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To Be or Not To Be - Challenging the Standard of Care

wondering44
wondering44 Member Posts: 247
edited June 2022 in Advocacy

I started my "journey" a little less than a year ago. Through my "ordeal'" as another woman graciously posted on the boards, I have found that breast cancer patients tend to get dismissed in their so-called "journeys" for scanning or a diagnosis. I, too, am not a fan of the word "journey" in my cancer dx. I'd say my "journey" was more like PTSD or a lot of FEAR for some time afterward. I didn't know advocating for my care was necessary or required for cancer. What I found out was I had to learn to advocate for myself. I had to learn to keep searching for that "second or third opinion" until I was informed and accepting of the treatment path. I understand that my luck may run out at any time, and I could get another cancer dx. However, I move forward daily with the peace of mind that I have the right doctors to address it if needed. Once I found the right doctors, my PTSD and FEAR washed away.

So, as I looked back at my "ordeal," I pondered what I would do with it other than embrace my newfound peace of mind. So, I decided to CHALLENGE the standard of care. While it takes a lot of time, education, documenting, and patience, I decided to challenge it in hopes of changing it for another woman who walks that so-called "journey" after me. Today I am waiting for the Medical Panel's decisions which can take a LONG time. After the findings, I move forward with the next step of the process. May my new FIGHT change just one woman's standard of care moving forward. YOU ARE WORTH IT.

I believe every woman is worth the fight, and we all deserve the best care. XOXO to all the women who fight daily and to all those who fought and passed.

Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,636

    What an interesting post! It is very general so I am not quite sure about the challenge you are referencing. Can you elaborate as I am not certain about what you are referring to specifically. Th

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,636

    What an interesting post! It is very general so I am not quite sure about the challenge you are referencing. Can you elaborate as I am not certain about what you are referring to specifically.

  • lw422
    lw422 Member Posts: 1,373

    I don't understand the OP, either...?? I accepted the MD Anderson Standard of Care for IBC because they know a lot more about treating cancer than I do. I am grateful to my doctors and the state-of-the-art facility and staff who helped me through the ordeal of treatment. I know that many patients do not have access to excellent care and that is truly unfortunate.

  • norcals
    norcals Member Posts: 206

    Wondering44,

    I don’t know if this is on point, but I believe that the standard of care needs to be challenged if it doesn’t fit an individual’s situation. When I was diagnosed in 2019, I would have been stage 4, but if I had been diagnosed a year earlier, I would have been late stage 3. I was told that palliative care was the standard of care for my staging. I had a lot of disagreement with MO and luckily my BS and tumor board agreed with me and we moved forward with curative intent. Due to the “standard of care” set at the time of my diagnosis, the tumor board decided not to “stage” me and moved forward with aggressive chemo. A year and a half later, I met with a TNBC specialist and she believed that the tumor board made the right decision based on my age, physical health, etc. and that the standard of care at that time for stage 4 was not right for me. I am 3 years from diagnosis without a recurrence. I know that I may have a recurrence and the risk is still high, but I am grateful for the extra time I received because I was treated with curative intent. I believe “standard of care” is a floor not a ceiling

  • wondering44
    wondering44 Member Posts: 247

    exbrnxgrl - I was discouraged by the standard of care at my local facilities, and it left a lot of concern that I could not easily dismiss to find peace of mind. Last month I talked to a woman at our local facility who told me how poorly she's treated and how small she felt by her treatment at a local facility. She said she didn't know of any other options available to her. This woman passed by me after her appointment and let her story out while I was sitting in a chair waiting for an appointment. I had never met her. I tried to put myself in her shoes to understand how much she has been through to tell her story to a total stranger. It infuriates me to hear a woman talk about getting a less than adequate standard of care or read a woman's story who should have received treatment before a later stage diagnosis. Yes, not all scans pick stuff up immediately, but not all medical professionals do what is best for the patient to prevent some misses. We deserve the best care regardless of area, insurance, race, or means. That is what I challenge. A couple of months ago, I asked a friend how to change the standard of care. He said it isn't possible to change it. He said it is easier to get a monetary settlement from a facility rather than trying to change a standard of care even though it is in the best interest of patients. I don't accept that answer. I asked a physician on the Leadership Team at the local Cancer Center what standard of care patients should expect to get at the facility. He said he didn't know what the standard of care was for patients. Aren't we worth more than that?

    lw422 - Some facilities provide an outstanding standard of care to their patients. MD Anderson is one of those facilities. I switched to MD Anderson and have peace of mind moving forward. That place is truly remarkable and was a Godsend for me. Unfortunately, not all patients have the option to pick up and travel to receive the BEST standard of care at a state-of-the-art facility like MD Anderson. The standard of care I challenge is the one that robs women of body parts, mental well-being, time, and life. It is not acceptable for women to lose so much because the standard of care at some facilities accepts that it is the norm not to provide a better standard of care to women.

    norcals - You are on point.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,636

    norcals, I loved your comment about standard of care being the floor not the ceiling.

