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  • sarahnh
    sarahnh Member Posts: 105
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    None of that should be happening. I had a similar experience (given another patient's test results, etc) at my local hospital, and that was part of the reason I chose to get treatment at a better hospital further way. My treating hospitals have been fine with no major mistakes (sometimes minimal scheduling stuff but nothing like what you're talking about). Despite the cost in time and money, it really might be worth getting a second opinion at an NCI cancer center, and transfer your care if you feel more comfortable there.

    Was your tumor hormone receptor positive (ie ER+ or PR+)? I think that usually determines whether you get endocrine treatment.

  • cbnimh
    cbnimh Member Posts: 40
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    @sarahnh

    Thank you for your response. I'm "triple positive" but haven't been given the scores and onco-type information I have seen mentioned in the forums (I have asked and checked the patient portal which gives me little to go on beyond CBC results and upcoming appointments). It's painfully difficult to get information (that's accurate as well) from my doctors. They've been featured in the local magazine as "top docs" as the little plaques all over their offices announce. It's not very encouraging. Other groups I've looked into do not take my insurance.

    The best I've been able to piece together:

    IDC (initially 3cm, 1.3cm at surgery after TCHP chemo) Stage IIa, Grade 3

    HER+/ER+/PR+

    No lymph nodes involved (7 removed)

    No cancer in margins of tumor removed





  • harley07
    harley07 Member Posts: 288
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    I’m so sorry you are going through this. Inaccuracy and incompetence are not acceptable. My opinion is that accolades and high rankings do not necessarily translate to good patient care and are often times the result of marketing and paid endorsements, especially if they are featured in media such as magazines. I hope you get answers and / or can find better providers.

  • maggie15
    maggie15 Member Posts: 929
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    Cbnimh, Since you are triple positive you also qualify for hormonal therapy as well as herceptin. It's more treatment but it is an additional way of trying to prevent recurrence. Since you are HER2+ you are not eligible for the Oncotype DX.

    If there is any other facility in your insurance network, seek out a second opinion to evaluate whether they are more responsive and organized. If you are stuck with your current hospital look into their patient advocacy/patient relations office. While they probably wouldn't do much about a doctor's arrogant attitude they would Investigate lost test results and a big communication breakdown. After an emergency surgery I was discharged from a hospital I had been transferred to with inaccurate notes and another woman's medical history. When I pointed out to the patient advocate that my insurance would not pay for two ER charges, a two hour ambulance ride and complex anesthesia based on a resident's boilerplate notes that described a planned procedure she made sure that other notes were substituted in my summary. She also had to report the HIPAA violation.

    I hope things work out better for you going forward.


  • melbo
    melbo Member Posts: 266
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    with HER2+ you are also looking at several more months of H&P infusions every three weeks until you reach a year. And since the herceptin is the threat to you heart, there will still be more echocardiograms as well.

    I wasn’t ER+ or PR+, but based on everything I’ve read here you will also be given hormone suppression of some time. I have no advice for the bad experience with the hospital/system though. I’m sorry you are going through all of that on top of the stress of cancer and I hope it gets better soon

  • quietgirl
    quietgirl Member Posts: 165
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    in terms of ongoing meds. What you take and how long you take it becomes a conversation and decision between you and an oncologist who I realize is missing in action at the moment. And it is the standard procedure if you are ER+orPR+ since your cancer is believed to use estrogen or progesterone to grow, the blocking or elimination of estrogen makes it less likely for more growth. And that of course becomes part of the overall problem with taking a medication that blocks or eliminates can impact anything in your body that if effected by low estrogen (not saying this to talk you out of taking a med but because each of us react differently and so many people use the term side effects for things that are a direct result of the drug working the way it’s suppose to the “side effects” in many cases are the results of low estrogen which while it occurs naturally as we age is put into warp mode).

    Trying not to be long winded about but again you will find some people who have manageable issues, others who have bigger issues but choose to continue because for them the benefits outweigh the risks in their life and others who choose not to start or who end their meds before the original plan because for them the risk/benefits do not outweigh the impact on their quality of life. It is definitely not a one size fits all even if some doctors make it out to be such.

