STEAM ROOM FOR ANGER
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Sorry,- some guidance is every 2 years
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Kikomoon, have you told your MO about the issues with the front office. I was having customer service issues with the front desk and mentioned them in passing to my MO and he had no idea there were issues! After talking about it, it seems he brought it up to whoever and things have been a lot better.
Sadie, I’m so sorry your not getting the care you should be! I hope you were able to get some imaging. But if not, I agree go see your GP. I was doing telehealth up until September. Now I get to see all my specialty care doctors in person. I think you should definitely be able to be seen in person!
As I go to a military hospital for care, I am unable to really choose my care team. My MO changes every 18-24 months due to military rotation. Thankfully my nurses are a constant. Next week I meet with the palliative care doctor and I’m hoping I like her and if so, that she’ll become my constant. Being in the military and not looking sick, I get a lot of side eye if I take the elevator up or down one floor or when I walk slowly up the stairs. None of these know what’s going on with me, but it just reminds me that we shouldn’t judge people because we don’t know what they are going through. Sigh..
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Oh dancemom it is stupid. Yearly needs to be the norm no matter what if you ask me. Right now I'm on a 6 month screening on my "non- cancer side" even because of issues on there. It stinks all around. Cancer is the pits no matter what. Are there people who ignore and do not go for screenings and then it is way late and advanced, ,yes. Then it may have been caught earlier if they had. For those who are doing what guidelines are and are at the mercy of insurance payments as well as a result it is something we hold our breath through and get it done and worry ourselves over.
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Dancemom, I can so relate. I did my annual appointments and mammograms (including 3D) on schedule. My de novo diagnosis was the result of following up on slightly wonky liver enzymes out of an abundance of caution. It really ticks me off when people infer MBC is the result of some perceived failure on the part of the patient. It's appalling how victim blaming is suddenly okay for MBC, even within the BC community.
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so I did see my MO this morning and voiced my concerns and apparently I’m not the only patient having issues. That’s not surprising, I never took it personally, they are just Totally dysfunctional. She did say they are woefully understaffed and are introducing some sort of new triage system soon. I’m not sure I feel any better. I continued to have issues getting my refill this afternoon. MO said she put it in weeks ago, pharmacy is pointing to Dr saying they had questions and can’t reach her so I need to call her. Dr says she’ll put it in again. Takes 24 to 48 hours to process. Pharmacy rep says one thing, the next rep says another, and I’m in the middle with no power, being told I need to call here and there to get things done. Bullshit I have a job, this is yours y’know? Tired of being quickly routed to the voicemail black hole. I was at my wits end this afternoon and called my nurse navigator to see if she could help. I really ought to just transfer to another provider system but I do like my MO.
Wow this turned into another rant! Feels good though. This issue seems so piddly in the grand scheme of things. I can start my meds a few days late. But it makes me wonder-when I do have really big issues are they still going to ask me for my copay then route me to the black hole?
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My late mother believed that I developed mbc because I waited 13 months between mammos and the situation would have been entirely different and curable if I had gotten my mammos at the 12 month point. Despite my best efforts to explain, she held firm in her belief .
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exbrnxgrl, how awful!
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Katyblu- I hope you like your new doctor. My mom has military benefits due to my dad’s service and has had really good doctors. When people give you the side eye just give them full on stare and go “what?” Typically throws them off.
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Interesting topic, mammograms. I never had a mammogram til I developed my breast lump. Could my Stage IV de Novo cancer have been caught earlier? Maybe. But I sure have seen enough women here and elsewhere who DID get mammos on schedule and their cancer was not “found early".
My KI67 was ridiculously high something like 75%....a very fast growing cancer.
I did do self exams and it sure seems like that 2 cm palpable lump came out of nowhere.
I decided not beat myself up over not getting mammograms since a.) cancer was beating me up enough already and b.) neither I nor anyone else is omniscient so neither I nor anyone else can know if my cancer could have been caught sooner on a mammogram.
