Apparently I Am "Just Diagnosed." :(

LW422

Hey Beesy. I'm only interested in Dr. Brown's abilities, and it seems that he has installed over 14,000 ports so at least he's got some experience!! Hopefully I'll only have to meet him once and be on my way. And I agree... let's get going with this thing.

MinusTwo

LW - ability is critical - and that's probably all that counts for a doc you meet once. But you need to be able to have a 'meeting of the minds' with your BS, PS and particularly your MO. Sometimes you get someone who is absolutely arrogant. You will be with them for the long haul so you need to consider their manner too and how they share information and advice.

Good luck tomorrow.

LW422

Hey -2. Yes, I know that some doctors have massive egos and no bedside manner. I am looking forward to my meeting with my MO tomorrow so hopefully I can get a feel for how humane he is, or whether he is looking for more scientific accolades as he has many published papers. Unfortunately there is a "team" of IBC treatment doctors in place at MDA; not sure what I would have to do if one of them rubs me the wrong way.

I had the port placement surgery today and so far, so good. I have a bandage over the port site under my collarbone, and a bandage on my jugular vein in my neck. It wasn't painful at first but it has been several hours and it's getting sore; kind of hurts to turn my head and I have a headache. I'm going to take a Tramadol and go to bed early. Not sure if I should sleep in my bed or in a recliner tonight... I have a tendency to "toss and turn" and don't want to mess up the port.

LW422

My meeting with my MO went very well today. I'm happy that he is a good listener and takes time to "hear" me. My chemo is scheduled to begin next Tuesday with Taxol (12 weeks). I was asked if I'd like to sign up to be part of a clinical trial for IBC and I am trying to decide about that. It will require additional biopsies and of course, trial drugs that may or may not add side effects to my treatment.

I'm going to read the Clinical Trials thread and see what the general consensus is. I need to give MDA my decision ASAP since they'd have to adjust my chemo for next week. Has anyone here participated in a clinical trial?

Anonymous

Hi LW

I'm glad your meeting went well and tou felt heard by MO. Very important.

Hopefully some good advice re trial comes your way. A lot to think about and so much all at once but you are doing great. How does your port feel today?

Did you sleep ok?

Astrid.

LW422

Hi Astrid. The port is pretty sore today; seems to "pull" when I turn my head but I'm sure it will be better as it heals. I slept really well, probably aided by the pain pill.

I have already decided against the clinical trial for several reasons. Mainly that I want to focus on standard treatment and not have so much on my plate at once.

How are you these days?

Anonymous

sleep is good! Soooo good!!😀

My port scar still hurts til this day. Nasty thick keloid thing. Was put in the left side instead of right because person installing could not find a vein. (Apparently). Before I went under, I heard her arguing with staff too. Should have run right there and then.ah well...most people have no trouble with them though and so beneficial for use.

Yeah, you have to do what is right for you L Dub.

Me? All good. Beautiful weather here today. Took doggie for long walk.

One day at a time.

You've got this.

MinusTwo

LW - hooray that you felt you could communicate with your MO. And great the the port is installed,. Once past the initial surgical issues, I never had problems or pain with my port; Hopefully that will subside. Personally I agree with your "trial" decision. I didn't participate, and although I feel guilty, I thought my reasons were valid.

LW422

Astrid--sorry about the scar; just consider it a battle wound.

The morning of my port surgery, it seemed like I waited forever in the surgical prep area. The doctor finally came in and was very personable, bragging about how many ports he has inserted and his extremely low "failure rate." He called my husband from the room and told him I was headed into the OR and it would be about an hour.

Well. A nurse came in and they huddled a minute, then he told me that the patient before me had a kink or something in her port line (seen on after-surgical x-ray). He had to delay my surgery to re-do hers. HAHA That did not instill the greatest confidence but when he finally got to me everything went well.

LW422

Hey -2. Yes, I was relieved that my oncologist seemed to communicate well. I learned from reading about him online that he is a 2-time cancer survivor. Though I hated to hear that he had had cancer, it made me glad to know that he understands what it's like to sit in MY chair.

Funny but after I decided that I would not participate in the trial, I called to notify the researcher and she told me that my insurance company had declined to pay for the trial procedures anyway; they consider them "experimental." I'll take that as a sign that I made the right decision, lol.

Anonymous

arggh!

Rotten luck. But he sounds thoughtful and nice. Excellent. Having a great team is so important.🙂🌾

LW422

My port seems to be healing nicely and isn't as sore as it was. After meeting with my MO I got the great news that my endometrium (uterine lining) is thickened and he wanted me to have a gynecological consultation. Of course this resulted in a uterine biopsy today, which hurt so bad I wanted to stand up in the stirrups and scream. I am really, really tired of all the never-ending tests, scans, biopsies, consultations, labwork... it just goes on forever.

Blah, blah, whine, cry, meltdown. Welcome to Cancer Town, the place of nightmares. Where did the old me go? I want her back, please.

Anonymous

oh you poor darling. How awful LW.

So unexpected I'll bet. Sounds horrendous.

Gee, let's hope it is nothing too sinister.