    Wondering44, yes we all deserve much better in many cases. With our disjointed health care system, I have no idea how this would be achieved. It really is shameful. My whole bc experience has been unusual from how my mbc was discovered to my treatments.I presented outside the box and feel fortunate that my mo and second opinion mo concurred on tx options. I’m almost at the 11 year mark with no progression.

  • wondering44
    wondering44 Member Posts: 247

    exbrngrl,

    It is shameful.

    My sister lived in my area three years ago when she had a heart attack at the age of 43. She told multiple doctors something was wrong. She was told she needed to lose weight. She was one biscuit away from a size eight. She was embarrassed and stopped going to doctors. She moved to a different state last year and went to a new facility this year for her heart. The new doctor reviewed her Medical Records. He told her he didn't have good news. He told her to prepare for a Multiple Myeloma diagnosis while she waited for the bone biopsy to confirm it. He said he was surprised it wasn't caught when she was here. Based on the time it took to get a correct diagnosis she no longer has an option to file complaints against the facilities air doctors that dismissed her concerns. If she had the time today her health now does not provide her the capability to fight anything other than her body. While she doesn’t have BC, she didn’t receive a better standard of care like many BC patients.

    Challenging a disjointed system is difficult. While it may take years to fight it, I am moving forward to challenge it. Today, I have those years to put in to fight it.

  • sarahmaude
    sarahmaude Member Posts: 326

    I’d like to note an observation I’ve had about standard of care from another who self advocates. There are the NCCN standards of care and likely other specialty standards. Some are going to be very difficult to change (order of treatment, staging). Others that are more practice or facility backed provide more choice. Sometimes too many choices! (Surgery is what comes to my mind: mastectomy variations, reconstruction options, lumpectomy, oncoplastic lumpectomy, oncoplastic reductions for symmetry). Since it’s step one for a lot of us, and sets a course of what subsequent treatments and follow up we have in the future, it’s important to know we have made our choice fully informed. My family doctor started out referring me to his preferred general surgeon who I found out did less than one breast surgery a week. I think with his 25 years, I would have been fine, but unhappy with my results. (He did mention that in rural areas a lot of women who could have had lumpectomies didn’t get them even offered because they didn’t have access to radiation nearby.) I went back to my family doc and asked for a referral to the newish BSO in our city. I also considered traveling, but didn’t need to. I’m glad I came here and became better informed about my options so I could advocate for my personal best choice.

    As I come close to finishing chemo, I mentioned to my MO how much my tumor pathology alarms me for distant recurrence. I was encouraged to hear that I might be a candidate to have surveillance through a newish option called Signatera. It takes my original tumor sample and essentially fingerprints it genetically. I’d have periodic blood tests that monitor for circulating tumor cells matching my tumor’s genetics. There are some excellent clinical results in recent studies showing it catches recurrence way before anything is observable through a PET scan or MRI. It also can check to see if immunotherapy has an effect so treatment options can be adjusted more quickly

    With radiation upcoming, I’m going to be asking about the possibility of getting my treatments in a prone position. I know that it’s not what they normally do here, and with daily treatments for a month, I’m not going to travel for if she says she can’t, but I know I have the choice and am glad I have information to ask a question.

    I agree with wondering44 that it’s important to know that one provider may not provide the answer that is most individually appropriate and that we all should know there may be a solution that is our Goldilocks answer. Maybe there are only three chairs to try, but gosh darn it, I’m not going to be forced into a bad fit just because it’s where I was pushed, I’m going to look around for my best realistic choice. When we have the opportunity, I think we can help others check around to see if some other choice or information can help them be confident about their choices.

