Sep 14, 2021 09:09PM Harley07 wrote:
@Sadie - how frustrating. I'm so sorry that progression seems likely. Thinking of you!
Meet and support others who are affected by these issues around anxiety, depression & other emotional effects.
Posted on: Jul 16, 2015 12:21PM - edited Aug 2, 2017 01:46AM by sas-schatzi
This thread is meant to be for RANTS and RANTING. Then Rant again. We need a place to simply get rid of the anger. Write it here. Unleash it all. Get it out. This isn't meant for the Stupid comments(great thread). This is for the gut wrenching, tell them off anger.
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Sep 14, 2021 09:09PM Harley07 wrote:
@Sadie - how frustrating. I'm so sorry that progression seems likely. Thinking of you!
Sep 14, 2021 10:19PM bcincolorado wrote:
Oh no Sadie! I am so sorry you are dealing with doctors like that. You deserve better care.
Sep 15, 2021 12:47AM MinusTwo wrote:
Sadie - my original, excellent, beloved MO retired after my active treatment - but I was still supposed to be checked every 6 months. Upon first meeting the new MO he said - well Dr. X did all the heavy lifting so I don't need to worry. That was 5 years ago - and believe me - he has never once worried. Not even enough to answer my yearly questions. I'm now in the process of trying to switch institutions to get a different MO. I'm fortunate that I only need yearly surveillance (at this point), but since I've already had one recurrence - I'd really like a doc who cares.
Hope your results aren't as bad as you think.
Sep 15, 2021 03:22PM bcincolorado wrote:
It is so hard when you get a doctor you trust retire. Hope you get good results and like your new MO.
Sep 15, 2021 04:25PM gamzu710 wrote:
It really is a double-edged sword. My breast care center posts results immediately to the portal as soon as the provider completes them. Which sounds good for informational purposes but then I saw my cancer diagnosis several hours before my referring doctor did and managed to call me with next steps. I just got more biopsy results this week that I thought suggested I had a huge area of DCIS in the contralateral breast but then when I finally got to review it with my surgeon, it turned out the report just had weird formatting and the results were actually benign.
There are pitfalls both ways; the difficulty of contacting providers is really a fundamental problem, though! It makes me crazy. I'm actually contemplating switching to a concierge PCP because while I like my PCP, the practice is an overburdened factory and it doesn't help to like your PCP if you can't get past the front desk people. And telling me that the first slot for a pre-op physical is in 3.5 weeks is not OK. Concierge is a bit more money but the peace of mind of actually having a doctor whose bread and butter is being responsive and quick is appealing.
Sep 15, 2021 04:34PM wrenn wrote:
I see my blood work pretty fast after a draw. The next day my NP calls and says "What do you think?" She knows I will have been nalyzing results.
Sep 15, 2021 05:59PM Sadiesservant wrote:
I totally get the double edged sword but the problem is, we're not fools either. It's often pretty clear when there is a problem and, in the absence of information, human nature is for our brains to make crap up. When I was first diagnosed with stage II cancer, my results went astray and then finally my GP's office called to say he wanted to see me. Uh oh... you know that if it was clear he would have just told me over the phone. My regular MO is awesome and will typically shoot me an email when scan results come in to tell me if they are stable. However, if he wants to chat I know there is an issue. The thing that I appreciate is that if we need to chat he makes it a priority and doesn't leave me languishing for days waiting to hear. They are definitely in a "damned if you do, damned if you don't situation". And I know there are folks that will go into panic mode if they see results before their docs - I'm just not one of them. I prefer to be armed with the complete picture before I meet with my MO so I can discuss options from a more educated perspective. And, at a certain point, it's more harmful for me to have to spend days or weeks stewing when I know that things are going sideways.
Wrenn, I can see my blood work within hours of the draw as well. I had to laugh. My MO is fine with it and I've actually drawn his attention to some issues. (i.e. what's up with my hemoglobin?). On the other hand, I made a comment to my GP about loving having the ability to see my blood work. His comment? "I hate it!!" He's old school and struggles with patients having that info before he's had a chance to look at it. And I'm sure he has the best of intentions with regards to "chatting with me about my results". But this is not my first progression... don't need someone to hold my hand... just want the facts! LOL
Sep 15, 2021 08:01PM bcincolorado wrote:
I see my labs as well and DH's as well. We learned all about them even before I had cancer since DH was a transplant patient and they taught us about them so we'd know what we were looking at ourselves. We kind of laugh and now have a kind of a sick medical humor really at this point. Sometimes the doctors are surprised when we are not freaking out about something too since most people do and we have been through so much now it is just one more thing and we know what is going on.
Sep 15, 2021 09:36PM Sunshine99 wrote:
Sadiesservant, are you old enough to remember the TV show Dragnet? Sergeant Joe Friday's line was always, "Just the facts, ma'am". Had to chuckle at your post - yeah, just give me the facts, too!
