So this is the random post that is about an appointment I had yesterday.
Last time I saw my oncologist she was feeling bad about how quickly the TDM-1 failed me. I’m not sure if I had posted this previously, but she told me that she has been disappointed in some of the results she has seen amongst her own patients that have been on TDM-1. The patients that moved directly from Herceptin to TDM-1 after a treatment failure often had long-term success of 1-2 years. Patients that switched from the Herceptin/Pertuzumab combo, the last combo I was on, my onc has only seen 1 patient of her 5 or 6 patients (I know, tiny sample size so no statistical significance) that has had long-term response. Everyone else had almost immediate failure like I did.
Pertuzumab and TDM-1 were being studied at very similar times so there were not many patients in the TDM-1 study that would have been previously challenged with Pertuzumab. Now that Herceptin/Pertuzumab has become the most common 1st line treatment it will be interesting to see if there is any change seen in the efficacy of TDM-1.
OK. Wandered off topic enough, back to yesterday.
At my last oncology appointment my onc was also feeling really bad about how uncomfortable I was because of all the lymphedema in my arm. She said she would refer me to the Pain and Symptom Management Clinic at the Cancer Agency to see if they had any suggestions to make things better for me. I was a little surprised as at its worst my pain has been maybe a 3. Overall it has been insignificant enough that I have only popped a regular strength Tylenol a couple of times to be able to sleep better. My onc said that she would feel better just to have me on their radar and they may have something useful to suggest as she really has no ideas what to do for me as I am a medical anomaly yet again.
Yesterday ended up being the day of my consult for the clinic. It was going to be today but they ended up having a cancellation yesterday with the head of the clinic so the scheduler moved my appointment up a day.
The consult ended up taking about 30-40 minutes and it involved the head of the clinic plus a couple of nurses, one of which I had seen a few times previously when she had given me my Zoladex injection. The doc was an older guy who definitely hadn’t reviewed any of my file but it only took him a few minutes to figure out I had breast cancer and it was originally on the left(?) side. I agreed with him to put him out of his misery.
We did a review of my history, when was surgery, radiation, when did the skull progression occur, when did the enlarged lymph nodes on the right side start, when were they removed etc. etc. etc. We discussed my ultrasound results from the scan a couple of weeks ago. No clot was found but a vein was definitely narrowed. The suggestion that I may need to go on blood thinners again was brought up which didn’t surprise me. I hated being on the thinners before, and would much prefer to not go on them again, so I was really glad there was no clot. I did wonder if it would be better to be on them at least until the inflammation and lymphedema have gone down, just in case.
Then we moved onto my T-rex arm and how uncomfortable it is. The arm feels so heavy that my center of gravity is off so my balance is wonky. And there is the feeling of a weight constantly pulling on my shoulder. And the growth at my collarbone interferes with the tendon in my neck so it makes my head feel off-balance and pulls on my neck. All in all really uncomfortable but since the new treatment is starting to work the general tenderness from the overstretched skin is almost gone.
To help with the lymphedema, the suggestions were compression sleeve which really isn’t a go right now. The sleeves are uncomfortable at the best of times and affect range of motion with minimal lymphedema. I couldn’t imagine how unpleasant it would be to wear one right now. Plus I’d probably have to go custom this time so it could take a bit before I could even get it and it is possible my arm could shrink enough during the wait time that the sleeve would be too big and therefore useless. I only get coverage for 1 sleeve per arm every 6 months so I don’t want to waste that as a custom sleeve is not cheap.
The next suggestion was lymph drainage massage. I already do that on myself as I had it done a few times in Vancouver plus I’ve done more reading on proper technique since. The thing with lymph massage is it is very light pressure, only enough to move the skin. Right now the skin is so tight it takes more pressure than normal to move the skin which is okay for a few minutes but it gets unpleasant pretty quickly. I also suspect that the tumours and inflammation are interfering so much with the drainage that massage may have limited effect right now. I have found a massage therapist near me that I am planning to consult with but I was going to wait for a little more tumour shrinkage first. Again, I get a limited amount of massage therapy covered so I don’t want to waste any of the appointments.
The 3rd suggestion was that they can insert needles just under the skin and drain some of the fluid out. My response to that was, “yes, please, I would be all over that.” Then I commented that I had a cat and with my skin so tight I had wondered if she scratched me if my skin would just explode apart and a bunch of fluid would pour out.
The doc responded that a cat scratch would lead to cat scratch fever and that can be difficult to treat. In fact, according to the doc I would be “impossible” to treat. Excuse me?? Impossible to treat??? Am I some kind of alien that human drugs don’t work on? I know I have T-rex arm but I’m pretty sure I’m still human. Good thing I wasn’t currently covered in cat scratches and the beauty under my eye was pretty much invisible or he may have me admitted to my death-bed then and there.
He then went on to say that drain method can potentially cause an infection and I would probably get one. There was a pause and then he said he hadn’t actually heard of anyone getting an infection. I didn’t really get where that was all going but I got the impression that although I liked the idea, the drain plan was being taken off the table as a possible option.