  • threetree
    threetree Member Posts: 1,155

    Not quite sure where this link would fit thread wise, but since this is the most recent thread touching on these subjects of standard of care and self advocacy, I thought I'd post it here. Just came across this while eating lunch. Some thoughts from an oncology nurse who got breast cancer and switched to being the patient. It's not real deep or detailed, but she does describe being very taken aback by the system once she became a patient. Might be of interest to some:


    https://www.yahoo.com/news/nurse-became-patient-sh...





  • threetree
    threetree Member Posts: 1,155

    I just went back and re-read the article to the link I posted just above, and I discovered that it is not all that deep, as I mentioned, because it is really something of an ad for a book this nurse has written. I didn't realize that when I posted the link. When I re-read the article I followed the link in the article and saw that it leads to a book on Amazon. My intention was not to promote anyone's book.

    I think the basic principle still holds though, that when people like this nurse wind up being the patient it can be eye opening, and they can see a real need for changes in the standard of care, "the system", and get all of our questioning and self advocacy much more than they did while they were just medical staff and not patients.

  • gladis
    gladis Member Posts: 43

    The standard of care --should be- and what is happening

    are haphazardly strewn in my area.

    My surgeon and my family doctor told me that I was not to be concerned about a growing lump on my sole.

    At our one an only pre-op meeting and through email and a phone conversation,

    I handed them both a copy of breast cancer and lymphoma appearing simultaneously in many cases through a SEER Pub Med study done in NY.

    (see below pub med article for reference )

    I have most of the symptoms of lymphoma and was about to have a partial mastectomy in days.

    My family physician kindly told me I was "over anxious'' and needed to get that under control- that it wasn't good for my health.

    My male surgeon said it was rare and women only got NHL after breast treatment for cancer not before.

    (WITH THE STUDY in his hand and it highlighted in yellow on the first page, the only yellow, that this was not treatment induced lymphoma)

    .

    BUT, the standard of care for women is not being upheld by just the doctors, my derm appt for that 'lump' was less than 4 mins long with a female doctor (North Van)

    So how the standard of care is not being upheld is not just the male doctors or female doctors (in Vancouver Coastal Health, I've no other experience in BC) but also nurses!

    His nurse told me to limit my questions to 3- when I had gone in to his office with a list of ten. I have cancer, I have fear. wt firetruck.

    She told me that "I'd know if I had a life threatening cancer, because 'you know how those people look'' She even added "come on"

    • PMID: 11079174 (* I highlighted the last line)

    I have the emails- I pleaded to my family physician until he said he would consider a NON urgent Ultra Sound

    This was APRIL 2022 people, while I'm scared and dealing with my IDC post complications

    (again no one even returned a call for 8 days post op-it was this board that kept me sane)

    I was the obedient patient and waited until my NON urgent US last week (JUN 8)

    It took 10 week it took to get an ultra sound for what may be the lump that ends my life .

    The earliest US was June 8- because the standard of care does not include respect for my professional information, nor all my medical files, or my concerns not even with a medically published pubmed study from 2000 ,physically in their hands, and all our conversations, my wonky blood work and my pleading emails as far back as April.

    This side dish of cancer is either sarcoma or lymphoma according to Dr. Bicknell (LGH)

    Here's the report from my US last week

    CONCLUSION:

    Palpable finding is a solid mass and not a lipoma, and because it is separate to the fascia

    this is not a fibroma.

    Differential would have to include a sarcoma/lymphoma/melanoma given the vascularity and MRI

    with gadolinium is recommended which should be done in the next three weeks time.

    3 weeks is now 2...I need a contrast MRI referral for them to even consider a biopsy!

    and I will even pay! I've been asking for a week to please let me have a referral -this is cruel.

    I'm told :

    "The doctor does not make phone calls any longer, nor does he call with results anymore due to the BC Health Province new directive of less calls and more patient to physician activity---- I was told today by his receptionist.

    and my earliest appt is July 6th at 11:50-he's booked

    So far, Not one of these doctors will give me a referral to go to the Mainland for a private paid by me MRI

    "Wait it out, BC cancer will call, wait another week. "

    What standard of care is this?

    My family doctor told me to go to the USA. He did.

    I'm sad that this is happening to me, but worse I know

    I'm not alone,

    I agree the standard of care is the floor-

    I'm hurt for us as women, maker of humans, lover of family and friends, it is humiliating

  • lw422
    lw422 Member Posts: 1,373

    SarahMaude--good post. When I first saw this thread title I immediately thought of the NCCN Standards of Care. Hence my confusion when I posted my first response. I imagine most newly-diagnosed patients are much like I was... blind sided, anxious and terrified. I didn't know what I didn't know when it came to treatment, so heading for the nearest NCCN treatment facility was all I could think to do.