    Depending on your age and situation there are different protocols out there and hoping that your MO gives you some actual choices rather than just throwing 10 years of T at you without any explanation (but again whether you actually decide to take anything is up to you Someone can say taking a med will reduce your risk of reoccurrence by 50% and that might sound huge but someone who has a 20% risk and someone who has a 5% risk is faced with a different decision)


  • cbnimh
    cbnimh Member Posts: 40
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    @harley07

    I question what they are "top" at and how those accolades were acquired. I found these doctors through word of mouth from the ladies at church. I honestly didn't know the first thing about where to go, so I went with that. I tried calling several other places, but my insurance wasn't accepted, and many of the other cancer treatment options in my area were "out of network." After the radiation is finished, I will start shopping around, I think. The lack of communication has been awful.

    Add to that, at least one of the doctors (my main doctor) doesn't seem to give a care about keeping scheduled appointments. I sat for hours in the waiting room after arriving early for a scheduled appointment and then had my treatment stretch longer in the day. I can't tell you how much chaos that throws into a schedule when one is trying to work and has the logistics of several children's transportation needs and grad school to juggle. (Ultimately, this was a factor in losing employment, recently. So, I suppose one positive is that I don't have to worry about one of those things anymore.)

    Anyway, thank you for your response.

  • cbnimh
    cbnimh Member Posts: 40
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    maggie15

    Thank you for your reply and for the reminder about the Oncotype situation. I'm sorry; I forgot that someone in the survivor community had mentioned that to me previously. I knew that I was looking at Herceptin treatments throughout 2023, but the impression I got from my doctor was that after that, I would essentially be "cured" and free to go. Having a decade of pill-taking with the potential disruption to quality of life that implies by the radiation oncologist was a gut punch. It makes sense, given what I've seen in other individuals' stories and with the fact that estrogen is involved in growing my variety of cancer. Still, I suppose I was hoping there was some contraindication allowing me to dodge it. Maybe this is magical thinking on my part, but as it was presented to me as "TCHP, surgery, year of Herceptin and cured," I still blame poor communication.

    I'm sorry you had that experience with the surgery/hospital. That's frightening and dangerous. I'm curious about boilerplate notes. In my situation, my patient portal contains nothing but that. I had been reading the notes to try to understand the content of my appointments better. After the surgery, I noticed it said I had positive margins, and a mastectomy was recommended. When I asked my main oncologist, he said it was all "boilerplate," and he "didn't even know what goes into those notes sometimes," but he had the pathology report, and the margins were clear. In my mind, perhaps boilerplate notes should remain the territory of copywriters and not doctors. In my case, the cancer group I'm working with has me bouncing between two local hospitals for tests/treatment/surgery. I was unnerved about having surgery at the hospital attached to the surgeon as it was made infamous by some incidents there that included dropping babies and accidentally cutting their toes off. I just prayed they had 1) addressed their issues 2) those issues had been limited to one portion of their services and not a system-wide problem.


  • cbnimh
    cbnimh Member Posts: 40
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    @melbo

    Thank you for your response. To be clear, I was aware of the year's worth of Herceptin and the danger to my heart. If I understand it correctly, it can lead to the development of congestive heart failure. This is part of why I am so upset. I have gotten several echocardiograms, but no one has reviewed the most recent results (September-November). The only echocardiogram my doctor's office claims to have was done BEFORE the TCHP even started.

    I am deeply concerned that no one is monitoring my heart health at this point. I filled out the paperwork to request the records from the hospital that performed the echocardiograms and walk those records over to my main oncologist's office. I will do all of these things *in person* in the hopes that no one loses anything again. I'm considering finding a cardiologist or someone else to check things out because my faith in these people has eroded substantially since July.

    They keep sending me for echocardiograms they never receive, then have the audacity to claim I must not have attended those appointments. As though I hallucinated the whole experience? My Google timeline and calendar entries, and bills to my insurance say otherwise.

  • cbnimh
    cbnimh Member Posts: 40
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    @quietgirl Thank you for your response. Don't worry about being long-winded; if you can't tell, I've got quite a lot of wind. I just don't usually expel it with such force and at such high volumes on forums. That is unless I've arrived at a point where I'm beyond the beyonds.

    Winking

    The information about the hormone therapy aspect was thrown at me by the radiation oncologist, not my main oncologist - the same guy who thought it was appropriate to speak like the Micro-Machines Guy from those old commercials throughout our first appointment and gave me worrying genetic test results meant for another patient. (Great first impression, sir.)

