I saw my oncologist yesterday and got the low-down on my situation. Well, sort of. Which is that I am on “wait and watch” until the next CT scan. I have another appointment with the onc in November … and that’s all I know. Oh, except that I have a hernia from one of my previous ops and might have to have another operation for that (??!). Seriously, I was just told this like it was nothing and was asked – “You mean the surgeons never rescheduled with you after your last appointment?” (in January). And no, they hadn’t. And then the onc suddenly told me I had to lose weight because of the hernia. Like duh. She never once mentioned this was important in terms of having cancer, which I believe it is. So I told her I was on the case, going to the gym every day and changing my diet …
But it was not a pleasant encounter. After waiting two hours I felt like she wasn’t even paying attention to me. Since my CT scan had come back clean it was like there was nothing else to say. I did ask her how – if at all – she thought this changed my original prognosis (50/50 chance of living for five years) and she said the prognosis hadn’t changed at all. It was just that I was doing better than average for the moment and that I should feel happy about that. Nice, huh?
For the neuropathy, I was given a prescription for some vitamin B6 pills. I was also given a referral to the pain clinic in case the awful pain I’ve been having in my right shoulder and arm these past few weeks is connected to the port. Which I got flushed out while I was there yesterday, though they made me wait and wait and wait.
Bottom line? I have no idea how to feel. Yes, I will be working on losing weight, getting fit, eating all those antioxidants, blah, blah, blah… but why the hell can’t doctors talk to me like I’m more than just a bunch of symptoms?
Got home and remembered the appointment for a mammogram that had been sent to me in the mail a few weeks ago. Kind of cool, part of a breast cancer early detection government programme. They send out notices to women of a certain age that an appointment has been set up for them, and mine is for today. I had meant to ask my onc if a mammogram was necessary for me considering all the CT and PET scans I’ve had over the past year and a half, but what the hell. If I end up getting breast cancer I don’t ever want to wonder if it might have been nipped in the bud by a proper check-up, like if I’d had a colonoscopy when it was suggested to me after a bad case of gastroenteritis – a year before my emergency op.
Hope I’ll still be able to make the 11.00 pilates class…
Honestly…. It’s like the doctor seems to think you simply have a hobby of going to sit there for three hours to ask something unimportant or something. “Sorry to take up your time with my silly little worries…”
I notice she is a lot “friendlier” during afternoon appointments. The morning appointments (mostly for people undergoing treatment) always get so backed up and the patients get very impatient and complain a lot. I have to admit I usually feel so worn out after a long wait that I tend to forget half my questions (yes, I should write them down). Like, I forgot to ask Dr Ana if I actually needed a mammogram after having CTs and PETs. So I sent her a text message asking her about this and she said it would be a good idea.
And so, off I go!
Enjoy the mammogram! I had my first one earlier this year and didn’t enjoy the experience at all, I’m afraid. I have to admit that it kinda put me off going agin, though I know I should…
You have had rotten luck with these oncologists. I don’t know if it’s a self-protection thing that these docs have. We had the same feeling when we went to see my husband’s oncologist – it was as if he had a (short) list of things to say and didn’t welcome any questions. Well, he was okay with certain kinds of questions – how long will it take? How will I feel? but anything that even began to question his decisions was met with a very frosty response. I thought doctors got training in speaking in a humane way to patients these days but if they do, it ain’t good enough!
I think the basic problem with oncologists is that most doctors hate to say “I don’t know”, and when it comes to cancer it seems to be mostly a crap shoot as to whether someone will get better or not. So there are very few hard facts for oncologists to hand out to their patients and I suspect this makes them feel uncomfortable with questions they know they can’t answer.
My friend Gaelen, who also has stage IV cancer, has been very lucky with her onc. He has been very honest with her and, as with all relationships, honesty helps build trust. And if you trust someone then you feel empowered, knowing they have your best interests at heart. You feel like someone has your back. And this really helps when it comes to making difficult decisions.
The main thing that has kept me from feeling like “just a number” throughout all this has been The Team – the three nuclear medicine doctors (including the head of the dept) who were once my English students and then became friends. They have always been willing to answer any and all questions to the best of their ability. They have been there with me since the first emergency op and during PET scans, and also make sure I get test results as soon as possible. But they also think that I ask “too many questions”.
My surgeons have all been very easy to talk to, perhaps because they deal with a lot more certainties than oncologists do.
Anyhoo, the mammogram did hurt, but only briefly. I was more concerned about the skin around the port being stretched so much that it might break it or pull out the tube. I still say that right between the boobs is a stupid place to put a port. But having a mammogram is certainly not so unpleasant that it couldn’t be done once a year. Trust me, Puddock, chemo is MUCH MUCH worse.
I think everybody reacts to mammograms differently, I have clients who HATE their mammograms because they are “so painful”, and I have never had anything but minor discomfort during mine. I think the technician also has an effect, they can lift and smash and position without hurting too much if they care to. There is a move towards a new (and actually more revealing) technology involving suspending the breasts in a tank and doing a sonogram, but a lot of places have invested so much in the x-ray machines they are reluctant to change.
I think that you have hit the nail exactly on the head about why oncologists are so hard to talk to, it is all about not wanting to say “I don’t know.” Plus, it has got to be depressing to be in a job where half the time you are telling people that they are going to die, and die soon. In addition, they must counsel people to get treatments that cause pain and a lot of suffering and may or may not prolong their lives in the process. Having people question them about this must be very hard to deal with, and because of the nature of their jobs they wind up hardening themselves against the fear and pain that their patients are experiencing.
Having a mammogram is like having someone roll a Mack truck over you boob 8 or 9 times and then park it, telling you to hold still…
And, just a notice to our male friends… They do mammograms on men the same way they them do on women. Men CAN get breast cancer, too.
At least your oncologist is talking to you. Mine has vanished off the face of the planet and my GP is on “medical leave.” Jeez, doesn’t make one feel very confident in their advice, eh?
Your doctor has zero people skills, but she’s right about the prognosis. That things look good don’t mean the statistical odds have changed: your fate may indeed be very different, and they may be able to tell that from the information they have, but the actual literal odds have not changed. And they are a good thing to keep in mind. Keeps things in perspective, by which I mean when you do outlive the odds, you’ll feel the victory. Better to feel it then than to feel it now and be wrong.
I have teensy breasts so I like to kid myself that I probably won’t get breast cancer since there is barely any tissue there to go wrong but… yes, I know that is factually wrong. I cannot for the life of me figure out how I’d be given a mammogram though – but I guess if they can do it to man-boobs, then there must be a way!!!
Fortunately mammograms tend to be less painful with advancing age. Less tissue to smash and squeeze 🙂 I can’t say I enjoy mine – I’m in county early detection programme due to my age – but they hurt less than, say, ten – fifteen years ago.
There are advantages with shrinking bra size.
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