I wish I didn't know now what I didn't know then.

kittysister

I do have an appointment with my oncologist next month, who is in the same medical system. It's just a routine one, to let them know how I am doing on the Femara. I did since go see a a breast specialist (not in this medical system!) who said I can have the "dog ear" removed. But they like to wait until at least 6 months after radiation treatments to do any kind of surgery, so I have time to think about it. It would be a 3 inch incision and I'm pretty paranoid about another surgery. So I'm still thinking about it. Thanks so much for asking!

kittysister

P.S. tjh, this is a huge medical system. Believe me, I would if I thought it would do any good .. but who would they believe, the doctors or me. It would be like trying to fight the system.

Tomboy

kittysister, I am so glad you came here. My experiences are more like yours, and I do not trust the medical system at all anymore, and I used to have such a great amount of respect for them. This is a very good topic, RaiderGirl.

kittysister

Thank you, Tomboy. I think it helped to write it all down. I probably even left some things out that will come to mind later. I don't know what you've been through, but if you ever want to talk about it here (or even send me a private message), I'd be glad to hear your thoughts. Maybe we could compare notes. Ha! Well, my eyes are heavy, so it's off to bed for me. Will check in tomorrow.

3-16-2011

i wish I didnt know protecting my children less from the pain of loss would shockingly mean loving them more.

I wish I didnt know that my husband did mean it when we. said for better or worse and in sickness and in health (25 years ago).

I wish I didnt know how greatful a person could be for good health insurance.

I do hate pink ribbons almost as much as side a f @#k s.

BC2015

kitty sister - your experience sounds awful. I feel for you and hope it gets easier! I have had seroma, web axillary cording, pain etc.... But nothing like yours. It all stinks. I think the Drs downplays the effects of all of it, smile and want us to move along.... Drs Optomistics I call them.

kittysister

Thanks, BC2015, it sounds like your experience didn't go well, either. I'm sorry. Hope things look up for you, too!

RaiderGirl

Kittysitter

You said "5. I wish the surgeon there at the clinic hadn't said "I don't know what you're so worried about - it's only a matter of taking out the lump, a few rounds of radiation and a little pill every day". It was downplayed as much as anything ever was .. and made me feel like a stupid worry wart"

I heard something like that too from a non-medical person. I was told that it wasn't that t bad and that I should just move on.

I was in a mood that day so I replied "Oh, so you won't feel when your daughter is diagnosed with this?"

Beachbum1023

I wish I didn't know now what I didn't know then

I saw my MO yesterday and she went through all of the treatment options with me for the next plan. And she said "you can pick the chemo you want to go with, just read through chemocare.com and we will discuss your choice in two weeks".

So I wish I didn't know anything about chemo, I wish I didn't know what a CT and full body scan means to me, and I wish the only things I know about any side-a-f**ck was still a rotten hangover!

justmaximom15

I'm pretty new in all this so I'm sure I'll have more to come but right now all I can say is how much I agree with all the hatred for the pink ribbons!! I actually like pink but now I hate wearing it because I don't want anyone thinking that's WHY I'm wearing it. 10 yrs ago, I was among those that "raced for the cure" in St. Louis then I began hearing of all the money and how it was distributed and I just quietly stopped supporting it. Now, I'm furious about it.

One thing I can say that I know now and wish I didn't.... how much I've already mentally detached myself from my breasts because I feel like one of them has betrayed me. Silly, I know but every time SO touches my breast (sorry if that's tmi) I nearly shudder.

angelia50

kisttysister, I am sorry for your terrible experience but it sure makes me glad I made the choice I made. I live about 60 miles from a breast center and when my mammograms were coming back bad, I decided if it was bad, I wanted to go there for treatment. When my doctor called and said we need you to see a surgeon, I said send all my records to the breast center. During the few days waiting for my appointment, I had local people that had surgeries here in my town to tell me, you should see dr such and so, he's great and I almost did that. I almost thought, why drive that extra way, why make all that travel but the day I was ready to give up, after praying what should i do, I got the call with my appointment. I looked at it that God guided me to that breast center and I am so thankful he did. I started off thinking I would have a lumpectomy but a MRI later showed that wasn't a good plan. I figured, why not get a surgeon that does this type surgery all the time, and has devoted their time to learning the latest and greatest, as well as I figured they would be up on the latest treatments. My surgeon, oncologist, and plastic surgeon all see me at the same location . All testing is done right there and after surgery, a team of doctors met to discuss my case and best options, so i had several opinions, not just the one. I would not ever wish anybody had to have breast cancer but when I have friends who are having test, i tell them, go there, don't even waste time locally, its more than worth the drive and I was fortunate too, that 8 years prior to my diagnosis, I had purchased cancer insurance, which pays me .50 a mile and for a companion, so that was SO helpful. Seek someone in the field to help you get your surgery corrected.

RaiderGirl

Beach,

Sh*t. Let me see if I understand this...you have the joy of choosing your own chemo?