    I've been reading about Tamoxifen, particularly, and noting some of the "side effects." I have a friend who took it for years after having a DCIS tumor removed. I recall she went through hell on the stuff. I'm very concerned about "brain fog" as I'm coming to the end of a degree and need every ounce of brain power I can muster to get a job that will make the last couple of years worth of work worth it. I need options and I need to know what my risk profile is. As you say, if there's a low chance of reoccurrence, I will opt for the quality of life and roll the dice, personally. Right now, I feel like my doctors are giving me the mushroom treatment (kept in the dark and fed on...) and taking a very cookie-cutter approach to my care overall.

    I also don't want to take a drug that may increase my risk of uterine cancer if my chance of reoccurring breast cancer is relatively low. Maybe I'm wrong, but isn't uterine cancer harder to detect and treat? The number of unknown unknowns is frustrating and not feeling like I have a team that even views me as human rather than patient #12345 is upsetting. Especially since I feel this whole thing could have been caught and dealt with sooner if my primary care hadn't recommended I skip a mammogram in the first place (I still need a new primary care) and the OBGYN who ultimately helped me catch this mess is no longer an option because she's dropped my insurance.

  • sarahnh
    sarahnh Member Posts: 105
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    Hi cbnimh -

    I really think you should get a second opinion from a breast oncologist (not just a general oncologist) at an NCI-designated cancer center. If out-of-network, your insurance might still reimburse charges. Here is why I think this is important:

    You say you had an ER+/PR+/HER2+ cancer, with residual tumor in the breast after neoadjuvant TCHP. I think there are two important things your oncologist should probably have discussed with you or at least mentioned:

    1. Endocrine treatment (because the cancer was hormone positive)

    2. Kadcyla instead of Herceptin (because there was residual cancer after chemo)

    There may be reasons for omitting these treatments. For example: Was your ER/PR only very weakly positive? Was the residual breast tumor really truly invasive cancer, or just in-situ (DCIS), or even just leftover fibrotic tissue without any live cancer at all?

    It's hard to know whether you are being treated correctly, since your doctors didn't give you information about your ER/PR percentages or surgical pathology.

    With all the screw-ups and lack of information, I think it's important for you to make sure you are being treated appropriately. You will have to take control and oversee this yourself. That's the way the world works, unfortunately.

    HER2 breast cancer is serious. It has a very high risk of recurrence, unless treated appropriately. I hope you will do whatever you can to ensure you are getting good care!




  • cbnimh
    cbnimh Member Posts: 40
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    sarahnh

    The best I've gotten out of my oncologist is to say that I was "very positive" (no numbers associated with that or detailed information, and as established before, the "notes" are "boilerplate" so he "doesn't know what's in them" and may not be accurate in the patient portal). He might be considering the Kadcyla because he said, "since there was still some tumor left after surgery, I'll be putting you on what I like to call 'super Herceptin." It's honestly @#$@#$# insulting not to be given actual names of drugs I'm being placed on and information about those drugs. They did an info session before the TCHP started, but there's been sod all since then. I'm not a 5-year-old; give me the @#$#@$ actual names and pamphlets or SOMETHING to look at so I know what is being pumped into my body. "Super Herceptin" is just offensively dumbed down as is "very positive." What on earth does "very positive" even mean? How can I understand or evaluate my care with "very positive" and "super Herceptin"? I utterly hate this entire practice. I plan to get through the radiation portion, at least the beginning, and get a second opinion lined up, at minimum. It's no wonder the practice has signs up everywhere telling patients that violence won't be tolerated. Initially, I thought it was terrible people would misbehave in a doctor's office. Now, I can see how people can be driven over an edge enough to want to hurl something, even if only invectives, at their worthless, condescending "cancer team."

  • elainetherese
    elainetherese Member Posts: 1,627
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    Do you have access to your reports through an online hospital/cancer clinic portal? My reports are all available on my portal. It includes all the original testing done on my breast cancer, PET scan results, CT scan results, heart scan results, etc., etc. You should know the hormone status of your original tumor.

