STEAM ROOM FOR ANGER
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My docs are all in one group. I'm able to book a year out. Depends on how they do their calendars. The surgeons office I used to work for only booked 3 mo out because they didn't know their schedule, vacation, talks, etc further than that. And I can tell rescheduling all those pts is major time consuming and sucks for the pts too.
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My MO and BS are part of my team. It's the two of them, my surgeon's PA, charge nurse, and 2 other nurses on their staff. If one of their patients has chemo and radiation, they also have a nurse navigator. So I always see the same people every time I walk in the door. I am so impressed with the level of care I get and I'm so thankful for all of them. I am almost at 2 years and still see both MO and BS every 3-4 months. After I hit two years, my surgeon said he will see me every 6 months and my oncologist will keep me at 3-4 months for at least another year. I get my appointments set up at the end of previous appointments, too.
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I didn't realize until tonight how angry I am.
I was diagnosed with breast cancer last April. My sister was diagnosed with breast cancer about three months later, triple-negative. Her treatment is so much more complicated than mine.
She sent me her schedule for the next few months. She's already had two surgeries and some chemo treatments. More chemo, then a third lumpectomy, then radiation.
I can't even explain what I'm feeling.
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Make sure your docs know about your sister too. They might change how you should be treated now.
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I need to rant!
I've been through the trifecta -- chemo, surgery, radiation, and more chemo. Somewhere along the way, I ended up with heart damage. My oncologist referred me to my cardiologist, who is part of their 'system'. My oncologist's office told me from the start if I ever needed to have my port accessed, to call & then come to THEM to have it done. (Apparently, they don't trust the other people in the system to do it). On Monday, my cardiologist ordered labs, and when I called to schedule a time at the oncology clinic to have it done through my port, I was told they couldn't do it. They were 'too busy' and it was a 'new policy'. I was told I had to have an appointment with the oncologist. She refused to give me one, because I'm not due to see him until April. WTH??!!
I explained the predicament with the scheduler who kept arguing with me about it. I told her I have not had good experiences with the lab techs at the hospital, not to mention that I can only have labs drawn from 1 arm... (not to mention they will NOT access my port for the blood draw). She said, "Well, I've had labs done there, and they never leave me bruised." I responded with, "Have YOU had cancer treatments??!! Do you have anemia? Do you bruise easily? No, I didn't think so!!!" I am LIVID!!!
Why the hell did they make me get the port if they weren't going to let me use it??!!!
I've already filed a complaint at the hospital level. As soon as the clinic opens this morning, I'm going to call and ask for the office manager. If that is unsuccessful, I am going to file a complaint with the chief of staff.
Haven't we as cancer patients been through enough without them causing us more unnecessary pain & suffering? By going to the hospital lab, I will be exposed to not only flu (the hospital is full of flu patients) and other communicable diseases, but also the risk of lymphedema increases every time they put a tourniquet on my arm. The port access lab-draw is the only logical draw site.
Ladies, what are your thoughts?
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bcincolorad, thanks for the suggestion. I have told her already and when I see her next week, I'm going to give her a copy of my sister's genetic blood test results.
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fishingal68, reading about your situation makes me livid. I'm sorry you have to go through this.
Ask them for a written copy of their "policy."
If you don't get a proper response from the higher hospital authorities, tell them you are going to report it to an elected official for action. Don't just say it, do it if you have to. If you have a state medical board where you can send a complaint, tell them you're also going to file a complaint with them. Anything in writing, I'd send it certified, return receipt so you have a proof that they've received it.
Reading this scares me for the future of the medical profession/health insurance in our country.