  • ratherbesailing
    ratherbesailing Member Posts: 116

    I'm with SarahMaude. NCCN guidelines are a great start, but there is still much interpretation on what standard of care is. For instance, post-mastectomy radiation (PMRT) is sometimes recommended by NCCN, but there are gray areas. Sometimes treatments should be "considered" depending on tumor characteristics.

    I was over-radiated at a major cancer center (not just my opinion, confirmed by another radiation oncologist.) When I questioned my RO about it a year later, he defended his decision by quoting several studies. But not one of those studies addressed my particular tumor profile. When I pointed this out - and pointed out that those studies also showed a doubling of the risk for lung damage (which I had) - he finally said with exasperation, "But that's what we always do." Basically said no consideration for the individual - it's a factory.

    But even that doesn't seem to be true. Two years later, one of the department vice-chairs wrote an article published in a major journal, stating the hospital radiation oncologists and breast surgeons had recently held meetings "to review our own practices and insure that all recommendations for the use of PMRT would be uniform among ourselves." Those new guidelines said I would likely never had radiation at all. It seems to me one of the largest cancer centers in the country had been little better than the wild west.

    Knowing what I know now, I would ask beforehand about what guidelines a particular physician is going by in their treatment recommendation. Do those guidelines reflect an individual's unique profile. How strong is the recommendation. And I would keep in mind that hospital guidelines will undoubtedly evolve, just as NCCN guidelines do, when new research comes out.

    But we are patients, not machine parts. And we deserve to be treated as human beings with individual needs and treatment goals.

  • wondering44
    wondering44 Member Posts: 247

    One day I decided to apply to law school to see if I'd get an acceptance letter. When I did get that letter, I pondered if I would take that "insane" leap to spend my days studying law. I considered the time spent away from family and enjoyable days. I also thought about what would happen if I looked back a few years later to say I could have been done with law school if I had just started it. So, I jumped in and studied law as an extracurricular activity. That education did not prepare me for the medical education I received through a cancer diagnosis but provided insight into how little recourse of action cancer patients have because cancer is not a quick medical diagnosis or fix.

    When I jumped on the cancer rollercoaster, I discovered that I knew little about medical care and learned more on this site than at the local facilities. I had never considered questioning doctors and had never heard of the NCCN Guidelines. Once I switched my care, I began to educate myself on the standard of care based on the MD Anderson standard of care, which was completely different than what I had previously experienced. Sheesh, at the number of discrepancies I found in the local facility care v. NCCN Guidelines.

    My pondering brought me to a place to consider many other women who get the same or less acceptable treatment than I received in my local area. I do not understand how the guidelines are available to patients, yet facilities choose to disregard them. I do not know why a published standard of care is not standard in every facility. I do not understand why women must fight facilities or medical practitioners for a better standard of care. A woman who receives a cancer diagnosis should only spend her time and mental well-being battling cancer.

    Mental well-being is of high importance during treatment, and being dismissed by practitioners diminishes a woman as a person and a human being. The feelings of inadequacy, shame, humiliation, breach of trust, and crazy are unacceptable. To be able to make the statements, "I am right. The doctors were wrong," should not happen. Yet, I hear and read it often. While a wave of relief may come when the proper diagnosis or treatment after a patient's insistence, how unlucky is it to be satisfied with losing body parts, mental health, or time to say, "I was right."

    And all of this has led me to a challenging what I consider an unacceptable standard of care so many women find in their journey.

    exbrnxgnrl - I am glad to read you have not had progression for eleven years. Thank you for sharing your wealth of knowledge on these boards. I have learned a lot from you, beesie, and moth.

    lw422- Thank you for sharing your experience at a phenomenal facility. I didn't know much about it last year except that I had heard the name, which was a cancer facility. It is great to read that MD Anderson and other facilities are available to women who don't know much about them.

    Threetree- I loved the read. Thank you for sharing it.

    sarahmaude - Thank you for your information. It seems every day there is something new to learn about cancer and treatment. I cross my fingers your end of chemo goes well for you.

    ratherbesailing - I love the username. Thank you for sharing your story. So right that we are not machine parts and hindsight is 20/20 to ask physicians about guidelines and individual treatment plans.

