the tumor may be in close proximity to the chest wall or the skin. Another advantage is that there will shortly be indications of whether the Chemotherapy treatment is on the right track with apparently effective medicine/s.

    It is important that you and your household members all do your best not to catch any communicable diseases that may be going around -- such as respiratory illnesses. Chemo treatments are sometimes delayed (from *otherwise ideal* scheduling) because of sicknesses like that. Your Oncology Clinic will likely expect and require you and your accompanying support person to be apparently free of any such illnesses whenever you visit there. Further, it would be helpful to know (or at least have a high degree of confidence) whether any symptoms that may arise -- such as nausea, vomiting, diarrhea, etc. – are most likely side effects of your treatment and not just as likely to be from some communicable illness you have acquired, see. I strongly recommend that you discourage and avoid non-essential in-person visits. I strongly recommend also that you and your household members do your best to keep out of crowds and also that you get and wear protective clinical use masks and gloves whenever (any of) you must be around others, until you are all done with any and all Chemo treatments and follow-ups therefor. On the bright side, your wearing protective clinical masks and gloves in any public places will usually get you more "personal space" -- and that will help even more to reduce your risks of catching anything that might necessitate delay or interruption of your treatment plans.

    Pharmacy drive-thru pick-up windows are best for getting your medicines now. Other shopping is best done by mail order or in the supermarkets at like 2 a.m. on Tuesdays, provided, however, that those Tuesdays are not the first day/s of the month/s. You get the idea.

    Get psyched-up, not psyched-out.

    We are here for you.

    (((Hugs)))

  • Allieben
    Allieben Member Posts: 8
    edited March 2018

    Kbeee - thank you, good idea to join the March chemo, I think I will do that. And that's awesome that people become real life friends sometimes as well as thru the boards!

    Icietla - thank you so much for all the great tips and ideas and support. Yes, I was thinking about the immunosuppression, I am not sure how long I'll be able to work, I don't even know how I'll feel Monday after starting chemo Friday. My boss will be flexible, but I work in home health care so, yeah, I do have concerns about being exposed to who knows what. I guess my labs will indicate when I better stop. Of course, also depends on if i feel sick from side effects too. Kinda nervous about that part.

  • Ingerp
    Ingerp Member Posts: 2,624
    edited March 2018

    Allie—well poop. I can’t imagine how shocking it must have been to hear what you did. All I can say is there are *tons* of women here who’ve had great success with neoadjuvant chemo. And Friday—wow. Not much time to get your head or life in order. But maybe also not much time to freak out? Do join that March 2018 group. There is immense support/empathy from women going through what you are at the same time. It also might be comforting to check in with some of the older chemo threads. I always find it heartening to hear from women who are out the other side—there’s a great “You can do this!” vibe.

    And so you can. I’ll be thinking about you Friday. Let us know how it goes.

  • Allieben
    Allieben Member Posts: 8
    edited March 2018

    well, I had 1st chemo treatment last Friday. It wasn't too bad , the worst part was the IV. Its getting old being constantly told that im a hard stick. I am getting a port put in tomorrow. Ironically, have to get an IV for the port procedure. Hopefully that will be the last one though. Today I had an echocardiogram. I was not at all nervous since its just an ultrasound so noninvasive. But when I thought the tech was done he then informed me he had to inject contrast dye, so yep, needed an IV. He tried twice and couldn't get it, then called a nurse in who did get it. So the port will be a good thing! Then chemo again on Friday.

  • Jennifer522
    Jennifer522 Member Posts: 254
    edited March 2018

    I finished chemo for triple negative last week. I had 4 rounds of AC (every 2 weeks) and 6 rounds of Taxol (every 3 weeks). My MO would have stopped Taxol at 4 rounds if I was having bad side effects.

    The good news with negative is chemo usually works very well. My 3cm tumor is pretty much gone. I had MRI before my last chemo and my tumor could barely be found. Met minimal sub threshold measurement.

    I had my port placed the day after my first meeting with doctors, it made getting chemo so much easier. They are taking it out when I have surgery soon.

    Chemo has been manageable. I never threw up or really felt nauseous. Just tired. I nap quite a bit, so I have energy in the late afternoon/evening

  • Allieben
    Allieben Member Posts: 8
    edited April 2018

    Ingerp and Jennifer522, thank you for the words of encouragement. Sorry so slow to respond, I've been kind of overwhelmed and haven't been back to the website in a bit. But I do want to participate, I think it's a great thing. I should probably go check out the March chemo group too.

    Thanks again Ladies!

  • Ingerp
    Ingerp Member Posts: 2,624
    edited April 2018

    Allieben--thanks for checking in. Good to hear you're hanging in there. I finally had my initial consultation with an MO yesterday. Got a lot of good information but not quite everything I needed to hear before making a tx decision. She's going to do some research and get back to me. The waiting continues. . .

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