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I just had THE call

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pneuma
pneuma Member Posts: 18

I knew what my doctor was going to tell me. So I was not surprised when she basically confirmed the worst.

Cancer took my mom - ovarian. My sister is currently in treatment - fallopian. I ignored my breast lump for a year.

My husband made me go have it checked up. I was ordered to have a diagnostic ultrasound and mammogram.

The result - bi rads 5.

The radiologist recommended a biopsy.

I had it 5 days ago, they put markers. And today my Dr. called to confirm what I already expected.

Tomorrow I am going to see an oncologist. What do I ask her? My doctor said I most likely will have a surgery. I ask her what stage do I have. She said a surgery will determine the stage.

I am leaning on immunotherapy rather than surgery but what do I know?

Any suggestions is a big help. Thanks.

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  • kaynotrealname
    kaynotrealname Member Posts: 410
    edited May 20
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    I am so so sorry this is happening. We all know this is the absolutely worst time of it all. As far as what to ask I would want to know the following.

    1. What type of breast cancer do you have? There are four main types - hormone positive, hormone positive along with HER2 positive (called triple positive), hormone negative but HER2 positive, and triple negative (no hormone receptors). Hormone positive tumors without HER2 amplification do not have a proven immunotherapy as of yet.
    2. What grade is the tumor
    3. Does your ultrasound or mammogram at this time indicate whether lymph nodes are involved?
    4. How large is the estimated size of the tumor
    5. What is the order of treatment based on what they know so far? Surgery by the way is almost always a part of treatment unless your cancer has spread beyond the breast area.
    6. Are there any other scans you will be needing before treatment begins.
    7. Are you eligible for genetic testing and does your oncologist recommend you get it. I would think that's an easy yes considering your family history.

    Those are the questions off the top of my head. I wish you the best of luck tomorrow and if you have any questions don't hesitate to ask us.

  • pneuma
    pneuma Member Posts: 18
    edited May 21
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    Thank you.

    1. As of now I was only told I have cancer. I did ask my Dr. what stage I have, she said a surgery will let me know. I will see the oncologist tomorrow. Does my biopsy will show the type I have? I guess I should ask her that. Thanks.
    2. I was not told that. I would ask tomorrow.
    3. Yes. when I went for diagnostic ultrasound and mammo, the radiologist himself took more ultrasound on my armpit where they seen lymph nodes. And when I had my biopsy, they also put marker on it. And then they took mammogram of my breast and armpit to make sure the markers are seen on mammogram.
    4. The tumor is big it actually can be seen at plain sight. Probably quarter size .
    5. I would know tomorrow what the oncologist recommends. I am scared this would be my first ever surgery actually. How is it done? I mean, how long? the surgery and recovery.
    6. Actually the hospital called me when I want to do my breast MRI and when I told them I actually have an appointment with the oncologist tomorrow they say to do that first and see what she recommends.
    7. Tomorrow is my first time to see the onco. The Dr. who called me to say I have cancer is my PCP and she was the one who recommended me the onco that I will see tomorrow.

    Thanks so much for the reply and I will update what the onco tells me.

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    Anything you need to ask we'll help you the best we can. As far as surgery goes I ended up doing a double mastectomy. Honest opinion? It wasn't particularly bad. Pain was easily controlled, recovery wasn't awful either. And they were super nice to me in the hospital. I stayed one night.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952
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    I echo much of what everyone one else has said. I do think that once you have all the info necessary for an oncologist to formulate a treatment plan, then you can ask questions specific to your type of bc. Breast cancer is far more complex than I could ever have imagined and treatments can vary depending on many factors. I am not saying to not question your mo but it’s likely that they have a deeper understanding of your bc than you do. I also suggest recording the visit, with MO’s cons, as it’s sometimes overwhelming to absorb so much info at once. I found it helpful to play it back, bit by bit. Sort of like digesting something in small pieces. Take care

  • katg
    katg Member Posts: 217
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    Great comments by all. I had my left breast removed first and they also took 3 sentinel nodes. No cancer in those. Pain? Between the numbness of the breast and likely nerves removed with the nodes, I had little pain at all. We all are different, and possibly you will not need such a serious procedure. I do know they usually offer high milligram Tylenol or other pain pills with surgeries. You can ask before these questions.