Sep 15, 2021 11:39PM Sadiesservant wrote:
Oh yeah… I remember Joe..
Sep 16, 2021 05:52AM gb2115 wrote:
I'm on the other side...I have a career that involves explaining lab work to patients. And it's lab work that is often ok for those particular patients and their disease process, but nowhere near normal compared to regular lab parameters. When they get their hands on a lab report, there's a great deal of unnecessary worry until it's explained, because they don't have the particular medical background to correctly decipher what they are looking at. We're ok explaining this over and over again but it does get exhausting. It's honestly easier for them to get a watered down copy of everything with two thumbs up and a "you're good to go." But I understand the desire to be in control of your medical records. This is why I continue to approach these patients with a smile and patience to educate.
Sep 16, 2021 07:35AM Betrayal wrote:
gb2115: I would say it is not only about having control of one's medical records but also permitting the patient to not be subjected to paternalism by their physicians. Being an advocate for one's own health is a necessary asset today when healthcare is run more like a business than a "caring" environment. So I thank you for patiently explaining results to those concerned patients, you are a rarity today.
Sep 16, 2021 09:06AM ctmbsikia wrote:
I think there are still some things that the Docs have to read 1st and then release to patient? Like a pathology report. I don't know, but I would sooner get a phone call first for those sort of things instead of reading it first. My last MRI the BS put a note on my report right before I read it. I was grateful she read it almost as soon as received.
I am a stalker of the portal after any test but I try not to get overly concerned about anything out of range unless the phone rings. If the phone doesn't ring then I breathe a sigh of relief. At present I am in this situation of not getting too anxious waiting for a call from the GI practice to schedule a procedure although they had me do labs and an ultra sound first and the results are posted in my portal since I went to that lab. It's not quite 2 weeks. If they don't contact me, I will surely call in to see what's up next.
Having a mammo in 2 weeks, so grateful it is still the diagnostic so no waiting. Whew
Still learning how to advocate for myself without going overboard. Thanks for all the great info here. I would truly be lost without it.
Sep 16, 2021 09:16AM Sadiesservant wrote:
I would add gb2115 that it is less of a problem if there is a timely response from health care professionals. It’s not appropriate, in my opinion, to have a stage IV cancer patient wait almost three weeks to get the results of a scan. Unfortunately, once you are in this place, you hold your breath after each and every test. And in situations like my present situation, when you know something is amiss, your head goes to all kinds of places. That’s my definition of unnecessary worry. And my original point was that my GP would not have any additional information on treatment plan, etc. - he can’t water down the progression in my liver (I was able to access my scan on the portal yesterday) so making me wait another two days to talk to him over the phone was rather pointless.
My regular MO would have called me as soon as he had the results - he knows better than to leave me hanging! LOL. (He also understands how anxiety inducing it is and would want a treatment plan in place ASAP.
Sep 16, 2021 11:28AM Betrayal wrote:
One issue with timeliness of physician contact is that they are usually booked for about 4 patients per hour (except my MO who books for 45 minutes/visit) and that keeps them from making those necessary calls. Now the insurance companies know that the physician cannot possibly provide quality care in a 15 minute visit but they really don't care if you spend 2 hours waiting for your 15 minute contact.
I did not use the MO that was first recommended because the only day I could see her my commute to her office would be 45 minutes from my work if traffic was cooperative (cross county route). Her rule was if you were 5 minutes late, you would be billed for the visit but she would not see you. Then I asked if she was late in seeing me, what rule applied then? Did I get a free visit? She didn't reply and I asked to talk to the receptionist so I could book with another MO in the practice. Don't care that she was named one of the Best MD's in the Philly area I did not want to be her patient. Best decision I could have made was to ask for another MO because to date she has been the most truthful and patient with me. Both the BS and RO turned out to not be truthful which further heightened my PTSD and trust issues. I would never recommend either to even my worst enemy nor use either again.
Sep 16, 2021 12:12PM bcincolorado wrote:
It s bad when they seem to not value the patient's time as well. Our primary doc is good and they run that office well and never overbook him and we never feel rushed with the doctor when we are there. Can't say we feel that way with most of the specialists though
Sep 16, 2021 02:35PM AliceBastable wrote:
I like how my primary doc schedules appointments - a half hour per patient unless you're new, in which case you get a late afternoon slot and the doctor and lab person stay as late as necessary. I'm sure some appointments like routine check-ins take less time, which gives wiggle room for any complications with other patients. I try to be patient (ha!) with medical scheduling. Two of the surgeries I've had over the years turned from one-hour anticipated OR time to four-hour situations, which threw everything else off for other people's schedules. The same can happen with regular office visits and complications popping up. But the doctors' offices need to extend the same courtesies to patients as they expect.
