Need help - are these issues with my treatment facility normal?

oddboood

I was recently diagnosed with grade 3 TNBC - per new MRI results, it's now 2cm (was 1.6 on first US, then 1.9, now 2.0) I keep running into problems at the cancer center where I'm seeking treatment, and I want to know from others if what I'm experiencing is normal or if it these are unusual problems that I might avoid at a different center. It's a lot of little things that are piling up and making this already difficult process more stressful.

For example, I've only had one appointment with a provider - my surgeon - and that was just 30 minutes. She told me she was ordering some additional tests, and the patient navigator gave me numbers to call to schedule them. It turns out the numbers were wrong - no big deal - it took some calls, but I tracked down the right numbers. However, then it turned out that I could not schedule the tests until my surgeon put in orders. Somehow that step had been missed, and it took me a few days and several phone calls to get it straightened out.

Then there was an issue with the images from my previous mammogram and ultrasound. I gave the office a CD with the images and they assured me they downloaded them into my file. But after my MRI results came in this week, the radiologist put in a note saying that there were no mammogram or ultrasound images for comparison, so they could not be sure if what they were seeing was a satellite tumor or not. I got a call from the surgeon's office asking who in the office I gave the CD to. That was weird.

Also, I've asked my surgeon's office for a phone appointment or in-person appointment with the breast surgeon to discuss the MRI results and the implication of the possible satellite tumor. I have a lumpectomy scheduled on Sept 9, but the MRI report seems to indicate that a mastectomy might be advisable because of the 2nd tumor. However, I still have not heard back from the surgeons office about when/if I might get a chance to talk to the surgeon.

Does all this sound reasonable? If so, I'll muddle through. But if this is atypical, I'm thinking it might make sense to see if I can get care somewhere else. Thanks in advance for any insights you all might have!

ElaineTherese

Your surgeon's office seems to be dropping the ball quite a bit here. I never had such problems but my breast care center did all the calling and appointment making for me. Are there other options close by?

One other thought: In the US at least, triple negatives often do chemo before surgery. Has no one talked to you about that option? Of course, many triple negatives do surgery first as well. It's just that since chemo is the primary form of systemic treatment for triple negatives, oncologists can see if chemo worked on your cancer if you do it prior to surgery. ((Hugs)) I hope your treatment goes more smoothly in the future.

oddboood

Thank you, ElaineTherese! I really appreciate your input. I'm just so frustrated because I have so many medical questions and no one to ask. I'm thinking of going for a second opinion at Dana-Farber - even if I don't move there for treatment, I'll at least get to talk to a surgeon and a medical oncologist for an hour each! Hugs to you too.

Beaverntx

Oddblood, second opinions can be very helpful and in your situation could help provide peace of mind. Go with your inclination!

ElaineTherese

oddbloood,

My next-door neighbor just did a second opinion with MD Anderson in Houston. (We live in OK.) She did it via telemedicine, which was awesome because Houston is nine hours away from here. Her case is complex (two different kinds of breast cancer, pre-existing heart condition, BRACA2+). It was good for her to have someone look at her records with a fresh pair of eyes.

As for your tumor being bigger on the MRI than on ultrasound, that happened to me, too. The only way you'll know its true size is from the surgical pathology. Of course, if you do chemo first (as I did), you may never know its true size....

LivinLife

I would not be comfortable with all of that at all. I'd be checking into a 2nd opinion.... You deserve better!!!

ShetlandPony

In your situation I would definitely gather all my records and *hand carry* them to a second opinion at a good cancer center. Don't count on this disorganized office sending them to your second-opinion place! In my ten year's experience there are sometimes glitches that require the patient to make phone calls and keep things rolling, but this place sounds badly run.

Trishyla

Please get a second opinion, oddbood. The place you're going to doesn't seem to know what the heck they're doing. As soon as your pathology came back as triple negative, they should have scheduled you an appointment with an oncologist. That's who should be directing your care at this point, not a surgeon.

Triple negatives is very different from other kinds of breast cancer. It is aggressive and fast growing. It needs treatment now, and neoadjuvant chemo is THE standard of care for triple negative.

Call Dana Farber first thing Monday morning and make an appointment. They are a top cancer center and will help get things rolling for you.

Good luck!

Trish

oddboood

Thank you, Trish! I really appreciate it. I have scheduled a consult at Dana Farber for Sept 1 - that was the earliest date I could get. The odd thing is that I'm now at Johns Hopkins - you would think they would be a bit better organised, huh? I also expected to at least discuss chemo first, but my surgeon told me that their protocol for stage 1 TNBC was always surgery first. Since my tumor is right on the cusp of 2cm, I asked about whether it would make sense to talk to the medical oncologist. The surgeon said that a millimetre here or there really doesn't make any difference.

The most annoying thing is that I have not talked to anyone since my breast MRI (results came in on Wednesday), and an earlier message I sent to the surgeon via MyChart has gone unanswered for 6 days now. I'm guessing this is not the norm?