    I also had my ovaries and fallopian tubes removed the same day. I had more pain across my middle for sure. I was in the hospital overnight to make sure i was stable. It depends on the hospital. I have met women who went home the same day. Please let us know how it goes.

  • moderators
    moderators Posts: 8,185
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    Dear @pneuma, we're sorry for your recent diagnosis, but wanted to send you a warm welcome to our community. As you can already see, you'll find support and encouragement here.

    To prepare for your next doctor's appointment, we suggest reading our article Understanding Your Pathology Report. This information will help you understand the characteristics of the breast cancer and will help you and your doctors choose the best treatments for you and your particular situation.

    We hope this helps, and please remember we're all here for you. Keep us updated on how your appointment with the oncologist goes.

    Best,

    The Mods

  • alicebastable
    alicebastable Member Posts: 1,945
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    I had a lumpectomy, and it didn't hurt at all. I went out to lunch with friends two days later. It's pretty standard for at least a sentinel node to be removed for pathology, along with the tumor. My SN had a surprise micromet (not seen on imaging), but all that meant was a longer course of radiation. If you have a lumpectomy, radiation is the standard follow-up. Some people have problems with it, but a lot of us don't. It's very quick each day, but the daily (weekdays) routine gets pretty tedious. I'm retired, but if I wasn't, I'd have probably worked through radiation since I had it very early in the morning and felt fine the whole time.

  • pneuma
    pneuma Member Posts: 18
    edited May 22
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    Thank you all for sharing your experiences. SO here is what my onco told me:

    I have a grade 2 and stage 2 BC. So far lymph nodes are clear. They only found cancer in the right breast. But when she checked my left breast, she said she can feel a lump. I told her when I had my diagnostic mammo/ultrasound. They did find several cysts there but told me it's benign. So I guess I will know when I have my breast MRI. That's what she wanted me to do first and foremost because she said that will finalize what stage I really have.

    Then she said once she knows what stage I have, she wants me to do chemo right away. She also wants me to have a genetic test. And that the decision to have lumpectomy or mastectomy depends on the MRI. She also said she wants to check if the lump inflamed the skin that will decide if I need a mastectomy.

    When she checked my breast she says it looks like it did not penetrate my skin. So I don't know, I guess the MRI result will be the deciding factor for the treatment plan.

    I want to ask. Is chemo a better option than radiation? I mean like literally pick your poison treatment right? I feel like is it really the solution to eradicate cancer? Poison our body? It seems unfair.

    PLEASE please more info and links regarding my so far - grade 2 and stage 2 BC.

    Oh I also am her2 positive. And according to my research it's invasive? Does it really have a lifespan of 5 years once diagnosed?

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    "Does it really have a lifespan of 5 years once diagnosed?"

    No. HER2+ positive breast cancer has a fantastic immunotherapy in fact that has totally changed the trajectory of the disease. And as far as chemo being poisonous, yes it is. But it is also poison for the cancer cells and as of right now it's one of the main things we use to defeat cancer.

  • moderators
    moderators Posts: 8,185
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    @pneuma, here are some links from our main site content that you might find useful:

    Stage II breast cancer

    Grade 2 breast cancer

    What is HER2-positive breast cancer?

    You can also utilize the search function to find the information most relevant to you. Besides this, here are some other topics and discussions that you might want to join also:

    Stage II Breast Cancer: Meet, share and support others with Stage II Breast Cancer

    HER2+ (Positive) Breast Cancer

    Hope this helps!

    The Mods

  • maggiehopley
    maggiehopley Member Posts: 116
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    Last July I completed active treatment for Stage 2, Her2 positive breast cancer. Mine was also ER/PR positive. According to Dana Farber (one of the top cancer hospitals), the 10 year survival rate for Her2 positive breast cancer is 99%! The odds are very, very good that you will be fine.

    That said, you will do chemotherapy with immunotherapy first, before surgery, followed by either immunotherapy or an antibody drug conjugate after. You may or may not do radiation. The treatment is a long process but you will get through it. I know you are scared now, but once treatment starts you will settle into a routine. They have medications to deal with side effects.