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Fishing~WHENEVER I have any blood drawn it's always by my infusion nurses. It's gotta be. No way in hell should you be put through that. They just don't freaking get it. That is the DAMN reason we got the port. That makes me infuriated beyond belief when they blow it off because they are too busy. Bullshit. I'm too busy living to come to this place filled with Germs and get poked at over and over! And no way with a lymphatic arm problem! 😡😡😡😡I have it also no one touches my left arm. I'm so sorry. When I (nicely and calmly call and complain. Cry a little. It always works.). One thing Ive learned. Is after the patient leaves the room they turn into chatty Cathy's. If you're labeled a bad complainer. They never call back. Make a good friend in the practice. Then use that connection to help you. That's what I have done. It's helped tremendously. Appeal to their egos. Say I know this is your specialty. Please help me!? Make them feel smart. It works wonders. They eat that shit up. Sometimes you have to play their game to get what you need and want. You must advocate for yourself however you need to. Just be honest. And you. Cant go wrong. I'm so sorry. It really pisses me off. So I do what I need to do! Once a complaint is filed. Most oncologists notice that when your file is in front. Of them. They can elect not to take you on as a patient, that’s why you at least should try to kill them with kindness first. Because then they look like the huge asses they are !!
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I've been having problems with my port use for the last year or so. There seem to be some new rules concerning nurses, etc. ability to access and de-access ports. I've had a Pet scan every 3-4 months for almost 3 years. For the first two, I would go to my onc nurse and have it accessed and a nurse from the infusion center (just because it is closer to the Pet scanner) would de-access it. This system ran smoothly and then something happened. I would get to the Pet scanner tech and they would say they are not supposed to use my port. I would say very authoritatively, you are using my port and they would. The infusion center nurses wouldn't come over to take it out so I would go back to onc nurse. All these locations are in a hospital complex, all very close together. One tech who liked using my port got injured or something and was out for a long time. The other one tried to refuse every time but I always convinced him. I asked my onc nurse, why all the resistance to using ports? She said they have gotten more strict with port use and which nurses are allowed to use them based on training and recent experience. She said she has to fill out a form EVERY MONTH and submit it to some accrediting organization that she has accessed a port and NAME the patient. This is a nurse who accesses ports at least 20 times per day. I don't know if this is a state thing but it might be. Maybe all states are tightening up on port use because they had some problem (like they got sued). Last Pet, I had a fill-in tech and she said she uses ports all the time. Why not?
If you are still reading this mess, there is also the story of my recent two cataract surgeries. At the first one, I had my port accessed by my onc nurse beforehand. The anesthesiologist said he would not use it. He said it would be TOO SMALL in case of an emergency. I had a really good nurse who got an IV started on my non-existent veins. So for the second cataract surgery, I didn't have my port accessed beforehand. THAT anesthesiologist said he would have used it. I requested the same nurse with the same good result. I lucked out but disaster could have ensued.
I'm not getting any IV meds right now. My last IV med was Aug 2014. My port is just for blood draws and scans. I must have it done that way. My onc nurse has NEVER said she was too busy. I do call and set up a time just to be courteous but she said I could come any time.
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I can really sympathize about the issues with accessing the port. My scanning center flat out refuses to use my port even though my MO's staff has offered to access and remove it (they are in different locations but I'm willing to spend the extra time traveling between the two). I have one arm to use and my veins are shot so badly that one time before I had the port installed, 5 different people tried accessing a vein before calling in someone with ultrasound to locate a usable vein. The problem gets worse every time (a tech told me that Herceptin is very hard on veins). What used to be a simple procedure is now fraught with tension and it often takes 15-20 painful minutes just to get a usable vein. I've never had scanxiety or needle phobia but now I've developed intense anxiety over vein access. A few months ago they blew out two separate veins on my arm when I was getting contrast media for a scan and I had a bruise that went from my elbow to my wrist. And this is in a major hospital where there's no excuse for not having the proper equipment and training for accessing a port.
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Thanks ladies for sharing your stories. As cancer patients, we go through enough trauma without having to endure torture to have labs drawn.
The oncology clinic still will not budge from their stance. As a matter of fact, the clinic director called me and we exchanged a very heated debate. She had the audacity to tell me that "we only draw labs on OUR patients." I emphatically told her I was their patient, and the only reason I had to see the cardiologist was because of the treatment I got at the oncology clinic. She was rude and hung up on me.
