Second Breast Cancer - Stressed

PatTheArtist

In Feb. 2018 I was told to come back in 6 months for another mammogram/Ultrasound because there was a suspicious finding, but did not indicate a need for an MRI or biopsy.

On August 3, 2108 I went back for that 6 month second look. An asymmetrical tissue was noted on 3D mammogram (the one from before) so an UltraSound was done to get a better look. While doing the ultrasound the tech ran over an area that caused an electrical sensation. A small shadow was found. The radiologist decided to biopsy both areas.

The biopsies were performed on September 4, 2108. I was told a lot of people were on vacation so they could not get me in sooner.

On September 5 a preliminary report was sent to my oncologist. This is a new oncologist to me, my previous one retired and this person took over. The radiologist told me to call the oncologist office the next day to give them a heads up that the report would be coming in. I called the oncologists office as directed and was told by the nurse they received the report and was surprised he didn't call me with the results stating "I told him he needed to let you know." Well, the next day I didn't hear from him, left 2 messages. The third day I called first thing in the morning, left a message. My phone rang from his office and then someone hung up. I called back and they put me through to him. He was unprepared, shuffling papers, says it was benign then says "oh, you had 2 biopsies, yeah, the second one is cancer." He said he would get me in with a surgeon, that I did not need to keep my Sept. 20 appointment (set up a year ago before my previous oncologist retired), and he would turn me over to the breast cancer center at the hospital who will "take over everything from here."

He did call the surgeon who saw me. Given my history a BMX with reconstruction was the plan of action. He cancelled my appointment with him on Sept. 20. He never did get me in with this breast cancer center, which does not even seem to exist. Oh, and he told the surgeon I was "burning up his phones to get the path report" and the surgeon "better get in with her fast as she (meaning me) has no patience." The surgeon told me and my husband what he said.

Next was to get a Plastic Surgeon. That proved to be a royal pain. Choose one from the surgeon's list of 5, make sure they take my insurance, then call the surgeon with the one I want and they will send over my records, the PS office will then call me to make an appointment. I did this right away. Waited 3 days. Did not hear from PS office. I call the PS office and they do not have my records. All is done electronically. Call the BS office again, they did not send the records (forgot to do it) so they had to be reminded. They sent the records and the PS has only one appt. available 3 weeks away. I asked about openings for surgery date...was told only 1 available on Oct. 9, could pencil me in but not guarantee anything. Rest of the year he is booked up.

Called BS office, let them know I made the appt. with the PS, but want them to send over my records to another PS I chose from their list. Told them I cam concerned about their availability and would like to consult with another PS and will choose which one after I see each of them. Said they would....but they never sent over the records, not after 2 reminder phone calls. Never sent over to the second PS.

Genetic testing was ordered. They dropped the ball on that one. I had to call to get it rolling. After pestering them about it, they did it 2 weeks later.

Went to see the PS. He seems nice. Explains things well. Says he will take over all of my post-op care and that I will be going home the DAY of surgery. No overnight. They have to get a surgery date and will call the BS office and get back with me on the date. That was Sept. 27, 2018.

No word from anyone (BS or PS). I am ready to give up and find other doctors. My husband says to hang in there. On Oct. 11 we still have not heard anything. My husband calls. He leaves a message at the BS, but is able to speak with the PS nurse. She says "didn't you get the paperwork?" My husband says no. She then says "oh, wait, here it is, we never sent it...surgery is Oct. 23." The PS nurse then calls me and tells me I have to be at their office at 9:30am on Oct. 22 to get the marks done, will by a dye that will stain my bra, clothes, sheets, and towels (after shower) so wear stuff I don't care about. I tell her 9:30am does not work for me and she says "this is the only time available, you have to come in at this time or we don't do the surgery."

The BS office does not return my husband's phone call. So, on October 12 he goes to their office. They tell him they just got the surgery date a couple of days ago. He tells them no one let us know. He asks what we need to do before the surgery. She says she will email it all over to me by the end of the day. The end of the day comes and I get no email. So, on Oct. 15 my husband calls again and asks where the email is. They send it to me a half hour later. It says "you will have an injection at nuc @3pm on 10/22. You are to report to...." Then it says "you will need to make your own arrangements at PAT the day before surgery." It goes on to give me the phone number. Very cold.

I have had a really bad feeling all along about this "team." I did something really big. I cancelled my surgery. Before I did that I called the Moffitt Cancer Center and was able to get an appointment for next week. They have everything under one roof, no running around.

After this experience I am stressed. I do feel better going to Moffitt. I don't know if the cancer has spread or gotten bigger with all of this time. I will have to travel 2 hours to get to Moffitt, but they have great reviews and are a top cancer center in the USA.

Having breast cancer the second time has been so stressful.

hapa

Moffitt is an excellent choice. I have no idea how any medical practice like the one you describe can stay in business in America. The great thing about a cancer center is that once you get the ball rolling, it just keeps rolling and there's a lot less effort on your part. If your tumor is grade 1, it is slow growing so probably you will be fine, but you'll get the appropriate scans and such at Moffitt.

Good luck! I hope things are smooth sailing for you from here on out.

NotVeryBrave

Wow! Sometimes it really seems like they don't even want the business!

I'm so sorry about your new diagnosis. We all worry about recurrence. Good for you to see these obstacles and say no! I think you will be well taken care of at Moffitt. And that sense of relief that you get from it will be well worth it.

PatTheArtist

Thank you both! So glad to hear good things about Moffitt!! My research says they are good...nice to know people here think so too!!

KBeee

Good for you for not putting up with that. You did the best thing you possibly could. The previous care team (using the term loosely here) did not have your best interests in mind, and would have been a nightmare for years of routine appointments to come. Hoping things go smoothly at Moffitt (I've heard good things about them) and that all gets scheduled soon.

Do follow up with a letter to all previous involved organizations. The leadership of those places need to know what a mess it is. They would not tolerate that care for their family members...no one should have to put up with that.

PatTheArtist

I had my appointment at Moffitt yesterday and things went very well. I was told the reconstruction the original PS was going to do would not work on my, I had 33 rounds of radiation on my left breast and I am not a candidate for the tissue expander reconstruction they were going to do on me. Dodged a bullet!!!

The doctor at Moffitt said I could do a lumpectomy with radiation, possible chemo (will know after surgery). He said he would not advise me to play the "mastectomy card" yet, I may have to in the future, but the survival rate for the lumpectomy and radiation would be the same as mastectomy and radiation.

So, next week I will have an MRI then the MO, RO, and BS will decide which radiation I need (length of time, or a one and done deal during surgery) and when the surgery will be.

Feeling so much better and so glad I got away from that other team.

buttonsmachine

Pat, I'm glad you went to Moffitt. Long story, but I had a similar situation to yours in the sense that my original care team was, well - not great. I felt like I had to keep track of my doctors, and fill them in on what the other doctors were doing. It was exhausting and stressful.

I have since transferred to an NCI designated center and it's been SO much better. There is no substitute for truly coordinated care. I only wish I had gone sooner. Best wishes to you going forward.

KBeee

Glad you have a better care team. Kudos to you for being such a strong advocate for yourself.