    Gladis - I am sorry to read you are fighting more than cancer. Thank you for sharing your story for others to read. You are not alone in your battle against the standard of care you are receiving.

  • sarahmaude
    sarahmaude Member Posts: 326

    wondering44, one statement in the article you linked struck with me. It’s the idea that a good patient is meek. I have also felt that at times. In the US I never have more than 10 minutes with a doctor. Most are in exam rooms where the disparity between doctor and patient feels very pronounced. I loved that my BSO brought me into a room with a small breakfast type table where we sat and discussed plans on a more equal plane.

    I find myself apologizing for bringing up studies and hard questions. I don’t feel that way with any other professional relationship. Medicine is such a blend of highly individual, practice based, standards based, and provider’s personality based interaction that is tainted with financial pressures created by insurance companies and realities that the doctor has to earn a living and we have to pay what insurance says we must. I’m normally a very direct and assertive person. With our medical system, I often feel constrained by time and expected behavior standards between doctors and patients. I’m glad I found doctors who seem more than willing to take the time to treat me as a human with intellect and a right to feel confident in the way forward we agree upon.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,636

    I will say that with respect financial pressures on providers and insurance issues, the medical model that my large HMO follows eliminates these issues. Everyone from doctors to custodians are employed by the HMO and are salaried. All hospitals, pharmacies, labs and testing facilities belong to the HMO as well. I can only use their facilities and doctors unless I'm in an emergency situation.It doesn't make things perfect but it eliminates that aspect of medical care. By joining the HMO you are insured by them though they offer different plans (often through employers). They also place an emphasis on wellness, via classes and host weekly farmer's markets on their bigger campuses. Of course, I'd rather not have mbc and the need to avail myself of their services but I am not complaining as I approach 11 years with mbc and no progression.

    I don't expect perfection from my medical providers as they are human but I have been fortunate so far save for the pneumothorax incident. I know this type of health care is not acceptable to everyone as some find it limiting. Fortunately this HMO has a large presence in my area so it has been wonderful for me.

  • alicebastable
    alicebastable Member Posts: 1,933

    I'm also in an HMO as my Medicare Advantage plan. If I lived in a small town in a rural area, it wouldn't work. But I'm in a city, so my plan gives me access to a lot of providers and facilities. I went with a smaller hospital that's affiliated with a large teaching hospital, and I've been happy with most of my doctors. I did switch my PCP, but the bad one pre-dated my current insurance, and my RO was kind of a pain, but that was a very short-term relationship. He wasn't a bad doctor; our personalities just kind of clashed. The only doctor I see briefly is my urologist when there's nothing questionable on my scans and I don't have any current issues (I had a nephrectomy four years ago). But when necessary, he spends more time. I saw my MO yesterday for my 6-month visit, and it was a little shorter than usual because I'd just had my mammogram and BS visit the previous week, so I didn't need the physical exam. But she went over my blood work thoroughly, asked questions, answered my questions, and ordered a bone scan to make sure my arthritis is just arthritis. My PCP is practically a mind-reader and thinks of things and schedules tests or procedures before I need to ask. My BS is always open to any conversation and I've even asked her non-,breast-related questions that she'll answer or look up. She also got certified on ultrasound and has one in her office now so she can do them on the spot to save her patients time, worry, and expense. I hit the jackpot with my current doctors.

    I know there are bad doctors and some who are rushed, but a lot of us do get a high standard of care. I want to make sure a generalization isn't made that says all patients get a low standard of care based on someone's personal experience. And I would never assume everyone has gotten great care just because I have.

  • lw422
    lw422 Member Posts: 1,373

    "I know there are bad doctors and some who are rushed, but a lot of us do get a high standard of care. I want to make sure a generalization isn't made that says all patients get a low standard of care based on someone's personal experience. And I would never assume everyone has gotten great care just because I have."

    Excellent, Alice.

  • sarahmaude
    sarahmaude Member Posts: 326

    I hope no one thinks I was criticizing the care I’ve received. The more time I have been with my three BC oncologists, the more confident I am that I have a fabulous team. I know from observation that doctors have huge patient loads. But, taking a lot of patients also means I got in to see each of my doctors pretty quickly. I'd rather have enough time to get treatment started than lengthy appointments that meant I'd have to wait months for an appointment. Making the most of short appointments is possible for sure.