The hospital system's patient complaint person has called to try to smooth over my feelings, as has my cardiologist's office. I also wrote a letter to the chief of staff at the oncology clinic asking him to reconsider their policy. Although it will not make a difference for me personally (because by the time he gets it, I will have gone to the hospital for labs), perhaps it will make a difference for someone else.
I am still a mess over all of this. I never cry, but this disaster has turned me into a blubbering angry idiot. It shouldn't have to be this hard.
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yeah only the rns in the infusion center are allowed to use the port for labs. So it's iv and needles if I don't schedule an appt at the infusion center at the hospital system i use. Always been accomodating. The reason is they have the most experience over regular rns. Infection is always a risk. Anyone who wants labs sends it to the infusion center. I found out that they need orders to do the heparin flush at the end. So since my mo is not with the group anymore my pcp has orders for a certain number of months at a time for the ic to be able to flush after labs or for when it's the every 3 mo maintenance flush.
That's just nuts. I'd for sure file complaints everywhere you can.
I'd also change mo office. Your mo follows you for awhile after txs. Mine for life. You need an office that treats you right. My mo isn't in the hospital system anymore. She was during my txs. But because she goes to bat for you and cares, i did not go with the new mo at the hospital system.
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Sheezus Cripes! They CAN'T access my veins anymore because they are too weak, roll too much, collapse...you name it.
They HAVE to use my port for scans and infusions, and that's all there is to it. Yes, it's a pain because I have to go upstairs before all of my scans and get the port accessed (the techs in the scan depts. aren't trained to access ports because the nurses have to use special procedures as infection is a big risk, ergo I have to go upstairs every time).
I'd lodge a formal grievance, too. It's not like ports are a "new technology." They've been around for a while, and it shouldn't be a big deal to have it accessed by a trained person. I HATE it when they say they "are too busy." As many times as I've had to have mine accessed, it only takes a couple of minutes for them to put on ;the special gloves, a mask, and to clean the area with alcohol before "stabbing" me.
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HERE'S MY RANT FOR THE MONTH: I have contacted some of these questionable law firms regarding their lawsuits against Johnson & Johnson and Shower to Shower because they feel that talc causes ovarian cancer.
I have spoken to their "receptionists," telling them I know their lawyers probably won't call me back, but that's okay…the call is being recorded, so I hope the boys and girls will at least LISTEN to the recordings.
I think these lawsuit procedures against Johnson & Johnson and Shower to Shower are a bunch of bull crap. First of all, ovarian cancer is NOT a common cancer, like breast cancer where ONE OUT OF 8 WOMEN will get breast cancer in her lifetime – 12.5%; and only ONE OUT OF 78 WOMEN will get ovarian cancer in her lifetime (LESS than 1% - actually it's only ONE TENTH – 1/10 – of 1% who will get it). So, you guys are suing the company for billions of dollars even though there are way more breast cancer patients than ovarian cancer patients out there? Does that seem fair? I have canisters of Gold Bond Powder and Monkey Butt Anti-Friction powder in my bathroom, and the FIRST ingredient on both of these is, you guessed it, TALC! Why aren't you guys suing them, too? Oh, no….we'd much rather sue the people who have the deepest pockets so we attorneys can get the MAXIMUM for our efforts (as you know, most attorneys will get AT LEAST 40% from the settlements, if not more). Yes, J & J has admitted that there is talc in some of their products, and they also use zea mays, or cornstarch, in some of their other products. Based on their prior knowledge, it's probably easier for the corporation to just "roll over" and pay out the settlements rather than fight it. The little blonde who does the talking in the commercials says that J & J "failed to tell the consumers." Oh, come on! All one has to do is read the powder canister to see what the ingredients are! Oops, I forgot…nobody reads anything anymore.
My first question when I call these firms is have any of these women had their DNA tested for genetic mutations? "A" does not always lead to "B." Some mutated genes will predispose a woman to ovarian cancer, and it has absolutely NOTHING to do with talc. Second question: Have any of these women had AUTOPSIES after they've passed to determine if there actually IS TALC in the tissues of their ovaries? No one has gotten back to me, and I seriously doubt that they ever will. I'm sure, as with other cancers, some of the women might have NEVER even used powder, and they STILL got ovarian cancer…it could have been caused by a douching product or something else.