How about young women who are below the recommended age for routine mammography but still develop breast cancer, sometimes de novo Stage.IV? Should they have done anything differently?0 -
I had a manual breast exam by my PCP about a week before the mammogram that found the tumor. She didn't feel a thing. I had never felt a thing.
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I didn’t even find the lump through self exam. I was sitting at my computer and I put my hand on my chest to lean forward and squint at the screen and under my hand I felt a big fat grape under my skin. The way it was positioned, at the perimeter of my breast, made it easy to feel. I didn’t have to press down or dig around, it was just THERE.
Which leads me to believe if it was slowly growing from the size of a small gem to the size of a pea to the size of a fat grape — I would have noticed.
BUT - like I said , I’m not omniscient. No way to know what could have been. Maybe it would have been found, or maybe my yearly or bi- yearly (CDC Guidlenes now, I think?) mammogram would have happened before it was detectable and it grew in the meantime
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I had at least ten years of annual mammograms. Ten days after the last one, I felt the thickening in my breast. Like you, Olma, it wasn’t thru self exam. I was lying on my back in bed and casually went to scratch my midriff and in doing so, my hand brushed against the underside of my breast and there it was. That was December. My gynecologist had done a breast exam on me in October.
Caryn, that is so terrible that your mom was so ill-informed about the timing of mammograms.
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I think it goes back to the EARLY DETECTION SAVES LIVES line. Until you have gone through the meat grinder of a bc dx, you have no idea of how false that statement can be. How many women on here have signatures of rather "small" tumors, or hell DCIS even, who then went on to mets OR had a surprise mets dx at some scan point after chemo or surgery or whatever? How many are missed because the tumor was growing in a strange place, hidden by really dense tissue, growing in a sheet rather than a lump, fast growing, multiple growths, etc? There are so many variables because everyone is different with their personal physical composition and cancer profile. But the messaging and color-attachment is all very homogeneous.
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Yes and then there are articles like this, along with a contingent of health experts, who say that mammograms actually aren’t preventing very many cases of life threatening cancer and may be finding cases that never would have become invasive, etc.
https://www.statnews.com/2016/10/12/mammogram-overdiagnose-breast-cancer/
Standing where I am today, I tend to think it’s okay to err on the side of caution when it comes to cancer screening - but still, let’s not give mammography more credit than it deserves. We need “the cure” not more screening. Screening never cured anyone, nor can it prevent someone’s “found early” breast cancer from metastasizing.
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On the other hand, had I stopped getting mammograms at the recommended age of 75, who knows where I would be today? Diagnosed at age 77 with a grade 3 non palpable tumor, only the tip of which was seen on mammogram. The tumor was so close to the chest wall that it could not be felt.
Those who discuss over diagnosing usually are looking at stress related to a false positive. Personally I prefer that stress to the possibility of dealing with an undiagnosed malignancy.
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The whole "what if" and "why" seem to be pointless for many of us! We have CANCER! It's too late to go back and change the frequency of our mammograms, or change the way we ate when we were 22 (of whatever). It's like telling someone who gets rear ended at a stop light "Well, you shouldn't have been driving your car. Haven't you heard about distracted drivers???" Talk about blaming the victim!
OK, my mini rant is over - for now...
Carol
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Yes what Sunshine said. I’m not arguing against mammograms, I’m arguing against blaming people with advanced cancer for their disease.
Also, the article I linked to is not about unnecessary emotional stress caused by mammograms. Here’s a quote
“As evidence keeps growing that early cancer detection (of prostate, breast, thyroid, lung, and others) saves far fewer lives than everyone hoped, more and more experts are trying to change the conversation.“
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Because of the early detection mantra, too many people believe that those of us who are stage IV de novo did something wrong or neglected getting mammograms. I really want to throw my hands up because I do get a bit weary of explaining how things work with bc.