    I also know that insurers are also factors in what care we receive within our plans. Insurance reimbursements definitely influence how much time our doctors allocate per patient and what treatments we qualify to receive in our plan. Not a criticism. It’s reality.

    As one example, my MO has been successful working with my insurer to make sure I get the right combination of supports for my chemo. She was worried I wouldn’t qualify for the Neulasta shots, but I did. Seeing that my neutrophils dropped to almost zero in cycle one I’m grateful she did. I did ask her about neutropenia, so I’m not sure if my question influenced her to try the pre authorization or not. I absolutely feel that patients need to be as informed as they need to be and are able. I think we need to believe that asking questions and fully and truthfully informing our providers is our responsibility.

    In my state, almost all insured individuals are on some sort of Blue Cross plan. Because they are a monopoly, providers and facilities have limited ability to negotiate with them. For a few years, I had a United Health Care plan. Because they are small in our state, they had a small network compared to other states. I had fewer choices in care and ended up traveling about 100 miles for a child’s surgery since the pediatric specialist here didn’t accept our insurance.

    I’m going to say, I’m being very well cared for. That doesn’t mean I’m not going to continue to self advocate. And it doesn’t mean I don’t notice a health care system that is challenging in many ways: for patients and providers.


  • wondering44
    wondering44 Member Posts: 247

    sarahmaude - I didn't read your post as criticizing your care in any way. I was glad you shared the information about Signatera. I had not heard about this and learned something new today to research. Thank you for sharing.


    My thought process in my post was not to generalize that "all" women receive a less than a subpar standard of care. I am happy to hear and read about women who get excellent care. My mother-in-law received excellent care for her first BC treatment years ago. She chose a different facility in another area when she received her recent diagnosis and treatment plan at a facility. I was ecstatic to listen to her new team's different treatment plan, which was very different from the facility that diagnosed her new cancer. I have another friend who had treatment at a different facility here and had outstanding care. My insurance was out-of-network for to use the same facility she did. I checked before I made a decision on what facilities to use for my care.

    I, alone, decided to use those facilities and medical professionals for my health care. That choice cost me more than I wanted to pay. That choice affected not only me but my partner too. I do not live in a rural area. I have excellent health insurance, and I have a phenomenal support team. For one short time, my prior care brought me to a lonely place in my life, even with my outstanding support team. I realized I couldn't be the only patient getting the same treatment, and there are some women with less health insurance or support than I had. My post was to support other women who have had less than an adequate standard of care. I can work to make a difference for another woman who will one day walk in those same doors I did or another woman who will walk through doors like the ones I did here.

    Sharing negative experiences could educate others that they are not alone in their negative experience for treatment. Sharing positive experiences in health care could inform a woman that there is much more to choose from to get it right, like others who found the right medical teams and facilities.

  • sarahmaude
    sarahmaude Member Posts: 326

    wondering44, I agree with you. This is a thought provoking topic. I know that even if 90/100 people get good enough treatment without ever speaking up, it’s always important for us and our family members to be active participants in our care. Just feeling empowered to clarify something or asking about alternate choices is helpful to doctors and patients. Without being mind readers, doctors need to know what is important to us. We also need to be sure that we know what to do when we leave the doctor.

    And, making sure we choose doctors that encourage that communication is important to our outcomes. It’s okay to choose to go out of network if we accept increases in out of pocket costs. It’s okay to travel, or obtain a second opinion, or investigate options. Decisions regarding cancer treatment need to be made fairly quickly, but that doesn’t mean they need to be hasty

  • gladis
    gladis Member Posts: 43

    I don't think you are critical of your care sarahmaude, it isn't wrong to notice and take note!

    Changing this medical standard of care or "titanic' will take way more than us compiling anecdotal incidents to change how the medical field sees us and only if the awareness, resources and a serious "setting aside" of the time necessary for that change to take place.

    I wonder IF, a survey with your statement:

    "I find myself apologizing for bringing up studies and hard questions. I don't feel that way with any other professional relationship"

    ----would get a bazillion or fewer "likes" ?

    Grateful this Father's Day that we are not all experiencing cancer treatment at the same base level, and that there are amazing teams of medical professionals who do treat women as equally knowledgeable individuals worthy of respectful inclusion in their own futures.