As with lung cancer, some patients NEVER smoked in their lifetimes and weren't exposed to a lot of second-hand smoke and they still got lung cancer! Who do they get to sue? They can't sue R. J. Reynolds because they never smoked their products, and even if they did, these people knew the risks because each pack and carton of cigarettes has a warning on the side of the pack/carton. Incidentally, my father smoked for decades and lived to be 85 – never got cancer, and my oldest brother, who is almost 70, still smokes and he doesn't have cancer. So once again, "A" doesn't always lead to "B."
I always end on this point: So, who do my Stage IV terminal/metastatic breast cancer sisters and I get to sue, especially those of us whose cancers were Dx'd Stage IV De Novo, even after we had our mammograms every year religiously? Do we sue the mammogram machine manufacturers because they could not detect our cancers even after repeated scans year after year? European women drink more than we do, and they have higher breast cancer rates, so that lends credence to the statement that there is "a connection" between alcohol consumption and increased risk of breast cancer. Can we sue Robert Mondavi, Glen Ellen, Sebastiani, or Turley Vineyards? Or is it too late because we already know there is a link between the two?
https://www.worldatlas.com/articles/countries-with-the-highest-incidence-of-breast-cancer-in-the-world.html (Here's the link to support this)
My third question: Did they bring any of these "afflicted" women in and question their application practices or their mutation status? It seems like a "far reach" to me as well because the powder itself has quite a ways to travel: Going up the vaginal canal, through the cervix, climbing up the uterine wall, splitting up between the fallopian tubes and finally entering the ovaries. In order to get that much powder up in there, these women would have to pour a big pile of powder on their palms, spread their legs, and SLAM it up there! Didn't their mothers show them how to apply it the correct way?
I'm getting sick and tired of seeing these commercials on TV day after day, especially when there's more than one law firm trying to reap a "big pay off." I also tell the receptionists that I'm over sixty years old, and I've been using J & J powder all my life. Even as a baby, my mother only used their products on thel five of us kids. After all those years, I didn't get ovarian cancer. Because of my Stage IV status, I have body scans EVERY three months, so if I did have ovarian cancer, don't you think it would have shown up on one of them by now?
As far as I'm concerned, if the prosecuting attorneys DID NOT perform supporting DNA mutation tests and autopsies, there is no direct connection between talc and ovarian cancer.
I always thank the receptionists for taking my call, and being very courteous and polite, letting me talk as long as I need to (and I try not to drag it out too long, just bringing up the concerns listed above).
Dear ladies, if you'd like to join me in bombarding these firms with your concerns and complaints regarding these lawsuits too, please PM me. I don't want to include their names and numbers here in this post out of respect for their privacy.
L
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Love it, Lita! Here’s the lowdown on these firms and their commercials. They really just want your contact information so when they decide they have a big enough group of people that they think likely did suffer an injury of some sort due to whatever product it is they’re targeting they know who to call immediately. The first lawyer group that gets to the court usually gets the most $$$. Most of the ads you see have absolutely 0 evidence of cause and effect. If a scary sounding potential side effect is listed in the prescribing information of a medication that’s what they target. The scarier sounding the better to get your attention. Unfortunately for them most of these do not ever come to fruition. Unfortunately for the thousands and thousands of patients whose need/benefit for the medication outweighs the tiny tiny risk, many will stop taking it without ever letting their dr know putting themselves at risk for a much worse situation. It’s high time someone sues the lawyers for fear mongering that results in causing injury/death to people who bought into their false, unproven propaganda and stopped taking their meds.
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You tell ‘em Lita!!! I HAD ovarian cancer (albeit a weird rare one), live in a torridly hot area and slathered myself n baby powder after baths during the summer for years. I don’t believe the powder had a damn thing to do with it. I just can’t believe they are getting those verdicts with pretty much no scientific correlation. Goes all over me..
