Follow up oncology appointment....a colossal waste of time.

Apologies for the monologue in advance.
So yesterday was my 18mth post chemo appointment. That's two hours of my life I won't get back. What a flipping waste of time.

I have zero raport with this man. Bearing in mind that this is the bloke who told me at the beginning that we are basically wanting hormone therapy to "castrate me"...LOL....Yes those were the words. I could write a book on the dumb shit people have said to me along the way.

Prior to now he's told me that things will get better over time. Well I think that 18 months is enough time so I went in with a list.
There are various things that I attribute to chemo and rads, the others to Tamoxifen and a couple due to surgery.

Sun & heat sensitivity is one of the big ones right now as it affects my income. I have just about had to give up teaching riding as I can only tolerate being in the sun for about an hour or so in summer. I overheat badly and that makes me nauseas and dizzy.
Apart from the fact that I love teaching, (my specialty is riding biomechanics and overcoming fear which has proved quite useful throught BC) nobody needs to lose a few hundred dollars a week. No answer for that one it should have resolved by now.

I made the mistake of saying I had been able to improve some of the Tamoxifen side effects. "Well that's good" Next subject. No interest in what had improved and what hadn't.

I asked whether or not we should be doing hormone testing or something to see where that's at. Apparently that's not useful until about the 3 year mark and gives no evidence of the eficacy of the drugs.

By this time I had zoned out and didn't bother asking anything else. The ho hum of changing to letrozole after then just buzzed in my ears. Blah blah blah...

I have come to the conclusion that once active treatment is over, you didn't die, and have completed the suggested steps  the team  (apart from the surgeon for followup scans etc.) has pretty much done their job. "Next please"

"See you in six months." Why, what for?  So I can sit in the waiting room for an hour or more for a 10 minute appointment. From now I will go in to check the boxes, grab my script and stay in the loop just in case I need it later. They have new patients to worry about which is what they should be doing I guess.

To be fair, what can they really do? What's done is done. What am I really expecting from them anyway? There is no magic potion to reverse things just time, perseverance and never giving in to it.

I have no more tears for this thing these days so I just get annoyed. Luckily I do annoyed very well. Annoyed keeps me searching for ways to improve things and make the best decisions for myself and the quality of life I find acceptable. No less than 99% I might add. I can take care of the 1% with wine ::wink:

Steer your own boat lovelies, you are the best captain for it and nobody knows you like you.

Thanks for listening as usual. Hugs to all,
xoxoxoxoxo

chemotherapy-side-effects

hormone-therapy

survivorship

kmakm
Member
7 years ago
Nailed it @Jax1964.
Jax1964
Member
7 years ago
Thank goodness for this topic!!
I was beginning to wonder whether it was just me. I seem to spend a lot of my time whinging about waiting, lost medical records, uninformed registrars, procedural breakdown, unanswered phones, receptionists who tell you how busy they are, techs whose accents can't be understood, doctors who call you Allison when your name is Jacqui, specialists who say that you can't be feeling those side effects because they not listed on the packet, mansplainers telling you how to breastfeed and general all-round wankers who don't even look you in the eye.
Glad to know I'm not alone in this hell.
bakerr
Member
7 years ago
Well, I loved reading all your posts, I was lucky I had a great oncl when I started this journey, but she was replaced and the new one who is very nice but I guess has too many patients to see. My appt last week, was a total waste of time, had a Pet scan in Dec, showed up something on my lung, report said suspicious metastic lung cancer.So they decided have a CT scan go off all drugs till Feb and have another CT scan in Feb. The big reveal was last week, drumroll......young registrar turned up hadn't even looked at the scan,then she asked me why did I have a Pet scan.....when I said because I requested it she shut up, then she went out and grabbed another Doctor who said I wasn't supposed to be working today, so they both went out and saw the oncl and came back in saying we don't know what it is, the spot on the CT Scan hasn't got bigger so stay off the drugs for another 3 months and have another Pet Scan. Then the Oncol came in for about 3 mins and that was it. So what a complete waste of time. The thing that pissed me off was that none of them had even looked at the scans before I arrived. I suppose we just become a number in the system.

Aggie, I had an all clear letter from the Breast Centre, see you in 2 years, just lucky that the cancer was on the nipple and inverted it, but too late it had already spread. So I have no faith in Mamograms. Pet scans are unfunded, so you have to shell out $600.00, they seem to be better at picking up cancer, then other scans. So my own treatment plan is to have one once a year for my peace of mind.

So lucky I insisted on one at the end of my treatment. Like Kezmusc says steer your own boat. I see my lovely surgeon next week, it will be interesting to hear what she says.

Life goes on, lots of living to do, hey Stitches and craft show is on in Sydney.

Nighty Night to all, don't let the bed bugs bite. xxxx
kmakm
Member
7 years ago
I worry about my chest wall. It can't be seen or felt. My tumour was deep in my breast and my wide local excision was a bit more painful than usual I was told, because my surgeon had to dig into the chest wall a bit. It's just random fate now. I try to put it out of my mind, and mostly suceed.
Annski
Member
7 years ago
How awful it is to hear all the negative stories. This horror-show is the real frontline arena for the BC patients which nobody else seems to get. The attitudes! My surgeon was great, single mastectomy, no reconstruction. He is private, sooo expensive, I've gone public for everything else, hands-on staff have been great, as far as the radiation and medical oncologists are concerned I've only ever seen the "real" one once each, the rest are all registrars, I don't think it matters whether I go to appointments or don't, just see your GP they say, but that's a lucky dip. They will only be interested again if you get a recurrence or mets and as there is NO SYSTEM OF SURVEILLANCE nobody knows until it's basically too late and the tumours are big. How big? Nobody can tell you. What about blood tests? Not reliable enough they say - really too expensive on Medicare. Forget about scans etc. You're on your own until you can bring them another nice tumour. And they call this excellence in care? The whole system needs to be overhauled. Stay in warrior mode and stand on your dignity, friends. So glad that some of you have had much better experiences, it proves it can be done.
Beryl_C_
Member
7 years ago
There is a field of research called 'Psycho Oncology'. One article I read found that the very fact of being diagnosed creates significant stress. So, for those moments when you are being treated like our mothers and grandmothers, ie, invisible and not heard, say these words, 'Recent research in Psycho Oncology indicates that stress factors have a significant influence on our health and well-being'. or words to that effect. Of course, not possible in melt-down mode but perfect for warrior-mode or, 'mate, I'm standing on my dignity here' mode. Feeling as though you have been ignored or dismissed is not funny. Aggie your comments remind me of what its like to be trivialised and I'm wondering if BCNA have investigated the impact of 'less than satisfactory .......... '.
kezmusc
Member
7 years ago
Thank you lovelies. I am glad some of you have good ones.

This guy is apparently a good doctor but obviously has the personality of a wet dish cloth.

I am far beyond letting anyone upset me these days. I just get pissed. I was so angry when I walked out. Lucky I managed to zone out and not the other way. My filter is no good anymore.

He probably doesn't like me anyway after the appointment when I had a reasonably heated discussion with him regarding the cognitive issues of hormone therapy. The impression I got was that he thought it was all in my head (which it was I guess :) ) because it was not on his stupid list of SE's. It was extreme and uncommon according to him.

My GP is lovely, although she did not do a great job with telling me the initial diagnosis, but i guess there is no good way to go about that. I have really been trying to get off the doctor roundabout these days so haven't seen her for a while.
My radonc was the one I could talk to the easiest, but I have been discharged from her and she went on maternity leave anyway. I like my new surgeon (the old one decided to go private only now) but occasionally I get to see the reg's that I see on the ward all the time so that get's a bit weird.

Anyhoo, I will work it out. Sack him and get another one?...well I have 6 months to consider that. Besides, between all of us we have alot of information and knowledge to get things done right?

@Arpie, I could hire out the local indoor arena I guess but the cost would probably not be worth it. Winter was not too bad last year so hopefully I'll be able to do some as soon as it gets a bit cooler.

Thanks again everyone.
xoxoxo
Afraser
Member
7 years ago
Like @Sister, I've been fortunate in both my oncologist and my surgeon, whom I still see once a year. I don't need to but I like them. I don't expect them to know what's happening everywhere, but a bit of a check does no harm. I'm not relying on them just keeping up acquaintance. Clearly not everyone's experience which is sad.
tigerbeth
Member
7 years ago
@kezmusc I agree wholeheartedly ! I had dinner with some girlfriends tonight who asked whether I was having tests ,appts etc.... I said no but just had appts with onc & med onc which really were a waste of time ! Granted if I was having issues it may have been different ,I didn't have any specific questions this time so I was in & out in record time ,it took me longer to drive there ! Although the med onc did check my boobs which I guess was reassuring .
Don't need to see the rad onc until January 2020 !! Sorry the guy wasn't interested ,get a new one if you can ,he sounds awful . xx
kmakm
Member
7 years ago
That was a good muse @kezmusc. Interesting. As you say, what more can they do at this point? It's a check in I suppose, to see how you're travelling and if there are any concerns that they can address. A good appointment would be one where you had the opportunity to ask questions and have them answered, and where you would walk away bolstered in spirit in some way, if not with actual solutions.

When I met my new oncologist last September, she said I could see her in March if I wanted but she was happy to leave it until June if there was nothing specific I needed to discuss. I appreciated that flexibility.

Your description of the conversation you had today sounds like a classic case of a man 'listening' to a woman but not 'hearing'. He checked in with you but that's it. And what's the point of checking to see if there are any problems if you're not going to try to solve them? Nothing. I don't think he's the right doctor for you. If you have the energy and the opportunity, I think you should find someone who will work with you properly. That could even be a committed GP.

I agree we're the captains of our own boats. We need to be our own best advocates. I believe strongly in the wisdom often said here, of trusting your team. I have ditched a counsellor and an oncologist because I felt they weren't the right people for me. I travel out of town to see my GP because she's marvellous. I put up with my painful PS only because he's a temporary member of my team. It's hard enough doing this with good doctors. Big hug lovey, K xox