brca bullshit

Thirteen week “Boobieversary” (and no where near the finish line…)

This is the email I just sent to my breast surgeon:

Hi Dr. Co,

I had not heard any more from your office after my last visit, and now my 3-month “free care” period has elapsed so I don’t know that I can afford a visit, but I have some things that are concerning me, so I am hoping you can tell me whether I need to come and see you. This whole process has been a very frustrating one and I think if I had known that I would suffer this much physically (and financially!), I probably would have just forgone the whole thing and waited for the inevitable – at least with Cancer people don’t ask you “but didn’t you CHOOSE to have this surgery?”. I guess I thought there would be someone checking in on things and that I would be seen more regularly, but instead I feel as though I was seen only when I requested to be seen and frankly, I was routinely sent to the psychiatrist (who does not think that this is an emotional issue, in case she didn’t relay that to you). Below are my concerns, and I would greatly appreciate it if you would give me an honest opinion as to whether any of them seem to be out of the ordinary enough to be worth losing half a day’s pay and paying a copay to schedule an appointment for (or if they are normal occurrences):

1. I have a very hard spot on the right side of my incision on my right breast (which I assume is scar tissue) that is growing larger and larger and is beginning to be disconcerting and even my boyfriend has noticed the increase in size. I have been massaging it like every book in the world says to do, but it is still hard as a rock.

2. I have what feels like a small lump in my left armpit, but it is so painful to touch either armpit that I can’t be sure how big it is, or if there is a corresponding one on the right side (my mobility on the left side is much more limited).

3. The implant on the left side is noticeably lower than it was since my last visit – I don’t know whether this is normal or something about which to be concerned. It is certainly annoying, and painful when in the wrong bra. If I wear the wrong bra (i.e. one that is supportive, but “squishes” the left side) I see bruising the next day.

4. The stitch remains. It looks like a zit, but when the head falls off (like in the shower), if I touch it at all, I can feel the sharp point from the stitch. It is extremely irritating and I sincerely hope that all the other bumps I have appearing all over the right breast don’t break through the skin like this one has.

5.I run a fairly consistent low-grade fever almost every day (usually somewhere between 99.1-99.9, when my normal temp is around 97.4). Last week it spiked to 102 (even after taking a 5/500 Vicodin per my normal morning routine), so my primary care doctor gave me a 3-day Zithromax prescription and that seemed to get rid of the high fever. The sad part is that I didn’t even know I had a fever (or that I was feeling sick at all) because I feel so generally horrible all the time that it took Dr. Ch PA noticing the flop sweat on my forehead to prompt anyone to question whether I was ill – this is a worry to me and often why I “undermedicate” my pain (against Dr. Ch’s orders) because I live in fear of not knowing when something is wrong because I’m taking pain killers.

Just to bring you up to speed:

  • Currently I am still doing physical therapy (which I do not feel is making a difference) and am skeptical that the ultrasonic therapy I am receiving is actually doing anything. I have been doing resistance band exercises (as well as very light modified yoga) at home to supplement this.
  • I am still seeing Dr. Ch and his PA for both trigger point injections (which so seem to help the spasms for a few days, but they will only do the right side because of the bottomed out implant on the left) and medication management.
  • I am currently taking: 300mg Neurontin 3x a Day, 5/500 Vicodins every 6 hours (I usually can do with 2, and I try to take as little as possible because I fear that, as I said above, I won’t know if there’s something SERIOUSLY wrong if I mask the pain all the time), and 2 10mg Valiums (one in the morning and one at night, although I usually only do half at night since the spasms generally only happen when I am pulling or pushing with my arms).
  • Also, while I feel that this should have no bearing whatsoever on my pain discussions, somehow I feel as though so far all of the doctors I have seen have chalked up my emotional reactions (which are genuinely in response to my frustration about being in pain or to being in EXTREME pain, as was the case with the physical therapist) to my psychiatric health, Dr. M would be happy to call and report on my emotional well-being to whomever is necessary – I see her regularly, and she has reassured me that this pain is genuine and not emotional or related to depression or anxiety.
I understand that this long email is taxing to read, and I appreciate your taking the time to read it, but I do hope you understand my frustration at not being taken seriously the last time I was seen. I wasn’t even examined aside from you telling me that the stitch hadn’t broken the skin (even though my mother had it in her tweezers the day before but was too afraid to pull on it), and then you mentioned something about the lack of Klonopin being the issue for the pain (which never made sense to me because I can’t take Klonopin with Valium). I do appreciate you connecting with my other doctors, and I do appreciate [Nurse C] getting me physical therapy spots (even though I just got a very large bill saying that they are out of network – an issue I will take up with [Nurse A and/or Nurse C] separately), but I am 29 years old and I can’t lift my vacuum cleaner or take out my own garbage cans or even pay my bills because every time I turn around there’s another $30 copay that is a direct result of something that happened in this surgery – the one that is now causing me constant pain. Everyone else I know that had this surgery is back at the gym already and lifting their children and moving furniture around, but I struggled to lift my 12lb cat to take him to the vet.

