https://boards.hellobee.com/ Pregnancy, Baby and Parenting blog, by Hellobee en Tue, 14 Apr 2026 16:26:56 +0000 https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823571 Sat, 19 May 2018 22:11:14 +0000 skiierchck99 2823571@https://boards.hellobee.com/ <p>@Mama Bird: Now that I re-read I realize I misspoke - her second opinion was at Sloan Kettering which I think is what you mean by MSK? Yeah, their admin was pretty sucky and I was not impressed. We were getting a second opinion on surgery and I would have been hesitant to do surgery there based on their responsiveness though I guess she liked the doctors (I wasn’t able to go for that one). Th is for your thoughts - she has a slow growing neuroendocrine tumor and things are ok right now but could change at any point. My heart goes out to you all - cancer sucks no matter what type. </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823566 Sat, 19 May 2018 20:59:47 +0000 Mama Bird 2823566@https://boards.hellobee.com/ <p>@ChitownRo: thanks, these are very good points! I've thought about a smaller treatment place many times but I imagine everywhere in NYC is busy... if they just didn't leave her waiting while people who come in after go ahead, that would already make a difference. And about the lab tests - yes, it's possible that she's getting the right treatment and is just in the unlucky group that doesn't respond, but thanks to poor communication we don't know that. It's not just CA-125 testing - it's a bunch of other tests that should have happened but didn't, so she may have spent several months being treated for the wrong cancer. When we went to MSK they ran a broad test for several markers, and the marker for pancreatic cancer also came up. She has a family history of that :sad: we're not sure yet what the marker means, but the original doctor never ran it at all. The hypertension thing - she does have a history of it, but has controlled it well with medication for more than a year. I don't think she's had days with really bad blood pressure since last summer, so pretty sure it was stress-related. Thankfully a cardiologist looked at her in the ER and determined that she's OK and can proceed to doing a biopsy... and she felt much better once she went home and rested.</p> <p>@skiierchck99: I'm glad your mom had a better experience in Boston, and hope she's doing well. We can't travel that far, but I appreciate the recommendation. It's interesting your experience in NYC was also a mess, maybe it's just how things are here. </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823519 Sat, 19 May 2018 08:46:45 +0000 skiierchck99 2823519@https://boards.hellobee.com/ <p>Sorry to hear this is happening. My mom has had a great experience at Dana Farber in Boston if that’s reasonable for travel. Interestingly she had a second opinion at Mount Sinai and there she experienced much more of the disorganization you reference though she was ultimately happy with the doctors (just not the administration).</p> <p>Best of luck to you - so sorry this is compounding a difficult situation. </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823517 Sat, 19 May 2018 07:59:27 +0000 ChitownRo 2823517@https://boards.hellobee.com/ <p>I’m sorry you guys are going through this. It sounds like you are going to a very busy treatment center re: wait times. I know that ours always runs at least an hour behind - bc people are desperate and trying to get last minute/double booked appointments. It’s hard to say no you have to wait 2+ weeks if you are newly diagnosed w cancer.<br /> Perhaps if you went to a satellite (smaller) treatment center it would be better? Like sometimes our patients will come to our main campus for scans every 3 months and then have an oncologist/treatment center closer to home. </p> <p>Re lab tests. I’m guessing you are talking about ca125 and tumor markers. Many oncologists actually only draw those every 2-3 months - especially because you need to give the chemo time to work before evaluating effectiveness. Unfortunately, disease growth doesn’t mean that she was given the wrong chemo per se, but that despite the standards/statistics, she falls into the group without a favorable response. I would say that for my newly diagnosed colon cancer patients, using standard chemo helps shrink/halt (not cure) 70% of the patients, but there are still 30% that grow anyway.<br /> Also, sadly hypertension can really be an emergency- can cause stroke, heart attacks etc. Does she regularly check it at home? If so, if those values are normal the care team should take that into account.<br /> Finally, in general, but especially when patients are older, I think it’s always helpful to have the palliative care team involved alongside the oncology team. They can help with symptom management and just talking through the emotional aspects of cancer.