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Issues with a top-ranked NCI hospital, Huge Anxiety/Frustration

mumuriri
mumuriri Member Posts: 26

I had my first surgery consult and MO consult this week, and after waiting 2 weeks when the new patient coordinator at the top-ranked NCI I transferred care to, set those up, I find out my imaging is NOT at the NCI. The coordinator claimed to have sent the request form for all imaging, but the imaging center I went to prior to NCI (which has my mammograms + ultrasound that found the cancer) said they only got a request for the biopsy info.

I've asked her twice to request the imaging. I called the imaging center two days ago to check if a request had come in -- no. I emailed her again, explaining my doctors hadn't been able to do any analysis of my case because they don't have my imaging, and can she PLEASE make sure the imaging gets sent. She said she'd re-send it. I call the imaging center today, and no request was received. I finally call her and get her on the phone, and she assures me (early this morning) that she would call today and get it straightened out. Well, it's 4:30pm Friday (she leaves work at 5pm) no follow-up email, and I call the imaging center and there IS STILL NO REQUEST.

After calling the imaging center to see if the fax number is the problem (why on earth did the coordinator not check after 2 weeks went by without receiving imaging???), I found out that there's a specific fax # for orders she's supposed to use - the one on the release form she sent me is the general fax, this number is for orders --- and am waiting for her reply.

My anxiety and frustration is so insanely high right now. I feel like that coordinator totally dropped the ball, and here I am with a ticking time bomb of cancer in my breast waiting to see if my doctors can FINALLY see my imaging before the surgery they want to schedule ~4 weeks from now. Should I just get a CD made and drive (1.5 hrs) to NCI myself next week? The imaging center said it could take 7-10 business days for NCI to receive the imaging.

I thought this NCI was supposed to be one of the top cancer centers in the US, how has my experience been so bad? Coordinator messing up my results, and then didn't fricken bother trying to figure out why she hadn't gotten my imaging for TWO WEEKS UP TO AND INCLUDING the date of my appointments?? This is the same person who told me I didn't need to bring a CD to the appointment because she had taken care of the imaging. I'm so scared/stressed/that this is going to affect my care at NCI (lack of information, etc).

In addition to the new patient coordinator dropping the ball, on Tuesday of this week (now Friday) my surgeon had sent in her PA with pre-surgery paperwork and I mentioned that I had called my imaging center (in between the surgeon and her arrival) and they had not received any request for imaging, and the PA said she would take care of it -- and obviously didn't!

My fear is that the lack of information is going to affect my treatment plan / results at one of the top NCIs in the country. The surgeon and MO said it was IDC stage 1 grade 2 right now based on results and weren't very concerned, but that's ONLY from the biopsy sample and report that they got --- they haven't seen my mammograms or ultrasound to see if there's anything else! So I'm supposed to get a call for surgery scheduled in 4 weeks, and that's been 100% based on the biopsy alone. Is this normal?? Surgeon said she'll look at imaging when it comes in, but it won't be in for who knows how long. The MO told me she didn't even need to see me until after the surgery / sample analysis is done because of my stage. I just feel like I'm the only one worried about my cancer when I'm being treated at one of the top cancer centers in the US, how is that even possible?

Comments

  • kaynotrealname
    kaynotrealname Member Posts: 346
    edited August 2022

    I have nothing to offer beyond I felt the same way at my nationally ranked hospital, too. I will say they did get my imaging results though before I was seen by my oncologist but it wasn't without difficulty and my intervening. They also didn't seem to be nearly as much in a hurry as I thought they should be. It took me 40 days to get my surgery and 13 days of that was because I tested positive on a covid test but despite being asymptomatic they cancelled my surgery. That about sent me over the roof. Anyway they did get it done, the cancer had not traveled to my lymph nodes despite my fear that the delay would cause just that, nor did I even have any LVI. So although I was in a hurry and they didn't appear to be, it seemed they were probably the ones who were correct in my case. For us, our cancer takes top priority but at these hospitals our cancer is one of many they see everyday and the biopsy tells them quite a bit whether a cancer should be seen as advance or quick growing. I was estrogen and progesterone positive and HER2 negative and although not the highest hormonally out there, pretty strongly so. Those cancers you have some time with. So in saying that, I don't know what your biopsy was but if you're hormonally positive know that the chances of it spreading with any small delays is miniscule. Breast cancer just doesn't work that way. Not to say that they don't need to fix their crap and get your imagining. When I had issues with my hospital getting my results sure I had to call, too, but I felt they were doing everything in their power also. That meant a lot. It ended up being my crappy radiologist's fault for the delay and not the hospitals but the stress of it was so needless. In saying that, I feel your pain and I hope it's resolved quickly so you can just move forward with everything.