My mother was a lovely woman but she was quite superstitious. She had a hard time believing that sometimes things, bad things, happen for unexplainable reasons. When no rational explanations were found, she sometimes delved into the absurd. Some of you know that my younger sister passed away from an aggressive uterine sarcoma at age 50. She has recently started a new job. The person who held that position previously had passed away from some type of cancer. My sister had lived an extremely clean lifestyle since her college days. She had done everything “right”. So, my mom and dad speculated that perhaps her office chair was the same chair that the previous, and now deceased, employee used and since my sister sat in the same chair that’s how she got cancer! I kid you not. Mmom and to some extent my dad just couldn’t believe sh*t happens. My mom was really wonderful but her superstitious beliefs and lack of understanding of science/disease/medicine lead to some strange “conclusions” on why things happen in life.
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Just 4 years ago (2017) I didn't even have a primary care doctor! My insurance co at the time required that I name one. I set up an appt. with hubs doc who was also treating my in laws. I had just turned 56. Walked out of the appt with 9 orders! I started with the lab work, and was put on cholesterol meds. Did Ok with low dose CT lung scan, failed the DEXA scan, and of course failed the mammogram. My 1st one ever! I felt my own lump getting into the shower one day about a month after my appt. I already had the mammogram order so they asked me to get it changed to the 3D diagnostic, which they did. I knew when I felt it that it wasn't right and that it shouldn't be there. Would earlier screening have caught it? Probably so, however, I'd most likely be on this same treatment train. No telling if earlier screening would have found the LCIS in my other breast. Once the cancer was found the surgeon and radiologists put me in for a "1st tissue" biopsy on the non cancer side. That wouldn't have happened so how long would it have been before the mammography as it looked like a benign finding and follow up in 6 months.
I don't beat myself up about it. So I had a larger tumor and it would have been every 6 months checking on the right side, which actually got fast tracked. I believe i would still be in this protocol.
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Had clean mammogram, had lump just a few months later.... Stage 1A. Poster child for 'oh good you caught it early!" Did every single aggressive treatment they recommended....booom, metastasis 26 months later.
Beaverntx, overdiagnosis isn't just false positives, it's also dcis and small, low grade tumors which were never going to metastasize & which were thus never going to be life threatening
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Mammograms - I was pretty good about getting mammograms. And the last few years, they always found dense tissue that merited a closer look - but the end result was no cancer. I skipped the mammo in 2020, because - COVID made me leery of hospitals, and everyone was putting off things that could be put off.
in 2021 I noticed a soreness around my nipple. No lump, just extreme sensitivity if I bumped anything. I figured it wasn't anything, until once when my dog jumped on me and happened to hit that spot and the pain was BAD. My gynecologist had retired, so I made an appointment with the one who took his place, for a checkup. she examined the spot, said it didn't feel like anything, it was probably scar tissue from a surgery I had long ago to remove a nevus. I made an appointment for a mammogram, and two days before, the center cancelled it because my insurance didn't approve it. What the hell? Medicare not paying for a mammogram? I called Medicare, it was a coding issue, apparently the breast clinic of a major medical center couldn't figure out how to code for medicare patients? So I waited for approval, re-cheduled, got the test, and it came back with two spots of "concern". The radiologist told me he didn't think it was cancer, but recommended a biopsy to be 100% sure. He said rather than him doing the biopsy, I should go to the breast cancer specialist. OK - so months after originally finding this spot, I go to the specialist who told me he was "98% sure" it wasn't cancer, but did the biopsy to make certain.
Then everything went to hell. Nobody thought I had cancer, until I did. Would things be different had I scheduled a mammogram in 2020, when COVID was running rampant through all the medical centers? Would things have been different had the billing department not screwed up the billing causing a delay in my mammogram? I don't know. I do know that my mammograms in 2017, 2018, and 2019 were clear and that I had none of the risk factors. No breast cancer in my family. (until there was) And that three doctors didn't think it was cancer, so I wasn't rushing to get it taken care of. It was probably 8 months between "hey that's weird, my nipple huts" and getting surgery. Maybe if I had been a hypochondriac that ran to the doctor with every little symptom, it would have been caught earlier. Maybe not.