<br /> I hope things get better for you all soon </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823462 Fri, 18 May 2018 14:38:14 +0000 Mama Bird 2823462@https://boards.hellobee.com/ <p>@Chuckles: I'm glad to hear it isn't like this everywhere. Sorry your family is going through this too, and my best wishes for your dad's recovery! </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823459 Fri, 18 May 2018 12:40:56 +0000 Chuckles 2823459@https://boards.hellobee.com/ <p>I'm so sorry your family and MIL are going through this. I just wanted to send support. I hope you're able to get in touch with a patient advocate. The level of care you're being given is totally unacceptable. My dad is a patient at Northwestern's cancer center and also in a clinical trial at MD Anderson in Houston, and all his doctors are able to coordinate care across states. </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823416 Fri, 18 May 2018 09:16:33 +0000 LBee 2823416@https://boards.hellobee.com/ <p>@Mama Bird: I'll wall you. </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823415 Fri, 18 May 2018 09:15:26 +0000 Mama Bird 2823415@https://boards.hellobee.com/ <p>@Mrs. Pickle: thank you for the info! Travel to MD is out, but I think NYC should be pretty good too, if we can only deal with the patient care thing. I'm glad that you are happy with the hospital though, it makes such a difference...</p> <p>@LBee: no, I didn't mention, but they think it's ovarian, except there's no primary tumor so who knows. When we got to MSK they brought up the possibility of pancreatic based on markers - though again, no tumor that shows up on a scan. This is also frustrating - months of treatment, and there's been no biopsy and we don't have a real diagnosis. The original doctor claimed a biopsy is "impossible" (???) - the MSK team thankfully didn't think so, but yesterday's appointment has derailed everything. It was supposed to be a very short meeting with a gerontologist of all people, basically a formality. DH called and called his office all week to get a time confirmed. Yesterday he must have called like five times. It's all so ridiculous. </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823394 Fri, 18 May 2018 08:10:17 +0000 LBee 2823394@https://boards.hellobee.com/ <p>@Mama Bird: Hi! You say you were referred by an OB... do you mind me asking what kind of cancer? You might have said in the post and I missed it. </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823390 Fri, 18 May 2018 08:04:11 +0000 Mrs. Pickle 2823390@https://boards.hellobee.com/ <p>@Mama Bird: :( I asked because I am a patient at MD Anderson and the level of care is phenomenal. You can self refer. It sounds like the trip would be hard on her though. I would definitely assume you could get great care in NYC. </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823383 Fri, 18 May 2018 07:48:43 +0000 Mama Bird 2823383@https://boards.hellobee.com/ <p>@MrsBucky: thanks! We do have options, but only so much energy (on MIL's part) to go to different doctors and explore. I've considered bringing this up with her current doctor and treatment center, but the doctor of course knows how they're screwing up, and the center... given the communications issues, I'm pretty sure any complaints wouldn't make it past someone's desk and wouldn't result in better patient care.</p> <p>@peaches1038: I don't think there was ever a team meeting. We made the mistake of going to a doctor her gyn recommended, but while he's affiliated with the hospital where she's treated, it doesn't seem like they work very closely. He also doesn't seem to care a whole lot, or he would have figured out weeks ago we're on the wrong treatment path. The second place we went is a hospital with a great reputation, and it's really night and day how much better the communication is. But then yesterday's appointment happened (it's her third visit there for preliminary assessments) and we're feeling very discouraged. It's very hard to ask a loved one to go through long exhausting appointments when there's a possibility that they will just waste their time and go through totally unnecessary stress because someone on the doctor's end doesn't realize they're already sick and elderly and can't handle BS like this.</p> <p>@gotkimchi: definitely trying to get in touch with a patient advocate. I can't even imagine how overworked they are :bummed: but maybe they can help. It's definitely the runaround she's getting that makes her want to stop treatment. Last time I saw her, she begged me to figure out some way to "stop all these doctors playing around with her," and I've never seen her so broken and hopeless. And I didn't know what to tell her...</p> <p>@Mrs. Pickle: we're in NYC. You'd think it's not a health care desert, but here we are... she's gone to MSK for the second opinion, and the commute is hard but not impossible... IF they give her time to arrange transportation and make sure someone can come with her :bummed: </p> <p>@reverie: that's a good idea! The second hospital we went works like that, and it does make a difference. I just hope it's enough difference, but after yesterday I don't know if she'll want to take her chances with them. </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823330 Thu, 17 May 2018 20:47:43 +0000 reverie 2823330@https://boards.hellobee.com/ <p>wow. that is awful. I would look for an integrated health system where her primary MD could be in the same health system as the oncology team. IE my kids got to CHOP pediatrics so whenever I need a specialist I stick to CHOP health system and they have access to all her records / it's one chart. If you live in an area with a larger health system I would try to get in