    Herceptin wasn't the end for me. 95% of my cancer cells tested positive for estrogen receptors. So, yes, here I am, 8 years+ after my original diagnosis, still doing hormonal therapy. And, I'm seeing my oncologist next Wednesday!

  • sarahnh
    sarahnh Member Posts: 105
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    cbnimh Aha, thanks, that is reassuring to know. It sounds like the main problem is communication -- the patient gateway doesn't work very well, and doctors aren't always the best communicators. Have you thought about asking for written copies? For example, ask for printouts of your test results, and have the oncologist write down your diagnosis, the name of your medications, etc. Hang in there and don't give up!

  • cbnimh
    cbnimh Member Posts: 40
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    sarahnh

    I was able to find the actual pathology results, finally. I'm looking at the resources to help me read the thing. The ER and PR pathology scores are 95% and 80%, respectively. The HER2+ is +2, FISH ~7. I'm a bit confused because my diagnosis says IDC, but the pathology report identifies a DCIS "of no special type". I'll have to look into this more later today.

    The echocardiograms, along with the genetic testing results, are still lost somewhere in the ether. Yes, I think I will need to ask for physical copies of the information. I'm not sure how successful I will be because it often feels like my questions or requests barely register with this doctor.

    This is strange because so many people who have provided reviews for him gush about his willingness to take time and explain to people. It's worth noting that people seem to either gush or have a similar experience to my own, which makes me wonder if the guy doesn't like me for some reason. I have no idea why that might be because I didn't start out disliking any of them and never disrespected any of these people even after sitting in the waiting room for hours; I never complained or even remarked on it. My husband did, but I didn't. The good reviews are also several years old. It could also be that, like many people over this pandemic, these providers have changed, and not for the better. Who knows? It certainly seems like there's no way to have clear answers without constantly checking behind and demanding them, and evaluating them as an individual (someone who knows next to nothing about any of it despite trying to read up on all of it in what spare time I can find).

    It is interesting to note that the medical assistant never responds to messages via the portal except by phone call. I get the impression they have a policy to avoid providing information in writing unless pressed. It may be down to just awful communication and arrogant personalities, but I'm still leaning toward a second opinion when the bulk of this first radiation treatment is finished.

  • maggie15
    maggie15 Member Posts: 929
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    Hi cbnimh, If the diagnosis is IDC and the pathology report mentions DCIS it means that there was DCIS mixed with the IDC. Since IDC is invasive they don't actually worry about the DCIS (noninvasive) when it comes to tumor classification and treatment.

    The written messages via the portal are part of your legal medical record. An NP at my PCP's office told me she phoned people rather than replying via the portal so that what she said wouldn't be part of the record. It looks like they are trying to avoid responsibility for what they tell us.

    As of 4/5/21 there is a federal law that requires medical test results be reported directly to patients as soon as they are finalized so the echocardiograms and genetic testing should be in the test results section of your portal. If they are not there you can show up at the hospital in person and mention this to whomever should be able to access them. You might get the department which did the echocardiograms to give you copies of the results. My initial diagnosis preceded this date by a couple of months. I found out that my mammogram was suspicious when the imaging department phoned three weeks later asking why I hadn't scheduled a biopsy yet and that my biopsy was malignant when an appointment with a general surgeon popped up in my patient portal. I went to the hospital (rural, small and a D safety rating) in person to get copies of both reports. Needless to say, I travel 100 miles to a reputable cancer center for treatment.

  • cbnimh
    cbnimh Member Posts: 40
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    @maggie15

    I have another appointment tomorrow -- for the simulation, I believe. I'll go by the hospital with the form I filled out and try to retrieve my echocardiogram results then. It's just really strange that I've gone in but each time the system shows my appointment was cancelled and I never had it. It's very odd. I've had 2 since the one in the summer before the TCHP.

    I'll just walk it into my main oncologist's office when I get it and hope for the best.

    As for making everything a phone call, yes, I'm sure it's a legal dodge...which is what makes me angry, to be honest. If they're worried what they say could be judged harshly in a court of law, why?

    I'm sorry you've had trouble, too, and have to drive so far for reasonable care. It shouldn't be this hard or slip-shod. It's understandable that people are human and make mistakes, but it just doesn't seem like a few one-off "oops" moments. It feels like a system in tatters, barely managing to accomplish routine business.

    I sincerely hope everything gets better.