Somehow that seems cruel to me.

hug to you

Beachbum1023

Hi Raider Girl, that is exactly what she meant. I can research the chemo choices, and decide the one to take. It is almost like some weird torture to pick the one I want. But considering the outcome and side-a-f&*cks, I think maybe assisted suicide?? Or maybe "guilt free" medicine on her part................yikes.

I wish I didn't know now what I didn't know then - My MO, My Cardiologist, My RO, the ER, the infusion nurses, yep all of it.

MsPharoah

Beach, I am really shocked that your MO has asked you to not only pick your own chemo, but do the research that would be necessary to do so. I am a big control freak and do research all the time, but I definitely want my MO to be able to tell me about the pros and cons and give me a recommendation. Then I will research and make a decision.

MsP

Deblc

Beach: whaddya mean you are to research and pick your own chemo?????? Did you spend 20 years in medical school? Unless I'm missing something.....change your MO !!!!

kittysister

RG, I agree, it's a pretty rotten thing to say. But you had a great comeback. I wish I could think that fast! I usually have a delayed reaction of what to say. Ha! And since I felt so inexperienced (and really, I WAS - I knew nothing), I just figured he knew what he was talking about.

Yeah, Beachbum, that's her job, I would THINK and surely your MO would know which was best. What the ..

Angelia, I'm so glad you had an actual breast surgeon. I know now. Glad you had the special cancer insurance. I've gotten offers in the mail for it, but dumb me just never thought I would need it! I know I have complained a lot, but the good things I have going for me are Medicare and a good supplemental health insurance policy. If not for that, hubby and I would have gone under by now.

kittysister

Justmaxiemom, I feel the same way. I try to avoid full length mirrors now, too. But I have one on the inside of my bathroom door, so it's hard to avoid.

RaiderGirl

Beach,

I still cant accept the pick your own chemo menu.

Its almost like the MO does not want to be responsible for the next step or for your experience.

Puking everyday, well YOU choose this chemo.

Really the universe needs to cut you a break already.

Beachbum1023

RG, I kinda get it, I'm the one doing it. But since we had the discussion about quality versus quantity, I choose quality. I had my CT today, and a full body scan next Wednesday to restage. But when I pulled the treatment notes today online, I see she noted that I was deciding on "any further chemo as a palliative treatment plan". Gulp. Not ready to hear that. Since we had issues and words over the Adriamycin and the heart damage, she will give me the info and I take it from there. But at least she seems to be more responsive, listen to my concerns, and provide options. Since so many chemo regimes are not heart friendly, I can at least listen to the input from her, and make my choices. But then again I get the feeling that only so much will happen as well.

I wish I didn't know now what I didn't know then: That I did not have life insurance because I couldn't afford it after my divorce, now it just means that I cannot be insured. Who knew?

RaiderGirl

Beach

Have you really decided against any further chemo? I don't recall you ever saying that was a absolute no. I hope the MO has a few more tricks in her bag to offer you.

Let us know what happens.

LIFE INS: I already know mine wont renew. I have paid those f8ckers for years but now with this dx they can't cancel the policy but they wont renew it either. So if I don't die within the next 3 years, they got all my money. Sh*t on a cracker.

Piscean

Hi Keepthefailth,

Can I ask if you had the Oncotype DX test and if so, what was your score?

Beachbum1023

Raider Girl, I wish I didn't know now what I didn't know then: that having a long life does not necessarily mean a long healthy life.

I get my CT and whole body scan results on the 12th, so trying to stay super busy and forget it until then. Like that is going to happen. I am not going back to chemo before the end of the summer/fall. I would rather load the front end of this shit with great days, and suffer later. But I am hoping for stable! Then I am good to go. Damn and I always thought stable was where I kept my Tennessee Walker Buddy!

RaiderGirl

Beach

I wish I didn't know know what I didn't know then:

That the women on this forum(you) with so much more to overcome, women that have huge difficulties

are the women that do the most to comfort and guide other women (me) whose suffering by comparison is equivalent to a bug bite. I thought about it allot and I can't completely explain it but I believe it has something with the fact that your reality has made you more attuned to suffering ( bug bite or more).

This got mushy but I needed to tell you and the others like you that I feel ad appreciate what you do.

Mush mode turned off.

And you crack me up....Tennessee Walker stables. LMAO

kittysister

Dear Beachbum .. wishing you stable today. (((HUG)))

Beachbum1023

I wish I didn't know now what I didn't know then:

That it would be possible to cry more hearing the MO say that I am stable, than the day she told me I have breast cancer. I have my summer off, no more scans until after Labor Day!! I am so happy to be stable, I want to kiss a horse. Cheryl

MsPharoah

Beachbum. Hugs!!! So very happy for you.

MsP

gypsyjo

Beachbum, Enjoy your summer!

kittysister

Beachbum .. YAY! Hope you have a great summer.

mel147

Beachbum - congrats!! Have a great summer off!!!

Holeinone

Beachie, hope you had a great day, being able to relax & celebrate your good news. Congrats !