Please help me understand what is normal and what is not so that I can save the money (and save you the time). If any of these things seem abnormal, please call me or have someone call me and tell me when I need to be seen.

Thank you again for taking the time to read this. I look forward to hearing from you soon.

Emily

You tell me – is that an email that someone at 13 weeks should be writing? Should I have to update my own doctor on the status of my treatment? Should I have to advocate for myself to find “in network” providers when my doctors insist they use the “experts” they recommend? I’m not a doctor, no, but at this point, I am feeling like I know more about what is going on with me than she does… and that is both sad and scary.

6 thoughts on “Thirteen week “Boobieversary” (and no where near the finish line…)

  1. No words of wisdom, just feeling your pain. Hang in there and keep advocating for yourself.

    1. Thanks Lee — your blog is very inspirational to me because you truly can find the best in every situation (the silver lining, if you will).

      It’s funny, because I JUST got off the phone with “nurse C” and she was immediately so defensive on the phone that I had to call her out. I said “Please, stop speaking to me like this right now. You’re being defensive with me, and I did not do anything wrong – this very moment, I called to follow up about the insurance issue, and since I copied you on the email, if that’s what is making you so defensive, I just want to remind you that I was merely asking questions and expressing frustration and concern – not accusing or trying to get anyone into trouble.” She took a deep breath and then explained that “they” (the nurses? the office staff? clearly I had everyone in a tizzy!) had spent all morning discussing the issue and were trying to figure out when the best time to bring me in is. I brought her back to the insurance issue and we discussed the co-pay ($30 each time I go) and it was like she finally GOT it… she was like “gosh, that’s a lot of money”. The resolution of the phone call was mentioning (briefly) trying to waive the visit fee, and assured me that they were currently working on a plan jointly with my surgeon (Dr. Co), the billing/finance department and the nurses to make sure that everyone is on track to provide better care going forward. She also assured me that I would be called by my surgeon directly when she gets out of clinic… but I’m not holding my breath about that one.

      I got my surgeon’s email address by mistake (she was copied on an email from my pain doctor, who is open about his email communication), but I bet they’ll be more careful next time not to give it to a patient!!!

      Defensive nurses. Wait until my mother hears about this… 🙂

  2. Ugh Emily, I’m so sorry. All of those things sound AWFUL. And no, you definitely should NOT be writing that kind of email at this point…I hate to say it, but it seems like your medical team really slacked off! I’m blessed that the people at my plastic surgeon’s office are caring and thorough communicators, but I can see that not everyone is as fortunate as me.

    Is there someone in the hospital to whom you can report this?

  3. I know everyone is different, but I honestly haven’t heard much like this from others 13 weeks out. Even if it was normal, your doctor shouldn’t just brush off your concerns like this. That’s really not good patient care.

    I’m not too familiar with how the medical system in Canada works, but is there anyone else you could see instead?

    1. Oh my goodness I WISH I was in Canada! I’m in Virginia (just outside of DC), but my plan is an HMO and this is pretty much a one-horse…err hospital town. Sadly my doctor is the head of the breast program there.

      I’ve received several responses from her since the first email, and I’m still not satisfied that she understands the gravity of my situation. Instead of wanting to find out solutions and offer me better options-hell, I’d take ANY options-she seems content to let me “heal” while taking loads of painkillers and nerve medicines…not my idea of a great plan for “healing”. I just want to start my life and move forward. Honestly, I blame these doctors for inadequately preparing me, and then failing to follow up during crucial times. All anyone can do in my shoes is take a deep breathe an keep moving…so off I go.

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