Newly diagnosed & frustrated

CBJMel17

so, I’m new here. Hi.
I’m 37, I was diagnosed on January 26th by reading my own pathology report, the lab emailed me the results before the Dr called. I was diagnosed with IDC, ER+/PR+ both at 100% HER2- and grade 3 on the left side.

I met with a surgical oncologist within the same hospital system, but is technically An outside surgery team that contracts with the hospital. The Dr was great at explaining everything & I was scheduled to have a bilateral mastectomy on 2/28. There’sa strong family history of breast cancer in my family and I had questionable calcifications in the right, according to one pathologist, but the other one didn’t agree, which has me concerned. I have been reading up on here about the DIEP vs implants for reconstruction and with my active lifestyle and working out the DIEP seemed to fit me better, but according to that Dr it was only available clear across the state at Vandy (TN). So, I did some research and come to find out that the UT Hospital does it as well, so I requested them to fax me stuff to that Dr because I wanted a 2nd plastics opinion that might open up more options for me. At 1st the MA tried to strong arm me into choosing this other Dr, but I did my ground on the PS Dr I researched and knowing the other PS didn’t do the DIEP, not others here according to my surgical oncologist. They called me back about 5 min later and told me it I wanted that 2nd opinion that I could no longer see my surgical oncologist and my surgery would be canceled. I felt like everything imploded again. I decided to stick to what I wanted because it’s my body & not I have to start all over, minus the testing, to get anywhere again. So here’s to another 2 weeks of waiting for them to review everything and get back to me with a visit date/time off when I’ll be scheduled. They need time to get all of my records sent to them and review it with their team. So very frustrating, but I feel I made the right decision for me, and I don’t do well with feeling like I’m being backed into a corner. I’m already mad enough because I’m having to deal with this right now as it is.

Rah2464

CBJ these are huge decisions so you are wise to make sure you are confident about the surgical path (and team) you have. No group should be offended if you want a second opinion. I can see the potential need to not hold your surgical slot, but to discontinue communication altogether well that is a red flag in terms of professionalism in my book.

Do you have a current MO? Is it possible to begin anti hormonal treatment while you sort out surgical options? I do believe this became more common during the pandemic as surgeries were often delayed. Wishing you all the best and I hope you find a way to have the surgery you want.

wondering44

CBJMel17

Did I read your post right that your Team mentioned they would not do your care if you went for a second opinion?

You can choose any doctor or get as many 2nd opinions as you want to make sure you are getting the care that is best for you. PM me if you want info. on how to handle that differently other than saying okay I will go elsewhere or decline a second opinion to get care. As Rah2464 said, that's a red flag for a Team. I second Rah's opinion.

RatherBeSailing

Wow, sounds so frustrating, and so sorry you're going through all this.

I second what others have said about second opinion. And would point out that you can schedule a consult with the plastic surgeon you're interested in without necessarily forwarding your records. They pretty much know what you will look like after a mastectomy, but need to see you in person to assess whether DIEP can work for you (some women do not have enough abdominal fat.)

One issue may be that, when women go through immediate reconstruction, the breast surgeon removing the tissue and the plastic surgeon work in tandem, the PS finishing the operation the BS started. Even if you have delayed reconstruction it is a PS who would place tissue expanders at the end of the mastectomy and do the gradual inflations before reconstruction. So perhaps there are some hospital privilege or physician practice issues going on?

DIEP is a terrific operation but complicated, so you want to be in good hands. It's still relatively new, and plastic surgeons have figured out they need to be able to offer it, but you want to ask how many DIEP operations they've performed, and what their complication rates are. And ask to see pictures of other patients. Wishing you all the best.

CBJMel17

thank you all for your responses. They didn’t say why they would stop my care, but I think it’s because of a different PS outside of their immediate circle and hospital. But my issue was the aggressiveness of them. The PS surgery couldn’t even be coordinated at the same time or anything, it was a week and a half later. I wasn’t sure if that was a normal timeframe to wait. I just felt overall uneasy with things like no answers to how long the drains will be in, do I need a follow up appointment already scheduled. Things were just missing and it was bothering me. my first radiologist and the other one in the breast center also had concerns with the multiple calcifications and the possibility of needing biopsied to rule out everything with them, but when the records went to the Dr she flat out declined there was nothing there and I just felt uneasy with everything there.
someone asked if I had a MO…I literally am in no man’s lane with nobody just letting the days pass by as my cancer continues to grow.

Anonymous

This is some bs.

For whatever reasons they are pulling this, ultimately it is YOUR BODY. YOU are the one who has to feel comfortable with the surgical team, the treatment path, how you work with them. If they mess up the DIEP? YOU get to live with the consequences, not them. You are doing absolutely right in holding the line here,though I know it is frustrating. Ultimately a few weeks getting care started wont matter, but going with a team and treatment plan that you aren't fully onboard with can potentially have lifelong consequences.

You are doing the right thing even if the two weeks seems like forever. Once a plan is decided everything tends to go pretty quick.

RatherBeSailing

I know it's incredibly difficult. And it's made so much worse when you don't know why things are the way they are.

You may have received your pathology report before the doctor called because a new law called Open Notes took effect recently, requiring health care providers to release information to patients without delay. So this is happening more frequently, but it doesn't necessarily mean your surgeon was derelict in his duty or doesn't care.

It is normal to start with the surgeon, then go to the MO after the operation. And you do have a little time to have the surgery done (although I'm certain it doesn't feel that way!)

Regarding the delay between the operations, many surgeons operate one or two days a week, and have office hours or teach other days. It is possible the delay could be because the surgeon and PS operate on different days. I know I was originally matched with a PS simply based on which one was operating the same day as my breast surgeon (I ended up with delayed reconstruction.)

As far as drains, they can't predict how long you'll have them - every person and every operation is different, and even within the same operation drains often come out at different times depending on how the tissue is healing. And they'll likely schedule you for a visit about one week post-op, but I never had appointments scheduled ahead of time - the appointment was just part of discharge instructions. I suspect they figure you're not exactly going to Cabo in the first weeks after a mastectomy and will be around for whatever they schedule.

Providers often underestimate how anxious we become during the process, and don't realize how much what they consider pro forma is new and confusing to us. And of course that makes it all so much worse.

You do deserve to have a PS you are comfortable with, so stand your ground! Hoping if you get that straightened out everything else will fall in place. And that you begin to find some peace of mind with your entire team.

exbrnxgrl

CBJMel,

I agree completely with Sondra on two points. The first is that a few weeks is very unlikely to make any difference. Overall, breast cancer is slow growing. Many of us have waited two months or even a bit more as surgeons schedules and OR space needs to be coordinated. Please don’t worry about your cancer running wild. Second, you really need to be totally comfortable with your doctors. It is absolutely worth any delays you may experience to find providers that you feel comfortable with. Take care

CBJMel17

Well I just got a big kick to the gut…my insurance and the other Dr/hospital can’t come to a contractual agreement. My insurance is weird. Which means I’d be responsible for everything there. So I had to go back to the other doctors. The DIEP option is no longer on the table, maybe it’s for the best. No surgery or anything until the end of March though because of the surgeon and PS both being on vacations back to back weeks. So note I’m waiting on surgical dates and to get into the PS again for implants discussion.

RatherBeSailing

Oh, no. So very sorry to hear this news. You've had such a rough time of - hoping things get better.

CBJMel17

thank you for the support. Monday I’ll have more answers in terms of scheduling and acting. Just a hurry up & wait kind of thing. I know I don’t see the PS until 3/11 now & surgery not until 3/21 or later…. Just waiting in limbo it seems like.