  • pneuma
    pneuma Member Posts: 18
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    OK. Thanks for the all the info guys. I just read my biopsy result. I have invasive carcinoma. No DCIS. They scheduled me for MRI tomorrow. The care nurse told me to drink plenty of water. Basically eat anything I want. Anything else to prep me for MRI tomorrow? She said it will take 30-45 mins.

    But I have to be there 1 hr before. She said they are going to put some liquid. She talks fast and I just woke up. What liquid is that? Probably like a dye?

    And thank you mod I will read up on all those links. I want to know everything about the cancer I have.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952
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    MRI’s are painless and non-invasive but they are loud. Most facilities offer ear plugs if needed. Yes, the injection is the contrast dye. No concerns about DCIS since if there are even a few DCIS cells floating around, whatever treatment you receive for IDC will take care of any stray DCIS (nothing can find or visualize every single cell). IDC will be the treatment focus as it is invasive. Take care

  • pneuma
    pneuma Member Posts: 18
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    Ok I will just type what my biopsy result shows:

    Final diagnosis:

    U/S guided core biopsy - right breast, 3:00. 3cm from nipple

    infiltrating ductal carcinoma grade 2, with focal lobular features

    U/S guided core biopsy, right axillary lymph node:

    reactive lymph node, no evidence of metastatic carcinoma

    estrogen receptor - positive

    progesterone receptor - negative

    Ok and what is Ki-67?

    it says 20% of positive nuclei

    Then I have an overload of calls for appointments:

    MRI - tomorrow

    Breast surgeon consultation - 5/29

    And this is the one that I find weird - genetic testing which I chose virtual. How can they determine or check for genetics through virtual? And if the camera does not work they said they can just call me?

    Comments on those results HIGHLY appreciated.

    Thanks so much.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952
    edited May 22
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    To answer one of your concerns… I met with a genetic counselor before they actually did the test. She explained to me what genetic testing could and could not reveal and what the implications of positive genetic mutations might be. She also reviewed my family medical history, which I submitted in advance. All of this could have been a virtual visit. I then went to the lab for blood draws. My follow up, when results were available, was also in person but could have been virtual. I am sure medical each medical facility handles this somewhat differently but my experience explains why a virtual visit would have worked. Take care

  • katg
    katg Member Posts: 217
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    I also had the genetic test offered to me at COH in Duarte, CA. They will have you fill out forms to agree to the test. A blood draw is done. My results from the genetic lab were reported to me by the genetics Dr. He explained it all virtually. There is a portal we use at the hospital which provided the virtual access. First though, the result was shared with my medical oncologist. I had BRCA2 and another variant. This changed the course of my treatment. What i will say, is many people have the genetic test and nothing is shown.

    I too have HER2+. I had chemo to shrink my tumor, surgery to remove it, then Perjeta, Herceptin infusions and Lynparza pills for one year. All in all, Covid, and a blood clot in between, so my treatment was finally done in 2 years. My 2nd year was nearly normal. Once chemo is done, your body starts recovering. I did not have radiation. The radiation oncologist doctor said having it would only increase my survival by 2 %. He said if I was family, he would not have me do it.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952
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    The vast majority, 80-85%, of patients undergoing genetic testing show no known genetic mutations. The testing is also far more extensive that just BRCA 1 & 2. I believe folks are tested for over 30 mutations .

  • pneuma
    pneuma Member Posts: 18
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    Thank you guys so much. My sister who is currently in treatment for fallopian cancer got her genetic testing. Can I just ask my sister what her result was? I mean I guess they still want to test my own blood? Just so I won't have to do those genetic test but what do I know? I mean one less in my checklist to do. I honestly am overwhelmed. With all these appointments.

  • katg
    katg Member Posts: 217
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    I had over 150 genes tested. My younger sister and older brother tested, and they carry the BRCA2 gene. That sister's daughter does too.

    pneuma- Ask your sister. It is good to know if she was clear. I will say in my family, my older sister chose not to be tested and she had ovarian cancer two years after my diagnosis. She was never tested. Still has not been.

    Honestly it is another vial of blood and forms to sign. Ask your sister if she was glad, she got the test. In the end, do what makes you feel right. It is your body.

  • cowgirl13
    cowgirl13 Member Posts: 778
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    Hi pneuma. I was where you are 15 years ago, almost to the day, I was triple positive and had a lumpectomy, chemo, radiation and a year of Herceptin. In my experience it was very doable. Be sure to continue posting with your questions - it helps so much. Let us know how your MRI goes. You can do this, girl!!!