  • ratherbesailing
    ratherbesailing Member Posts: 117
    edited August 2022

    I can certainly understand your frustration. A few things to keep in mind...

    Although the surgeon and MO have not seen the actual images, they certainly have seen a written report from the radiologist at your imaging center that told them the location of the tumor, and the size - the size is what would have determined you to be stage 1 (along with no nodal involvement.) And DF had to do their own imaging when they did your biopsy - usually they use ultrasound to locate the tumor in order to can sample it.

    As far as your concern about the surgeon and MO needing to see the images, they are relying on the expertise of the radiologist to determine whether there might be something else there, and certainly the radiologist would have put any other suspicious findings in the report. Yes, the surgeon will likely need to see the original images before surgery to confirm the area they will be excising. But they still have time, and it is conceivable they would want to order their own MRI in advance anyway.

    As far as the struggle to get images, radiology images can take a while to get. And it's complicated by the fact that most facilities have separate numbers for requesting images vs. written reports. So it is certainly possible DF staff is dropping the ball, but it could also be the imaging center. I know that when my imaging center found my tumor they sent me out the door with a CD of the images because they knew another doctor, somewhere, would need them. I now always try and get copies of my images right away, it just makes things easier.

    I know it seems odd, but it is normal for MO to not see patients until after surgery. That doesn't mean, though, that your surgeon and MO aren't discussing your case - there's just nothing the MO can do for you until after you've recovered from the surgery, and they have more comprehensive pathology information from the full tumor. Even odder, given what you're saying about stage and grade, it is probably a good thing they don't seem concerned. Physicians can sometimes lose sight of how terrifying this is for us. So they think our prognosis is terrific, but fail to express that to us in a way we can understand when our safe world is falling apart.

    I suspect you're in good hands. But if you have doubts, hospitals have patient advocates who can listen to concerns and address them as needed. I hope you find some relief from your concerns - a cancer diagnosis is tough enough on its own...

  • mumuriri
    mumuriri Member Posts: 26
    edited November 2022

    Hi ratherbesailing, the biopsy was done at the imaging center prior to the highly-ranked NCI. The NCI just requested the biopsy sample to examine it themselves, so the only report that my doctors have seen is the written ones from original imaging center, and the analysis NCI lab did on the biopsy sample they received.

    When I had my meeting with the surgeon, she said that they do not do additional scanning for someone of my stage (stage 1 grade 2 11mm IDC ER+PR+HER2-, no apparently LVI) prior to surgery when I voiced my concern about possible additional cancer or mets. She did say they would go over the imaging once they got it (and was not happy about the fact it wasn't there -- not directed at me).

    Re: their casualness with my diagnosis, I'm sure a lot of it is because they have patients who have much more advanced stages. But it's still cancer that can come back in 1-30+ years to kill me, the risk will never end regardless if it's stage 1 or stage 3 that it could metastasize. So I was upset when the MO said "You don't need to cry or be afraid, you're basically curable" when I know that's not true.

  • jrnj
    jrnj Member Posts: 407
    edited August 2022

    I understand your frustration. I’ve had so many frustrating medical experiences. On the one hand be glad you met your MO. I didn’t have one for a month after my surgery. My BS was lead and I hated her. Regarding imaging what seems weird to me is that they didn’t order their own and sounds like you haven’t had a breast mri. My mri showed more than mammo and US.