At that point it was time for the physical exam. Ugh. Ok. I get tired of being poked and prodded, especially by chilly hands but I survived. After I had changed out of the gown it was time for the final discussion. The first thing the doc said was that while I had talked about my arm being uncomfortable, while he was examining me he noticed that I kept flinching so I was obviously in pain. Oh. I just thought it was because I didn’t feel like being prodded by slightly chilly old man hands. Sorry my mistake.
The solution to all this pain I am suffering from is Oxycodone.
Uhh, really?? There’s no room for regular strength Tylenol? I can get really crazy and maybe take an extra-strength if it makes you feel better. But, no, Oxycodone. Uhhh, no.
Oh, well in that case, how about Fentanyl patches? What??? Are you freakin’ kidding me??? Worst case I get to about a 3 on the pain scale. At least I have found out where the opioid crisis stems from……uncreative doctors that solve any problem by throwing drugs at it. Thank you, I’ll pass, take your moronic suggestions to some other part of the galaxy.
I did say that I avoid opioids if at all possible as I have taken Tylenol 3 with Codeine and that has made me vomit. It was a really fun experience. It was after my last lymph node surgery. I was not feeling great so I thought I’d take a pill and pass out. Instead, I took a pill and 10 minutes later puked my guts out. That was awesome. And then I didn’t make the connection and did it a 2nd time with the same results. Joy.
Then the appointment got really fun……the doc said, you are obviously in pain. You are trying to be stoic. There is no point. You don’t win any medals for being stoic.
And, wow, you are a jackass, Mr. Dr. Sir. Were you the one that was bottom of your graduating class. All you remember was that one class on pain management and handing out opioids? (I read an article recently from the CBC talking about the opioid crisis, apparently vets get 5 times more hours of training in pain management than doctors do. Huh. I think I just saw proof of that.)
I was completely unaware that I was trying to win medals. I thought that was the Olympics. I am in cancer treatment. I’m trying to STAY ALIVE.
One quick note, if you are handing out cookies, I will take those. 🍪
So then, just in case we hadn’t beaten the opiate horse quite enough, he suggested low dose methadone. No. Let’s just leave it at that.
And finally we can move on, or back, to discussing a potential blood clot and the possible need for blood thinners. Yuck, but yea, I know. I have been wondering that myself. Then, to make things even more super fantastic, he said that getting a blood clot could interfere with my treatment. In fact, the drugs I am now on can interfere with clotting so if I get a clot my oncologist may just stop treating me.
Ummmm…….did you just imply some kind of blackmail about if I don’t go on blood thinners I won’t get any more treatment?? That is kind of what it felt like. No talk of switching treatments or pausing until the clot resolves. Just stop treatment.
At that point I pretty much thought I was going to start crying I was trying so hard to not let my head explode. The nurse that I did know stepped into the conversation at that point and asked how I was sleeping. I was tempted to just say that I slept like a rock 8.5 hours a night I was so ready to get out of the room. Instead, I was slightly more honest and said I was not sleeping great but it wasn’t interfering with my life so it was a non issue. What I actually find is that I have fallen back into my old, favourite routine of staying up late and waking up around 9. I may not always get as much sleep as I should but I don’t care. Those hours make me happy.
Anyhoo, we all agreed that I should get a referral to the Anti-Coagulation clinic and then I could finally leave.
All in all I don’t think I have ever been treated so disrespectfully by a healthcare professional before and in my years as a lab tech there have been a few doozies. I can’t decide which was the worst part, feeling like I was being blackmailed, or that if I kept breathing something would go wrong. Perhaps that I wasn’t a 60 year old male doctor. He asked what I did for a living and when I said I had been a lab tech I felt like the giant thought balloon over his head was “oh, poor little girl, too stupid to get into med school.” Or maybe that it was because my opinions were ignored. Or that I apparently don’t know my own feelings and doctor knows best. I had not experienced it before but there was definitely some doctor-god complex in the room. Needless to say my unsuspecting oncologist is going to get an earful tomorrow.
The whole appointment felt like a waste of healthcare dollars. I already knew about compression sleeves and lymph drainage massage and I am waiting for an appropriate time to use both those tools. I didn’t know about the whole stick a needle in it and let the fluid drain out. I thought that was awesome. Apparently I would be the 1st person to ever get an infection from the procedure though, so no, it’s not gonna happen. We did agree on the Anti-Coagulation clinic but I was planning to talk to my oncologist about that tomorrow as I already knew of the clinic. Yup. That money definitely could have been better spent elsewhere.
Maybe I do deserve an award…….
Thank you. I have had so few bad experiences with our health care system even with all the time I have spent interacting with it these last few years. This experience was so unexpected that I really didn’t know how to respond. I had been looking forward to this appointment as I was so hopeful there would be some new, interesting ideas to share with me, but no. Now that I have dumped on you I will hopefully be able to discuss it all more rationally, and without swearing, with my oncologist.
Oh, and one final insult, I am too pale. Have I had my blood levels checked recently? Gee, I don’t know, maybe it is winter and I haven’t seen a lot of sun recently. Not all of us have the beautiful florid complexion of high blood pressure just waiting for the heart attack look.
And now I am done. The bitch has left the building. My next post will be all puppy and kitten pictures. 🐱