So frustrated with QOL and doctors

gemini4

Warning ... major vent with cuss words ahead. Don't read if you don't want to get slimed.

I am so angry ... and worn out, paranoid, deflated.

I was the sunniest patient to my whole team ... smiling, so happy that the strange feeling in my breast (that *I* found and would have gone undetected had I not indicated that I had felt something) that actually turned out to be breast cancer was only Stage I, caught early, I'm so lucky! Kept a positive, upbeat attitude, didn't want to worry anyone ... my goodness, the last thing I want to do is upset someone! Lumpectomy ... oh wait, margins not big enough ... I need another one! But that's OK, don't worry about me. I'm going to be just fine! Radiation ... that's OK, I don't need chemo ... see everybody, it's really not a big deal! So please don't worry about me! It's not a big deal, just kind of like a sunburn. Tamoxifen ... yeah, I'm getting hot flashes, but I'm at that point in life anyway! I'm really fine!

Three years later. My lumpectomy breast might as well have been a mastectomy, because it's simultaneously numb and sore, itchy, totally non-functioning sexually. But see, I get superstitious about complaining. The other one works fine (though it scares me as a potential host to a new tumor). I have gained at least 30 pounds in just three years. I am afraid to get on the scale, because seeing the number that I haven't seen since I was days away from giving birth with my one and only child 16 years ago will surely send me down a dark, deep hole. But I'm tall! So I can "carry" the weight! And I can clean myself up and look nice and "pass" ... but you know, there's no hiding when I'm drenched in sweat and huffing and puffing up stairs because 30 pounds is a shit ton of weight to be dragging around. The other week I was in a parking garage and decided to walk the five flights of stairs instead of taking the elevator. Keep moving! Except that after four flights, I was gasping for breath and felt like maybe I'd have a heart attack. I was so scared. And no wonder my knee hurts -- only natural when I'm carrying this extra weight. And my feet hurt, too -- I think the tamoxifen has something to do with it. I remember them hurting when I was nine months pregnant, too. Only there's no baby on the way. Just scary extra baggage, literally and figuratively.

Today I had my annual appointment with my GYN. I couldn't keep up my smiley disposition. I'm so fucking scared. I told the doctor about the weight gain. She asked what I'm doing. I wanted to scream. I'm trying my best, I replied. Honestly, ever day I wake up and think that today will be the day when I get control of my insatiable appetite. But then I get hungry and something happens ... I get shaky, weak-kneed. I never had trouble losing weight as a younger woman. She told me I should eat small amounts all day. OK. But I feel like I'm some sort of food addict. I feel so out of control. Eating small amounts suggests that I have some sort of control.

Anyway, the one good thing is she gave me a pamphlet for a therapy practice. I am no stranger to therapy; I had weekly talk therapy with a counselor for over 11 years to heal the painful consequences of my childhood (where my father tragically died when I was a little girl, and my mother way too quickly remarried a bastard who was abusive to me and my sisters ... and she did not protect us). I am proud of the progress I made, but I think I'll always be on a journey. So I am definitely going to call them.

But here's the really shitty thing that sent me over the edge. My well-meaning GYN gave me some samples of Brisdelle for my hot flashes (I get dozens each day ... I told her they're as normal to me at this point as breathing). I tried Effexor that my MO gave me and quit after the first day ... I got a massive headache and a feeling that I wanted to jump out of my skin. I guess you'd say I'm sensitive. I was thinking that I recalled reading something about Brisdelle and that it fell into the "too good to be true" category. I asked her if it was safe to take with Tamoxifen. "Yep!" she replied.

When I got home, I opened the instructional leaflet. The first thing I read is "Reduced effectiveness of tamoxifen: Tamoxifen (a medicine used to treat breast cancer) may not work as well if it is taken at the same time as BRISDELLE. If you are taking tamoxifen, tell your healthcare provider before starting BRISDELLE."

:blink:

Just breathe, self.

So add to the list of burdens: I have to be my own doctor, too, I guess.

What do people who don't read everything do?

Thanks for reading. I probably should have just kept this as a personal journal entry, but maybe this will help someone. I'm going to call and make an appointment for therapy.

keepthefaith

gemini, I can see why you are frustrated. I think I would be, too. For me, when I used to need a Gyn., she never really seemed to be in tune to SE's of meds, etc.and very quick to write a RX instead of seeing if there was something else that would help. Maybe it's time to find a new Gyn...? I have found that I go to a specialist for everything now. I would probably go to an MO for your Tam SE's, if it were me, but that's my opinion. I hope you get things straightened out. You definitely have to do your research and stay on top of things when it comes to your health. I have gained weight on Tam also and find that I have to eat almost nothing in order to not gain. I do kind of graze all day and have one small meal, usually late afternoon. I have reduced my calorie intake greatly and walk more than I used to. I have lost 6 lbs since the first of Feb., so it's a start. Best wishes.

Goodie16

Gemini, I completely get your frustrations. Living with cancer is tough work and is sometimes made harder by the vary people that are supposed to help us - our doctors. That being said, I have found that for me it is easiest to allow my MO to manage ALL medications. The most important thing for me is maintaining/managing my cancer, so I don't want to take anything that will interact with those drugs. As the previous poster said, my MO is the expert on what will interact/won't interact with my current meds. Once I put all of my medications in his hands, I felt a lot of relief and things have been much easier.

SEs from the horomonals are tough. With regards to the Effexor, it typically would need some time in your system to get to a therapeutic level and be able to help..so you might not have tried it long enough. That being said, if you can't take it you can't take it. Have you discussed supplements or herbal medicines with your MO? Mine has me on several supplements that have eased the SEs of the hormonals. Perhaps this might be a route you want to explore with your MO too.

Finally...it's ok to not be upbeat and sunny all the time. It's perfectly fine to look at the situation and say THIS SUCKS...cause it does, a lot. Allow yourself to feel your emotions, process them, and move on. Best wishes to you.

BethL

I feel exactly as you do. Reading your post brought me to tears. I'm also the one who puts on the happy face and the last week..,,I'm just pissed off all the time. I'm tired of smiling. The pain from meds keeps me from exercising all the extra weight I've put on since December. 15 pounds so far. And I had already gained 10 when all this started. I'm single now, and am afraid now that I'm nippleless, that it will always be that way. But I smile and say things like ... I'm ok alone, I love my life, I have my kids. 11 years ago at the age of 38 I was diagnosed and like you my lumpectomy breast might as well have been a mastectomy. I waited 8 years then went to a plastic surgeon who put an implant in, then a year later underwent a mastopexy in the good side in an attempt to make things even. That didn't work. Then last July I did something I knew I shoukdnt .... I posted on Facebook a ribbon celebrating 10 years of survivorship and....Yep breast cancer again one week later. Jinx.So after 2 surgeries trying to make the girls look good, they tried to kill me again. So away they went . I think I was doing ok until recently. Maybe it's the arimidex, or the lupron, who knows. It all sucks. You're not alone none of this is fair, we don't always have to smile, it's ok.