    ( I mistakenly first spelled 'won' futures instead of own, maybe I should have left it )

  • mpetago
    mpetago Member Posts: 51

    I can relate, I've been challenging the standard of care I've had since I was a teenager. First, ovarian cysts that were assumed to be 'low pain tolerance' until one ruptured at age 13, then endometriosis I was 'too young' to have at age 17 (confirmed with laparoscopy at age 18), small breast lump and other weird symptoms at age 27 that was written off as a mental health issue (sent away with Prozac prescription I didn't fill), fighting for over a month for a mammogram at age 35 to check for the breast cancer I was 'too young' to have but did have, and then multiple issues with treatment and reconstruction, on and on and on...

    It's exhausting and immensely frustrating and now that I'm finally going in to menopause and having extreme issues from that, it begins again. Like you, I've realized that I have to educate myself to the fullest extent possible and advocate constantly, because no one else is going to do it and it will be at my expense. I'm completely at peace with the decisions I've made and pushed hard for regarding treatment over the years, glad I trusted my instincts in many situations and just wish it wasn't necessary to do so.

  • SalliesMom
    SalliesMom Member Posts: 16

    I do not post often, but I thank the OP for giving me the opportunity to thank this site, and all of these threads, which gave me the clear thinking during an overwhelming diagnosis, that if I did not advocate for myself, no one would.

    I was diagnosed in April, 2021, after a diagnostic mammogram for a pea sized lump I had had for a while and chose to ignore.

    The news was not good. A mastectomy was cancelled by the surgeon, in between surgeries, who left me a vm to tell me my pre-op MRI was "disappointing". I saw a few more doctors at this nearby "cancer center", where getting info and answers was like pulling teeth, and the modality of the messaging was downright insulting. And cold.

    They treated me like there was no hope, and I didn't like the oncologist's attitude. (I have other patients, too. You need to be nicer to my staff.....)

    I had a "difficult" case, I know, and was getting branded as a "difficult" patient, I'm sure (because I got a letter telling me that, albeit AFTER I "quit". In actuality, it was just a CYA letter from a hospital where a cancer patient actually walked away from treatment! I'm not stupid. And they didn't invent gaslighting).

    Anyway, frustrated by what could best be described as "communication issues", and tired of not getting answers or at least being directed to where I might find answers, on a day in June, 2021, I excused myself from my oncologist's office to "use the ladies room", and walked out of the building, vowing to myself never to return.

    I live rurally, but I'm not far from several major cities. I went to work finding who I thought would be the best surgeons, oncologist's, etc., for me based on my specifics which was limited to the scant information I had.)

    And yes, it is one of the top cancer and teaching institutes. But while I was initially staged at 3b by people I felt didn't care whether I lived or died (maybe it was the Medicare - they weren't making a lot of money off of me), one year later (and a mastectomy, neoadjuvant targeted therapy), I have been diagnosed as having "No evidence" of cancer in my body!

    . Yes, I am incredibly blessed. No question. And I'm not out of the woods yet and will have to be vigilant the rest of my life - as we all do.

    But where would I be now if I didn't take the bull by the horns? I don't know and I don't care. Possibly in the same place. (Remission). But I am not going to waste one second of my prescious time worrying about what ifs, (like what if I hadn't missed mammograms!) whose feelings I may have hurt, what they think of me, or the like. The stress, alone, from the people I had to deal with probably would have killed me.

    You do what you feel you need to do for yourself. As a very wise psychiatrist ( who knew me pretty well) once told me: "You should trust your instincts. They're always right".

    I wish all my sisters here love and light and good health.

    And, this is not a "journey". That's what "they" want you to think. (There's more money in it).

    Think of it more as an "episode".

  • 5kmc
    5kmc Member Posts: 11

    Hi wondering44. I too am in the New Orleans area and would love to communicate with you if you'd like. Not sure how that works on this site. I'm post surgery, radiation and trying to take an AI that I stopped after 5 weeks because I was a total wreck. Crying all the time, mad all the time and did'nt want to do anything. I know 5 wks is nothing, but if I hadn't stopped I don't know what I would have done. Have an appt with NP in survivor program 7/12, and feel like she will chide me for not "waiting out the side effects." She initially told me "I'd always find an excuse not to start the med" when on my first appt when her I hadn't started it yet. And I'm not saying I won't ever take it, I just don't want to feel like that!!

    Anyway doing my best to advocate and read and learn as much as I can.