there. </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823317 Thu, 17 May 2018 19:23:49 +0000 Mrs. Pickle 2823317@https://boards.hellobee.com/ <p>Where do you live? Is travel an option? </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823316 Thu, 17 May 2018 19:12:41 +0000 gotkimchi 2823316@https://boards.hellobee.com/ <p>I’m so sorry you’re dealing with this. I would ask for a social worker at the hospital or clinic to meet with you or a pt care advocate. I also want to say that if she doesn’t want to pursue treatment that is a valid option as well. But that should be an informed choice she makes and not because she feels like she can’t access care. </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823305 Thu, 17 May 2018 18:21:19 +0000 peaches1038 2823305@https://boards.hellobee.com/ <p>That is unacceptable. I work in a hospital as part of a multi-disciplinary cancer team and I can safely say that’s would never happen here. When she was first diagnosed and they were determining a treatment plan, did all the providers meet to discuss her case as a team? That’s what they do here and then they all sit down with the patient and family together so everyone is on the same page. Communication is critical for cancer care, as you’ve already seen, mistakes are easily made. I would be looking for a new facility that emphasizes multi-disciplinary care. If that’s not an option, I would be contacting the managers of the clinics to discuss the issues she is having and what their plan is moving forward. That’s awful and I’m sorry she’s dealing with this when she’s going through a very stressful and emotional time. </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823303 Thu, 17 May 2018 17:59:08 +0000 MrsBucky 2823303@https://boards.hellobee.com/ <p>I have no experience or advice but just wanted to say I’m so sorry you and your family are dealing with this. How much control you have is largely dependent on whether there are options for doctors or treatment centers. If you have alternative options (besides the one possible doctor you have tried) I’d call the office manager of the treatment center and express your concerns and see if they have any suggestions/ ideas or what their reaction is. Have you spoken to the doctors staff about your issues wth the treatment center and whether they have any ideas or alternatives? I’m really sorry it’s been so awful. I’ve been thinking about this a lot since I’m at the doctor so often for this pregnancy. I’ve made a point to tell the office staff how gray I am for their friendly demeanor and helpfulness because I’m so painfully aware that oftentimes that isn’t the case. </p> https://boards.hellobee.com/topic/cancer-care-need-advice#post-2823298 Thu, 17 May 2018 17:10:00 +0000 Mama Bird 2823298@https://boards.hellobee.com/ <p>MIL has been dealing with cancer for several months. It doesn't look great and the treatment isn't working that well, but right now this is only 50% of her problem. If anyone's had the misfortune to deal with this - any advice on being treated decently by medical professionals???</p> <p>Here's what she's run into so far:<br /> - the doctor and the treatment center don't seem to communicate. The center staff misses important tests ordered by the doctor, then basically says "oops!" This is partly why we wasted three months on chemo that doesn't seem to have worked.<br /> - when she comes to the center for treatment or a procedure, she'll come in on time and no matter what, be taken in last and leave last. Part of me wonders if someone's doing it on purpose, cause it can't be a coincidence every time. She's in her 80s, already not feeling great between her age and cancer, and they just keep her chilling in the waiting room. Some of the procedures are fasting. She's diabetic.<br /> - of course, she eventually decided to go for a second opinion and possibly switch doctors. OMG, even worse. She was supposed to have a consultation today before a biopsy. The office handling that wouldn't tell her until the very last minute what time the appointment is set. Last night they called and asked her to show up *9:30 am* or all the procedures that follow are cancelled, because they depend on this consult. She's not young enough or well enough at this point to just hop on a train. It's a miracle she was able to arrange transportation at the last minute. Well, she comes in, the doc takes one look at her, cancels the consult and... sends her to the ER because she has really high blood pressure. Duh. She has really high blood pressure because his office kept her on edge all day yesterday. She was so stressed she was up half the night. Now the consult is cancelled, the procedures afterwards presumably aren't happening, and all that happened was that a sick elderly woman got dragged across town twice for nothing, and is spending the night at the ER.</p> <p>She's sick of this mess, exhausted, and thisclose to giving up and just stopping treatment. It's not even like she's doing this alone. Her sons come with her to every appointment and try to advocate for her, but the system is too big and it doesn't care if one old lady lives or not.</p> <p>Are we missing something? Is there any way to go through treatment while being treated like a human being? Any tips or tricks? </p>