  • kaynotrealname
    kaynotrealname Member Posts: 410
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    Pneuma, ask your sister what her result was. Also ask how many genes she tested for. If she was negative with a good panel, that's a helpful thing to know. For you personally, also know that you can test for as little or as much genes as you want. Personally I did not want to do a big panel but only the actionable genes associated with the cancers in my family. For my mental health I knew I didn't want to know about something I couldn't do anything about.

  • pneuma
    pneuma Member Posts: 18
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    Thanks so much for the info. I had my MRI done. My care nurse was very helpful in that she called me and told me to drink lots of water the day before the MRI. Then the lovely lady that did my MRI was really nice. She said she had breast cancer too and she also opted for mastectomy which was 10 yrs. ago.

    She also reminded me to drink lots of water because she didn't want the dye to be sitting in my kidneys. That kind of scared me so of course I did drink lots of water. I felt fine. So I believe the drinking lots of water advice was very helpful.

    I also got a handbook about breast cancer yesterday. It's a really thick book so I have a LOT info to absorb. My care nurse sent it to me. I did not ask for it. I guess it's part of their care process.

    About genetic testing I also will most likely will just do the actionable genes panel associated with the cancers in my family which as far as I know are ovarian and fallopian.

    I believe my sister tested positive for BRCA I just don't know what exactly. I will just do my own testing since I already scheduled it anyway.

    Guys this is my MAIN concern on my journey. PLEASE I need your answers. Did I made a good decision to do a biopsy? My original plan is non invasive method but my route went:

    Diagnostic mammo and ultrasound

    THEN

    biopsy with marker

    THEN

    MRI

    Is that a normal route. I agreed with biopsy because I watched on youtube that biopsy is when the doctors will know how to treat the cancer.

    It's just bugging me because the radiologist told me that only a biopsy can really tell if the lump is cancerous. And since I had birads 5 result it did say biopsy is almost always the next step.

    But then when I saw my onco she said the MRI will REALLY tell them the stage of cancer.

    So I am like…..?

    Sorry guys that just bothers me for some reason. ESPECIALLY the biopsy. Did I do the right steps in my cancer journey?

    Thanks guys. I hope I beat this.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952
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    MRI’s are imaging tools. They can visualize a tumor but can’t tell you anything about hormonal status, and more importantly, can’t tell you the grade, so an MRI is not the only component and not the final word. Additionally, if you are having surgery, stage and grade can change from what was estimated from the biopsy sample. It’s usually close to the biopsy estimate but the pathology report after surgery becomes the final word on staging.
    I can’t really speak to MRI first over biopsy, but why have to go through an MRI when the biopsy is actually what confirms you have bc? MRI’s are often done after bc is biopsy confirmed but before? Unfamiliar to me but I am not a doctor so perhaps you can ask why you’re getting an expensive test before bc is even confirmed. Take care

  • pneuma
    pneuma Member Posts: 18
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    I had my biopsy done before I went to my onco appointment. That's when she told me the result. But she said MRI will finalize the staging. I am now waiting for the MRI result.

    I most likely will know that on my 5/29 appointment with the breast surgeon.

    OK so it seems a biopsy with marker is a MUST for a proper diagnosis then. That's all I need and want to know.

    THANKS!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952
    edited May 26
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    pneuma,

    I am sorry if I added confusion to your story! I thought you were having an MRI before the biopsy. Mea culpa.

    Again, the MRI does not provide the final word on staging. It may help in an initial staging estimate but the pathology report after surgery is the bottom line.
    Did you make a good decision to have a biopsy? In my opinion, yes* . If not how would you know you had breast cancer? Imaging alone cannot diagnose breast cancer. If you didn’t have a biopsy, you wouldn’t know if you had breast cancer so how exactly would you have treated it non-invasively? What are your concerns regarding a biopsy and the biopsy marker? Again, without the biopsy, how would they have been able to arrive at a diagnosis (and tested for hormonal profile, critical to treatment decisions)?
    *In my 12+ years on bco, I have never heard of anyone being diagnosed without a biopsy. Imaging cannot see things on a cellular level.