  • ratherbesailing
    ratherbesailing Member Posts: 117
    edited August 2022

    Mumuriri, I can understand your frustration at your MO telling you not to worry. And you're correct, anything is possible. But your MO and surgeon have a pretty good idea of what the odds of recurrence are. Like jrnj, I had an MRI prior to surgery, but both of us had much larger tumors than yours. Members on this board can give insight of what we've experienced and what we've learned along the way, but the physicians treating you are the ones with the training and the knowledge of your specific situation to best know how to proceed.

    If your surgeon doesn't have the imaging by the time they operate you should worry. But I am sure they'll have them by then, and they will have a DF radiologist review the imaging - so you'll have a second set of trained eyes looking for anything else. Hang in there - I think may here would say the toughest time is waiting for treatment to begin. Hope you have smooth sailing from here on...

  • sarahnh
    sarahnh Member Posts: 105
    edited August 2022

    Hi mumuriri - I am a patient at Dana Farber, and like you I transferred my care there after imaging and biopsy at my local hospital.

    Dana Farber isn't perfect, but they are pretty organized compared to other hospitals in my experience. For me, the transfer of care was a bit complicated, but once I was "in the system" everything ran much smoother.

    For imaging: My husband literally went to our local hospital, had them burn my imaging onto CD, and brought it with us to DF. DF was efficient at transferring the CD into their own system. There is a public desk for that, and it took only a few minutes. The DF doctors did a careful and thorough job of looking at the imaging, and you can see their re-reading reports on the online Patient Gateway.

    For doctors: For my type of cancer, I needed chemo before surgery. So after my initial appointment, I only saw my MO, and didn't see a surgeon again for a few months. But, I can understand why it would be stressful not to have the MO overseeing things.

    In my experience, DF will book appts right away (chemo, surgery, etc), but if something changes when they read the imaging, or new info comes in, they will switch things around as necessary.

    If it were me, I probably would drive the imaging CD myself. And I live even further than you! But I am OCD about that kind of stuff.

    I hope this helps a little!

    Sarah


  • mumuriri
    mumuriri Member Posts: 26
    edited November 2022

    Thank you all for replying,

    I finally got a call from the NCI today to let me know that their analyses of my original imaging was done and they want me to come in for an MRI and an additional bilateral mammogram. I asked them if that meant my surgeon had gotten the imaging, and they said yes (I don't know why the original imaging center said yesterday that there was still no request for imaging, when the imaging analysis was done by NCI's radiology that same day so they had clearly received imaging --- unless my PCP sent over the relevant files somehow along with her referral?)

    I am per advice given in this thread getting a backup CD of my images for my records in case I need it in the future. Thank you again!

  • quietgirl
    quietgirl Member Posts: 165
    edited August 2022

    so glad they have the original pictures and that they are getting their own as well. Keep up updated as things progress.

  • mumuriri
    mumuriri Member Posts: 26
    edited November 2022

    Well, I just had my additional screening (MRI, bilateral mammogram, bilateral ultrasound) and they recommended at least 1 biopsy (calcifications about 2cm from original diagnoses mass), I'm supposed to get a call once radiologist has time to review all the imaging together whether or not I need more.


    Thing is, they scheduled the biopsy for 2 WEEKS FROM NOW which makes that 1.5 months since I was diagnosed. They had delayed scheduling surgery to get additional scans, and now I have no idea how much more my surgery will be delayed because new biopsy isn't for another 2 weeks. Is this normal ? At this rate my surgery won't happen till 2.5 - 3 months after original diagnosis. That seems like an insanely long time for no treatment? Am I just tired/anxious over nothing or is this a normal timeline? I emailed my surgeon asking politely if there was any ETA for surgery after today's scans, but not sure how soon she'll get back especially with long holiday weekend around the corner.