Sep 16, 2021 04:13PM illimae wrote:
I can’t imagine waiting long for results, that just sucks. Labs are available in minutes vis MyChart but scan results must be viewed and released by the MO or her staff, which only occurs after a visit or phone call and has always been two days or less. After several years now, they give me news as soon as they walk in the room and we do the usual chit chat after. I hate the suspense.
Sep 16, 2021 04:47PM Sadiesservant wrote:
I hear you Illimae. It generally takes a couple of days for my MO to get results from the radiologist. Typically my regular MO will flip me an email as soon as he has the results if the news is good. When it's not, he would arrange an appointment or reach out by email to set up a time for a chat. I always knew something was up if he scheduled a call of course but he was very quick to make sure I didn't have to wait. I can't help but feel that the new guy simply isn't invested as I will only be his patient for a few months.
Sep 16, 2021 08:43PM KIDI919 wrote:
Here is an example of some health care offices. My niece is a PA at a urology office. The other day she saw 54 patients in an 8 hr day! She gets married this weekend and after the HM she is sending out resumes to work elsewhere. My SIL has CLL ... she was scheduled for a bone marrow biopsy on Tues. She/ we were all worked up to get this over with. She went and they decided to "wait" until Nov. All that worry and missed a day of work. My last primary visit I was told since I had an appt for one thing I couldn't bring up something else because dr. had limited time. (that's what the dr said!). I have an appt for a physical next week with them (seeing their PA) so I will see how that goes. My previous primary retired and the office is so different now. I generally use the patient portal for ? , med refills etc and for the most part that has worked well.
Sep 17, 2021 12:33AM AliceBastable wrote:
I've been getting same or next-day results on scans for the last year or so on MyChart. There's even a warning on the first page to not look if you'd rather have your doctor give you the results first.
Sep 17, 2021 04:49AM WC3 wrote:
I hate suspense too. I would much rather have the results posted to MyChart as they come in rather than wait for a phone call or follow up.
Sep 17, 2021 10:12AM sbelizabeth wrote:
At my doctor's office yesterday, an in-office ultrasound diagnostic procedure results were posted to my portal while I was still in the exam room waiting to see the doctor. Yay, patient portal!
I'm a huge fan of portals posting results the minute they're available. Yes, I understand there are patients who freak and suffer anxiety without the opportunity to have a face-to-face conversation and receive unpleasant news in person. I bet they're in the minority. Anyone who has suffered the hell of waiting days (sometimes weeks, apparently) for their physician's office to find the time to call and relay results probably agrees with me--just give me the information. Right now. If it's bad news, I'll have some time to recover from the initial shock and research and formulate questions when we do sit down together.
Sep 17, 2021 11:01AM - edited Sep 17, 2021 11:08AM by ctmbsikia
Well, I called the GI practice today to see what's up. I pressed the procedure scheduling line, I explained to the gal that I was in limbo expecting a call to schedule an endoscopy (since 8-17), yet I was sent for another test which is done. She sees the order and proceeds to tell me that they are totally booked up. How far out I didn't ask because I simply don't want to know! They are asking patients to call back mid to late next week. Um, no. You are supposed to call me. My instinct that it is a very busy practice is obviously correct. You may remember I had a nightmare time getting radiation done at the hospital it was so busy. I suppose if I got through that, I can wait for this as well. I don't like it, but surely there are people in greater need than I. I also know now why this GI doc said to me a month ago to go the ER if I get the food getting stuck issue again. I have not had any issues since, lets hope it stays that way until they call me.
At what point do they just tell you they are too busy to treat you and just go somewhere else?
Sep 17, 2021 11:27AM MountainMia wrote:
ctmb, I have a digestive problem that's come up this summer. I'm working on it, for now at least, with my PCP. She told me she could refer me, but it would be months before the gastroenterology dept could see me. So I don't know if you'd do better going to a different practice. ??
Sep 17, 2021 11:29AM moth wrote:
Are you in a state with increasing covid hospltializations? That's causing back ups throughout the whole system, including outpatient and clinic procedures too.
Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the OddsDx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
Sep 17, 2021 12:01PM ctmbsikia wrote:
Good to know I'm not the only one Mountain. I am also a new patient who had an issue this summer.
I am in PA and we are not near any sort of crisis care as other states with covid. When I had a colonoscopy a few years ago I just had to ask them-- they do a screening about every 45 minutes. It was like an assembly line. They were moving people thru with more than 1 doc. doint them, and all the other staff. It was like a small hospital. They did take very good care of me that day.
Sep 17, 2021 02:23PM bcincolorado wrote:
How can you give care to a patient if you are seeing 54 of them in an hour? That is terrible! I feel for her. I know people do not get into medicine and expect not to be able to spend time with a patient giving them the care they need.
Sep 17, 2021 03:05PM KIDI919 wrote:
bcincolorado: NO! 54 pts in 8 hours. I think that works out to about 7 min per person. My husband goes there and it's a regular production line. She can't wait to leave. Her contract is up in Oct.
sbelizabeth: Love the pic of the columbine!