So yeah, I share the anger about how early detection prevents breast cancer. It's just not that simple.
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tinker, even if you had found it earlier, what would have been different? They would still have found cancer, just a bit earlier,
Screening does not prevent cancer. It only detects it.
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tinkerbell- that really sums it up. It's just not that simple.
It seems like every provider asked me, "So, you never had breast cancer before?" (like I would forget to tell them) when they found it in rampant my liver first.
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Interesting discussion on mammograms. I was one of those too young to be screened as I found the lump when I was 38. Oddly enough, it was my first ever self exam. A health manual came in the mail that was produced by our provincial government. I was flipping through the sections... what do you do for choking, etc. ... and came to breast health. Thought I really should be doing those and voila, lump in my right breast. By that point it had likely spread and so here I am...
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I think some believe that if you do the “right” things that you can avoid all disease and adversity in life. Although I believe that we have a good bit of control over many things in our lives, bad stuff does happen and there is simply no way to prevent all adverse happenings.
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I had a mammogram about a year prior through the mobile clinic & I was good about self exams. I found a small lump & was sent to have mammo & US, then biopsy. The mammogram only showed the one small lump in one breast & a tiny shadow in the other, not the 40, yes, 40 that the surgeon found upon doing my bilateral mastectomy. Apparently I had very dense breast tissue. I had a radical mastectomy with no extra tissue left for reconstruction, so clear margins, chemo, 6 weeks of radiation, then tamoxifen for 5 years & AI for one year before mets.
I am slim, active, eat well & rarely drank (then) I was busy with my own business but none of that matters, only pink ribbons & a mammogram.
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About 7 yrs before my CA dx I had biopsies in left breast for what was found to be calcifications. Cancer was found in the same general area in 2019. I did go yearly but never really expected what did happen. Now I'm on the 6 month recheck train. I never found a lump...I told surgeon it all felt the same to me. My outlook is we never know what the heck life is going to throw at us. I have a very over weight friend who worries CONSTANTLY about dying. I told her today why don't you just live the best you can? None of us knows when our time will be up. My SIL also has CA of a different kind and we agree that it is always in the back of our minds but we still have good things in our life to enjoy and try not to be defined by our dx. Mammo's have helped with dx but they sure aren't the magic bullet. BTW my SIL lymphoma was found when she went for her mammo 3 yrs ago.
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Because I was a smoker at the time, my MO ordered a no-contrast chest CT before my lumpectomy. My lungs were fine, but that's how my 7 cm kidney cancer was found. I was lucky that it was perched on top, or it wouldn't have been caught. Like a lot of people with kidney cancer, I had no symptoms and even many of those with much larger tumors (double the size of mine) are caught by surprise when being scanned for something else. Thank you smoking? Thank you breast cancer? Lesson: We really don't have many clues as to what our bodies are up to. All kinds of crap can be going on in there waiting to bite us. Get the available tests for the few body parts that can be checked, and hope for the best with the rest.
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AliceBastable - ditto sneaky kidney cancer - I had a coworker in her 30's whose kidney cancer was found during pre-surgery workup for removal of excess abdominal skin after successful bariatric surgery.
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Part of the anxiety of having tests/scans is getting those incidental findings. Yet, it can be a good thing when a cancer is found early as well as other medical conditions.
I did enjoy having no tests or appointments this month. Next month I will meet the NP at the BS office (she is out on medical leave), so hope that goes well. It should, just nervous since I've never met this person. Then I have to do a liver function blood panel and see GI doc Dec 1. Yuck. CT scan of lungs and dexa also due in Dec. Yuck Yuck.
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