  • wondering44
    wondering44 Member Posts: 247

    5kmc,

    Please send me a private message. I'm happy to talk privately. I will send you a PM too in case you haven't used messages yet

    The AI made me a wreck too after I thought I got my mind right after tx. You are not alone. 😊

  • lilygizmocat123
    lilygizmocat123 Member Posts: 13

    Thank god I just read your post WE are 2 peas in a pod! I just started this misery and I am already butting heads! I have a LARGE 4 inch lump that literally developed in a month! Many doctors think I'm lieing or delusional! One mam 2 sonogram later all I got told was "abnormal" thats it! No specifics, no pictures, no explanation...and I'm a mom so I know when someone is lieing! I knew it was bad and I wanted the truth but we had to keep playing "pass the buck" ...one doc, next doc to 3rd doc who did another mamm and 2 biopsies ( one breast one lymph) They gave me the "painless" biopsy crap ...I said don't LIE! I said give me ALL the lidocaine at once ...do not do a little...see if it hurts ...then more! Just dont!! Anyway directly after biopsy(hasn't been to lab) she said its 100% cancer no doubt! She throwing metastatic around...and telling me I can get this cut off, that cut out ....poison ( chemo) poison ( radiation) I said lady QUALITY is more important to me than quantity! Metastatic?? 8 years of operations and poison vs 2 years of a fairly normal life??? I'm not gonna lie its been a tough few days stopping myself from driving off a bridge! This system is disgusting! Why are we still getting breast cancer and why do they keep doing the same damn treatments? Where is all the research $$$ going??? CEO'S thats where!! Believe me I know YOU and WE are our ONLY and best advocate!! YOU must have your own back! These doctors see thousands of patients we ARE nothing but #'s!!! Its sad but TRUE!!

  • mpetago
    mpetago Member Posts: 51

    The money dedicated to research is a tiny fraction of what's raised, the vast majority goes to 'awareness' and 'education,' and yes, big salaries to the heads of the fundraising organizations. Everyone knows breast cancer is a thing and you should get a lump or change checked out now. How about the bulk of the money goes to research into better early detection methods for all instead of teaching women to find their own probably-advanced cancer, and also figuring out how to stop metastasis? It's outrageous. I like the 'Think Before You Pink' campaign for this very reason - if it doesn't fund research, pass it up or demand to know why and push for better.

  • wondering44
    wondering44 Member Posts: 247

    sarahmaude - "Just feeling empowered to clarify something or asking about alternate choices is helpful to doctors and patients. Without being mind readers, doctors need to know what is important to us. We also need to be sure that we know what to do when we leave the doctor."I agree wholeheartedly. I did get educated on this until later. I am happy to read you got great care. :-)

    gladis - "I wonder if a survey with your statement: "I find myself apologizing for bringing up studies and hard questions. I don't feel that way with any other professional relationship." ----would get a bazillion or fewer "likes?" I think it would get a bazillion :-)

    mpetago - "It is exhausting and extremely frustrating. I am glad to read you pushed and trusted your instincts early on." Cheers to you for getting it done right. :-)

    salliesmom - "Great to read your post, "you took the bull by the horns." I am glad you are not questioning "what if" had you stayed your original course. Kudos to you! I am happy to read your rocking NED! That is always a beautiful read. :-)

  • K-Gobby
    K-Gobby Member Posts: 144

    I wanted to share after reading all your posts. I always say I found my lump then contacted my friends PC doctor. Within a week, I got the PA in the hospital. She got me in for a mammogram and us in the week. A biopsy was added as the Dr was available. With in a week, stage 2, 5 cm. The PA suggested a local surgeon, or said choose COH.

    My first visit there was with a BS. She wrote out my choices of treatment. I kept her paper. She got my MO. She also ordered the MRI. Bone scan and CT scan. Covid was still a problem in 2021. But opened way more since 2020. I feel blessed I got to COH when I did.

    Until last Friday, I only met with my MO and her PA for one year. Also add in my BS and the Gyno Dr. The COH is big on scheduling. Visits take some c time to get to, but I have asked every question I had. This last Friday, my team was on vacation. I had someone new. She identified my arm pain as lymphodema. She scheduled out my next CT, bone scan and US.

    My insurance has covered. But the cancer centers of America have now been bought by COH. That many more people may just get better, target Care. Yet, how will the COH doctor team handle all those people?

    We must advocate for ourselves. Ask questions. Bring someone with us for support.

    Here we can meet people like us. Fearful. Hopeful. Joyful. Sad. Supporting each other.