  • pneuma
    pneuma Member Posts: 18
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    exbrnxgrl,

    No worries. It's because supposedly the cancer cells will spread more. Since they basically pierced the tumor. But what do I know? But then again yes, how will they know if they won't take a sample.

    It's just me being paranoid and over thinking, I suppose.

    I see if I understand correctly your case summary in your post. So yours started in your left breast? Mine it's in the right. What made you decide to do mastectomy on both?

    And it seems you opted for radiation therapy not chemo. Could you tell me why you opted for that route in your case? If you don't mind.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952
    edited May 28
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    Ah, I see. You are referring to something called seeding. While the theory exists, in reality there is little to no evidence to show that it actually happens. So in essence you are concerned about something that doesn’t really happen. Time to put that notion to rest.

    My situation is completely different from yours as I was stage IV de novo. Yes, I had rads, but to my bone met, not my chest area. Let me add that I was restaged just 6 weeks after surgery (which I likely would not have had if it was known then that I was metastatic) as the bone met was a complete surprise. I opted for a bmx because there were already calcifications on the right breast. I have never had any type of chemo. This is unusual but was appropriate for my particular situation.

    When looking at other people’s treatments, please understand that each stage of bc, hormonal profile, type (ductal, lobular, etc.) can and do have very different treatments. My course of treatment will not be what you will likely experience as you are not stage IV. Breast cancer sounds like a single disease but there are many types, sub-types, and individual variations. It is a hugely complex disease but when looking at treatment decisions, consider your specific circumstances, not that of a stage IV patient like me. Take care

  • pneuma
    pneuma Member Posts: 18
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    Can you please explain why a mastectomy is not a good decision for metastatic cancer? So if you have metastatic cancer you just leave the tumor inside? Will chemo/radiation even help? I just want some info about it.

    In my case:

    I have been searching for treatment that I want. I prefer not to have chemo and do a mastectomy on my right breast. And since I am her2 positive then I would take those AIs I guess.

    I have decided that's what the route I will go. That's what I will say to both the breast surgeon whom I will meet tomorrow. And my onco.

    I don't like the idea of poisoning my body. That is just what I thought of chemo/radiation treatment. But that's just me.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,952
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    pneuma,

    I am unclear about why you are concerned about metastatic bc. Stage IV is complex and it is not curable, so subjecting someone to unneeded surgery is not usually recommended, but treatments have greatly extended the lives of many. It is also unlikely that you would be metastatic at initial diagnosis (only about 6%).
    I am not HER2+ but please remember that this hormonal profile had poor outcomes before the discovery of Herceptin. Herceptin has been a game changer but it is given with a chemo regimen. I am no HER2 expert but from what I know, it would be a gamble not to go this route. TBH, AI’s alone will likely not be the best choice because they will do nothing with respect to your HER2 status. Have a look at some of the HER2+ threads and speak to some members to understand what a lifesaver Herceptin has been. I personally couldn’t imagine forgoing it if I were HER2+.

    We are all free to choose whatever treatment we wish, or none at all. No one likes the idea of “poisoning” their body, no one but… I have never seen any research/data that has shown that natural treatments work. Yes, there are stories, anecdotes, blogs, regimens, protocols, you name it , all claiming to cure cancer but none of this equals data. Did some people do all natural XYZ and never have a recurrence? Yes, but precious few and with results that could not consistently be replicated.

    Pneuma, please take some time to learn about bc from reliable sources, focusing on the particulars of your breast cancer. Learn about HER2+ treatments. Not treating HER2+ is more risk than the vast majority of patients are willing to take and AI’s will do nothing for that. There is a lot to learn and again, it is very complicated with many possible variations.

  • harley07
    harley07 Member Posts: 304
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    pneuma - exbrnxgrl has done an excellent job of explaining BC. Doctors prescribe treatment based on well researched protocols with proven outcomes. You may find the NCCN patient guidelines helpful in understanding those protocols based on your diagnosis. I’ll be surprised if the breast surgeon and oncologist allow you to dictate the treatment if it falls outside of the established guidelines as they are obligated to follow best practices and give you the most effective care. You can of course decline any treatment as it is your body. However, if you do please make sure you fully understand the risks.

    Wishing you the best.

    https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients