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

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...

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.

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

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

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.

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.

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

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.

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.