  • quietgirl
    quietgirl Member Posts: 165
    edited September 2022

    I don’t think it’s the average time line but I think it seems to fall in the range of not seen as a huge problem. When Covid first started there were periods of time when breast cancer surgeries were put on hold (other surgeries also but most of us wouldn’t consider breast surgery as elective). And there are areas where there are still a backlog. When I was diagnosed in January my surgeon said they had finally got back to semi normal (while she didn’t have a backlog others in the cancer center did on the flip side my radiation schedule was all over the place because they were trying to fit everyone in so they could only start someone when someone finished. None of this makes it easier to wait when you are the one waiting.

    I think for many of us we want the cancer out as soon as possible once we have accepted that’s what’s going to happen and at times from our medical teams view it’s one step at a time so they have a clear picture as they can before surgery. It still is a delay for us and delays cause by staffing issues because of Covid add to that.

    I don’t think you are anxious over nothing but I do think that if medical team thought the delay would put you at risk then they would do whatever possible to to schedule you. Again I know it doesn’t help but I think as long as they are keeping you updated and giving you information that lets you know that what they are doing is gathering information to help provide you with the best care

    Thinking of you and hoping things speed up.

  • btwnstars
    btwnstars Member Posts: 81
    edited September 2022

    Unfortunately, for most, breast cancer is not considered an emergency. I had a first biopsy 3/22 and was diagnosed by 3/25. I went on to have 2 more MRI guided biopsies over the next couple weeks, as well as genetic testing, I went for a 2nd opinion too just to verify what I was being told. My surgery was 5/12. so about 2 months later. I was told as long as it was taken care of within 3-6 months that was a good timeline. They didn't really want things to be pushed to 6 months though, but I asked when I was debating what type of surgery about how long it should/shouldn't be.

    That said, it's really frustrating that you've had to deal with the incompetence. I understand that cancer centers have a certain reputation, but have you sought a 2nd opinion elsewhere? Maybe just to see if it feels like a better fit? I was at a smaller hospital, got a 2nd opinion from a NCC, but stayed with my smaller hospital because I really liked my surgeons. Also due to early diagnosis, early staging, you will most likely receive standard care, so as long as there's nothing rare or odd about your cancer where you need a specialist or trial, you can research and be confident with the treatment anywhere.

    I understand your frustration at their casualness...I felt the same way at first. But after researching and learning more and just going through it..as well as seeing others go through it and following people's stories...I really do believe attitude helps. Of course be sad, mad, scared, cry at times, but thinking about beating it and overcoming, just focusing on one part of treatment at a time and getting thru...it helps to not jump to what ifs.

    Also make sure to ask your doctors the questions about timing...remind them of the lack of coordination and how much time is passing and waiting on appointments.

    I hope your biopsy goes well and you get a surgery date soon! Hang in there. In the meantime, be gentle with yourself, do things you enjoy, find out if there is a nurse navigator or complimentary therapies that can help during your waiting period.

  • momwriter
    momwriter Member Posts: 276
    edited September 2022

    I had similar issues at Beth Israel (in Boston) re: Imaging- and I found talking to the social worker assigned to the Breast Center was helpful as far as understanding what was normal and what might be falling through the cracks. She helped me figure out who /when to contact to get what I needed.There was a delay because someone at Beth Israel dropped the ball, and it turns out I needed the MRI they asked for and I ended up with additional suspicious masses (bummer). I opted to not biopsy those because I was getting an MX anyway and I didn't want to delay any longer biopsying if it was all coming out anyway. I did have a second opinion at DF - and they confirmed what my team at BIMDC had decided. My MO is Dr. Wulf and she's awesome. Dr. Burstein was my second opinion. I also asked that I get a full body scan after that MRI because I didn't want any more surprises and wanted to know ahead if there was going to be mets. Well thank God there weren't.

    There was a lot of hurry up and wait. It was about 2 months from my initial dx at my local health center to my surgery and then I had to have a second surgery (ALND) and then finally chemo which didn't start til after Thanksgiving! I think I'd have chemo first now, but that wasn't how they did it back then.