Melbo

oddbood aren't you in MD? I'm being treated at Anne Arundel medical center in Annapolis and I have had very few issues with my care and I have never had any questions about my next steps or who to call or where I need to be. I have also never had horribly long waits for appointments or been left hanging for hours in a waiting room.

The one time I did have issues getting into an appointment for a scary situation (blood clot in my jugular) it was still dealt with within a few hours, and multiple people asked me what went wrong with me getting an emergent appointment so they could address the situation. (The original girl making appointments didn't understand that DVT in the order meant ASAP and then the MO office appointment person thought I was overreacting/being hysterical and wouldn't get a doctor on the phone with me. I should have called the nurse line…)

That being said — my MO is not a breast cancer specialist and I will be on my third MO by October. I really liked both of my MOs, but the center's entire MO team turned over in Oct 2020 due to a contract dispute and the guy who replaced my original MO is leaving this October, but I don't know why. If I was facing a complicated cancer situation or had a more unique diagnosis, I would consider moving to a center that specialized in breast cancer — or at the very least an MO whospecialized who could work through Anne Arundel.

PM me if you have other questions

gamzu710

Are you at the main Hopkins campus? It looks like we have the exact same diagnosis date. My care is being managed through their affiliates in the DC area and I have not had the experiences you are having; my nurse navigator has helped me make appointments by making calls herself, referrals go in immediately, and when imaging reports have popped up in MyChart my surgeon's office has called me within 24 hours to review and answer questions and tell me the next step. My breast MRI results came in Wednesday, same as yours, and I got a call Thursday morning to discuss. I'm under no illusions that it will always be this smooth but so far no complaints.

Anybody would be frustrated and upset by what you have experienced! I'm glad to hear you're seeking a second opinion. Especially with a triple negative diagnosis, nobody should be leaving you dangling for any reason.

oddboood

A huge hug and massive thank you to all your wonderful, wonderful women! I can't tell you how much your responses have helped me. I am pretty certain I will be moving to Boston. As luck would have it, the first available appointment at Dana Farber happened to be with a medical oncologist who specialises in TNBC and a surgeon who specialises in nipple preservation reconstruction. Also, Dana Farber has clinical trial for neoadjuvant chemo in early stage TNBC that is now enrolling and I meet all the criteria to enroll. I've even located a lovely and affordable sub-let that is a short drive from the cancer center, and the owner is willing to hold it for me. The universe certainly seems to be leading me to Boston.

XOXO,

Aleta

Trishyla

Great news, Aleta. It sounds as if you'll soon be getting the care you deserve. And kudos for looking into a clinical trial. All of us benefit from those who care enough to further research into this horrible disease.

Good luck. I hope everything drops into place for you.

Trish

K-Gobby

What wonderful news oddblood. The universe gave you the workable plan as you did some footwork. Some do not get 2nd opinions, but your first visit had dropped balls. At the City of Hope in Duarte, They have a patient portal where i see all visits have been planned and everything I have done is listed, will do and blood and test results fairly quickly posted. I only had the form i needed them to fill out saying i needed to work from home that went missing. Seems my person sent it to the right department, but that person was gone over a week on illness. I finally located the form and my Doctors RN got it to my work. Bing, bang boom. Cancer is their focus and treatment and cure are their goals. Strict protocols in all rooms and followed every time. All it takes is one person to drop the ball and you are the one home with worry.

I took the opportunity for a gene study with my blood. Went in for breast cancer in no lymph nodes yet, but now have a BRCA-2 gene and would never have known without that volunteering of my blood for the research. Your study will do the same for you. Iy is built for you and what you have. Keep us informed!!!!! Enjoy Boston in the best ways you can!

reflect

So glad you are getting a second opinion. I got a second at DF and the care there was superb. They also were able to save my breast which had multiple tumors. I am very grateful for the care I received there and I hope your experience is just as good. Best of luck.

oddboood

So I went to Dana Farber for a 2nd opinion and fell in love. That is one extremely well-run program. I'm going to start chemo there next week on Wednesday. They will have me on weekly carboplatin and taxol for 24 weeks, with 12 weeks of Keyturda overlapping. This after my surgeon at JH told me that immunotherapy does not work for TNBC. Things that make you go hmmm.

Thank you everyone for your support and encouragement. I am thrilled to be moving to a treatment center where the care is patient-focused. They schedule my appointments for me - and call me to make sure everything is okay! I'm in heaven.

Cheers,

Aleta

SimoneRC

Aleta,

Soooo happy for you! Sending best and most positive vibes your way!

OnTarget

Hi Oddblood,

I'm so glad you are happy with your Dana Farber team!

I was at Hopkins and had a totally different experience. My BS was amazingly organized and responsive, and I asked for a pre-op MO consult and got it.

My tests were scheduled very quickly, and I was happy with the overall system.

I did get a 2nd opinion for Chemo at MSK, and I'm glad I did.

Generally, Hopkins has been good, but the negative is that I've needed to be on top of everything to make sure the right things have happened on time.

And weird about what they said about Chemo for you. A friend with TNBC did her second opinion at Hopkins, and they recommended chemo first.

I love how you are taking charge of your treatment!!