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Some of the talc cases are being overturned because they were filed and tried in states that had nothing to do with J & J or other manufacturers, the plaintiffs, or the stores where the products were purchased. Those law firms just try to find venues without payout limits, and then use the "victims" to line their own pockets. I've noticed more and more ads aimed at taking advantage of people who are sick and scared and ripe for plucking by unethical law firms.
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Right on, Lita!! Your description of getting powder up to the ovaries had me in stitches but you are absolutely right.
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I really don't get the disproportionality and inconsistencies of the law world or the psyche of many of those in it.
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Not sure where to post this but watch this amazing video and see if it makes you steamed!
Surviving terminal cancer
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Just walked 30 minutes--1/2 mile--on treadmill. When does the happiness start??!!! I said to myself during walk, "Come on, get happy". Didn't work. Must be defective treadmill!!! LOL.
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lol that does happen ya know! Candy!
And Jaycee. That’s TOTALLY true geeze
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Candy, you obviously need a new treadmill, one with a happy button on the display.
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Yeah Jaycee. Probably so. But those with a happy button are too expensive for me. I have a BASIC treadmill. Lol.
By the way, Jaycee good quote you posted!!!
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Love that saying too. As I broke down and cried during testing this week and was told by nurse---if it was easy, you wouldn't be here.
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Ohmigosh, Jaycee, so much truth regarding chronic illness! I was recently reading yet another article about tests proving that Fibromyalgia is only "all in our heads" to the extent that our brains happen to be located in our heads. Thirty years after my diagnosis, it's amazing that we still are having to prove the legitimacy of an ailment that, in my case, destroyed my career and dreams of escaping a lower middle class existence despite making many sacrifices. I may seem perky and upbeat during the few hours I work each week, but it takes me 2-4 days to recover from 4 hours of work. Although it does little good to speculate, I sometimes wonder if I would have had so many complications and challenges during cancer treatment if I hadn't been battling a physically and mentally daunting health problem for so many years prior to my diagnosis.
Dealing with peripheral neuropathy is yet another fun invisible challenge. People don't realize how tiring it can be to walk when you have to be mindful of each step. Luckily, I don't always feel extremely tentative when walking, but I will go out of my way when tired so I can use a ramped area instead of stepping down a curb. Don't even get me started on the fear associated with stairs that lack a handrail. EEEK!
Candy, sounds like you need to go for the dee-luxe model! 😁
Lyn
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jumpship, are you on exemestane by any chance? I suffered severe dry eye in right eye. My eye doctor was worried we tried everything. I was afraid I might lose my eye sight, my oncologist pulled me off the medicine and it improved drastically in 2 weeks. All better now I stopped hormone therapy after that, I only finished 4 years. I didn't have dry with anastrozole but really bad joint pain.
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Jumpship, I was given a referral to an opthamologist today by my mo - I asked for the referral because of developing cataracts (tamoxifen related?) plus other things with my eyes that don’t feel normal. I have questions relating to zometa, tamoxifen and ai’s, also rosacea. I never thought I’d have to 2nd guess whether an ophthalmologist could explain the pluses and minuses of those treatments/conditions.
Hope you find an ophthalmologist that can help you out
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I met with a new breast reconstruction Dr who basically refused to touch me as she is building a reputation and felt that with radiated skin the success rate is only 70%..I understand but if doctors only want to work with perfect than what’s the point?. I’m back to looking. My biggest rant today though is about my face. I was diagnosed with basal skin cancer in the corner of my eye. MOHS surgery and reconstruction to fix the hole last week and I’m just so angry at how awful this looks and feels. The Dr was supposed to use a flap from behind my ear but used skin from under my eye instead. I can’t get anyone I’m close to to really understand that although I’m thankful that I have a functioning eye I’m not okay with it and the fact that my body proved again that it holds cancer. My DH has been great but even he doesn’t fully get that this is my face...no padded bra or clothing to disguise this ...we have a big family dinner on Saturday and I’m dreading it.
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