    Well, it's 10 years later and I'm here and thriving. I can't lie that I hate getting a mammo or MRI on my "good" side because I know "there by the grace of God go thee." Or in lay terms, "it's a crap shoot." And I may be back with a recurrence or second primary and I get anxious on those days. But most days I don't worry about it and am in my life. But I'm so grateful for the great care I got at Beth Israel. I truly loved my caregivers. Once you have a treatment plan you can lean into, know that it's a marathon, not a sprint, and work on shoring up the rest of your body which is healthy apart from those small lumps which will be eradicated.

    I know your anxiety and I'm sorry you are going through this, and just know you are not alone and you will get through this.


  • mumuriri
    mumuriri Member Posts: 26
    edited September 2022

    The latest biopsy shows a <5mm cluster of microcalcs that turned out to be DCIS. So another spot of cancer 2cm away from the main mass. I'm supposed to get a call from my surgeon about these biopsy results and hopefully get surgery scheduled (please!). Initially she had been saying clear-cut lumpectomy + rads, but now with a 2nd area of cancer I'm not sure what she'll recommend. Is it unusual to have more than 1 mass/area of cancer in early stage? I'm scared that there may be other smaller spots (undetectable size for mammo) that a lumpectomy won't catch, but will rads?

    My other breast has a "cluster of what everyone here thinks is small benign cysts with some calcs" that they are not biopsying because they are sure it's benign and recommend 1-year followup mammogram. I asked repeatedly if a biopsy would be useful, and they said no because they are so sure it's not cancer.

    At this point I'm concerned about BMX/UMX vs lumpectomy, but if the surgeon's (renowned NCI) recommendation is lumpectomy should I just trust?

  • quietgirl
    quietgirl Member Posts: 165
    edited September 2022

    I had two area of concern not far from each other, both were removed in same lumpectomy (the secondary area was not deemed cancerous during the biopsy but I think due the proximity to the first and to ensure clear margins it was the best choice). And yes the whole purpose of radiation after a lumpectomy is to hopefully put you at the same risk level comparable to having a mastectomy. In the end the choice is yours even if a surgeon recommended a lumpectomy if you feel strongly about a mastectomy that's still your choice. whatever you decide I wish you a quick surgery date and a speedy recovery


  • mumuriri
    mumuriri Member Posts: 26
    edited October 2022

    Well, I had my lumpectomy and sentinel node biopsy. My surgeon was amazing and so was the staff at the hospital. The pathology came back super early with ALMOST the same info as the latest imaging - 1.7cm, grade 2, ER+ PR+ HER- IDC. Clear margins, 2 sentinel nodes removed, no cancer detected in those. BUT where the initial biopsy and re-examination of same sample by DF showed no LVI, now the pathology report for surgery shows LVI (lympho-vascular invasion) is "present, in multiple slides". I was shocked because I don't think it was expected. I know this means chance of recurrence / metastasis is significantly higher, but I'm waiting for my first appointment with new MO in early November (she will have oncotype results and whatever treatment recommendation (radiation or radiation + chemo)). I'm worried this means chemo as well because LVI could mean the cancer has already traveled elsewhere, right? Someone correct me if I'm wrong..

    Thank you for all your support and advice, you are a blessing.

  • windingshores
    windingshores Member Posts: 160
    edited October 2022

    I had LVI and my treatment didn't change. Mastectomy and hormonal meds, no chemo or radiation (low Oncotype). Mine was "focal" and found in lymph vessels. Yours does not sound "focal" but hard to tell. I have read that LVI is often viewed as equivalent to one positive lymph node. Your Oncotype will be helpful.

    Dr. Wulf explained that LVI shows that there are cancer cells able to travel and implant, if you will (I don't remember the language.) Apparently everyone has cancer cells in them. With LVI I pictured dangerous cancer cells coursing through my body but that is not the case!

    Does your report specify blood or lymph vessels?

    Beware of Dr. Google on this topic. My docs weren't that concerned about LVI and I have been fine for 8 years knock on wood.

  • maggie15
    maggie15 Member Posts: 769
    edited October 2022

    LVI (lymph vessels) did not change my planned treatment, lumpectomy and radiation. My Oncotype was an intermediate score which meant no chemo at my age. LVI did not show up on my biopsy either, but that is not surprising since a biopsy is just a small sample of the tumor. All the best going forward.

  • mumuriri
    mumuriri Member Posts: 26
    edited November 2022

    I am really, really questioning if I should maybe have gone somewhere else for my treatment now. I've waited two stressful anxious weeks to find out my oncotype at the new oncologist's first meeting with me, only to open my mail this morning to find out that my insurance company has delayed approval of the oncotype test because they want "additional information".

    I called insurance and they said they had faxed the request for more info LAST WEDNESDAY and still have not gotten any response from the oncologist's team. I don't blame the doctor, but the administrative staff at the hospital should have taken care of this.

    I've been finding that the doctors, nurses, and PAs I've interacted with have been fantastic, but the administrative staff have consistently dropped the ball -- first, not getting my imaging sent over from local imaging center at all for two weeks (I finally got it sent myself), then after assuring my my surgery date wouldn't be pushed back, finding it's a month after the original surgery date. Now, after waiting 2 weeks to find out my oncotype/treatment plan, I find out that they didn't fill out all the info my insurance needed to approve it and haven't responded FOR A WEEK to update their request. I'm just beside myself at this point.

  • alicebastable
    alicebastable Member Posts: 1,934
    edited November 2022

    It's likely that your oncotype sample was sent off and is waiting at the lab, and as soon as the insurance coding is straightened out, yours will be the next one they do - or they may have already done.it and they're just waiting to release the results. I didn't have any insurance glitches on mine, surgery was 7/11/2018, and I didn't get my results until the day before my re-excision scheduled for 8/8. Glad it came in on time - since I had a micromet in the sentinel node, my MO thought I'd need chemo and they were going to put in a port at the same time as the re-excision. But my score was low enough that I didn't need chemo. Anyway, three weeks seems pretty normal, and that was before Covid when there weren't backlogs.

  • maggie15
    maggie15 Member Posts: 769
    edited November 2022

    mumuriri: I sympathize with you but these glitches seem to happen with practically all hospitals and insurance companies. I think it has become worse since COVID because of staffing shortages and turnover. My oncotype was preapproved, reported, and then payment was denied because it was "the same or similar service" to the post-surgical pathology performed by the hospital lab (which, of course, sent the sample.) Next the insurance clawed back the payment for the tumor pathology for the same reason. After multiple phone calls the oncotype was denied for "lack of medical necessity." I filed an appeal which overturned the oncotype denial and a separate appeal for the hospital pathology which was also accepted, so a year after surgery I thought things were sorted out. Out of the blue eight months later the hospital pathology payment was again denied because "we took another look at this claim and saw something that had to change." It was once again paid last week but I am now in the habit of checking hospital billing / insurance websites frequently. I never expected to become phone friends with so many customer service agents.

    I have found that NP/PAs in doctor's offices can sometimes speak to the actual insurance/billing people even though we can't, so I try to go through them if possible. Be polite but persistent: the customer service agents can't do much but they can escalate a problem to a supervisor with more authority. Genomic Health which performs the oncotype is, in my experience, one of the easiest providers to work with if there is a problem. Once I had to go to a patient advocate who threatened to get the state insurance commissioner involved in a dispute over a large hospital bill but that was after all other avenues had been exhausted. Hopefully you can get your preapproval fixed without further aggravation but this happens way too frequently.

  • harley07
    harley07 Member Posts: 248
    edited November 2022

    I’m sorry to hear you are experiencing delays with insurance in addition to dealing with breast cancer. As others have said it’s not uncommon and seems to have increased due to the pandemic. That said, IMO the ‘big’ name cancer centers aren’t always the best option for everyone. If you have a rare type of cancer, need special treatment etc, they can be a godsend. However, they also have overwhelming demand. For a typical’ breast cancer, your local or regional hospital may offer the same level of care and perhaps have better scheduling options. Best of luck to you.