Uggh!

Does this mean they found no evidence of spread in your scans so far? I hope so! I mean apart from this uterine news.

🙏💟

LW422

Hi Astrid. Thanks for the emotional support; I feel like everything in my life is out of control right now. On the off chance that I have cancerous or pre-cancerous cells in my uterus, they will remove it at the same time as my mastectomy... so a real party! Neither the oncologist nor the gynocologist believe the uterine thickening has anything to do with my breast cancer, so at least I'm spared the "mets" label ... I HOPE.

I have a history of uterine polyps so they are speculating that this is "just another" so I will have to hang on to that, though I suppose I really don't care whether they remove my uterus or not. One less useless organ to worry about.

I'm sorry I'm such a downer these days. I hope you are doing well, and thanks for helping me through this ugly maze.

Anonymous

yeah, it does sound like a seperate issue for you but not what you would want to go through right now. I would think crying and wailing is a completely sane response at this time in your life.

Time to treasure tiny victories as they come.

Moments shared with your husband, time out from your 'job' anf its endless apts, and rollercoaster meetings...just stretching out small moments of peace and quiet.

Chemo is do able and hair does come back.

You are close to knowing exactly where your body is at...so far it seems maybe no spread, which is worth celebrating.

We are all here for you LW. Hang in there. Small steps.

💟🌺💟

blue22

Hi LW,

I wanted to check in and see how you are doing. The Uterine biopsy does not sound like fun. I have also had uterine polyps, and had to have them removed ~ 1 year before being diagnosed with IBC. Interesting coincidence...

I'm glad the port surgery went well. My surgery went well, but it did bother me for months until suddenly it was like it wasn't even there anymore and I didn't notice it at all.

Hope you have a good weekend!

blue

wrenn

LW, Your self reported "debbie downer" posts help newcomers see that they are not alone. This stuff is not a picnic. The more honest and open everyone is with describing what they are going through the more it helps the community.

My endometrium always seems to be thick. After 4 biopsies I am done having it checked. Luckily I was not awake for the biopsies and can't imagine tolerating it 'live'. yipes.

MinusTwo

Just chiming in to say - you have permission to take the weekend off & do something fun. Yeah right, except there Covid. Oh well. Hope you can find some things to distract your mind from cancer.

Wrenn is right. Tell it like it is!!! And it ain't all roses but we move forward.

Sounds like they're talking about taking the uterus and leaving the ovaries? I'm guessing because you're not ER+?? Losing my uterus was the best thing I ever did. Can't figure out why I didn't agree sooner. But I hope they can so a vaginal removal so you don't have another area to heal. If you don't want both surgeries at the same time - remember it is YOUR choice.

LW422

Astrid--you are always so comforting, and I appreciate every comfort these days. I was just thinking back to December and how "a small cancer victory" was the farthest thing from my mind. My, how times have changed.

Blue--I was thinking about you earlier today. How's it going? I feel like all I do is talk about myself; I seem to forget that all of you are fighting your own battles... yet you take time for me. It's such a blessing.

Hi Wrenn. So nice to hear from you. You are so right; nothing about BC should be sugar coated. The emotions are raw and they are real.

I have had a uterine biopsy in the past (2012) and I still remembered how much that hurt. So I knew it was going to be unpleasant but I didn't count on it being such a damn horror. I will never let them do that to me again unless I'm sedated.

Hey there -2! Isn't this weather just peachy? I have been cold all day and the rain just makes it feel colder.

I assume they'll take the uterus vaginally if it needs to come out. Neither doctor seemed particularly concerned about it one way or another, which makes me wonder how much of this stuff is just a money grab. (Yeah, I know I'm cynical but I guess I'm entitled to be.) If they decide to remove it then doing it at the same time as the mastectomy will be fine with me. No mention of the ovaries except that they are pretty much a non-issue since I'm way past menopause.

wrenn

If the uterine biopsy is benign I would be tempted to leave it be. Ask them what the recovery will be like if they decide to remove. I find it hard to hurt in two spots.

That said I was shocked to only need plain tylenol the day after double mastectomy. I hope yours goes smoothly.

LW422

Wrenn--I'm sure if it's benign they won't remove it. They might decide I need the polyp removed or a D&C, but that remains to be seen and won't happen until my BC treatment is complete. Guess I'll find out next week.

Anonymous

Hey wrenn,

I remember my b.s. told me she put anaesthetic in with the wound stitches. I think that helps for awhile after. I just remember the 3rd(or is 4th) day blues. Nurses said it is very common.

wrenn

Astrid, that sounds familiar. I might have been told that too. It seemed so strange to not hurt. :-)

blue22

Hey LW how are you doing?

I remember I was very nervous/scared before my first infusion. In addition to the chemo training I had with a nurse a day or so ahead of time, I had take home reading about the possible side effects of the clinical trial meds. One of the rare side effects of the trial drugs was downright terrifying, sounded worse than death. Luckily my MO was very patient and talked me through everything at each step of the way, including explaining that the side effects in the paperwork were extremely unlikely. I was also lucky to have great nurses who were also very patient. It was actually quite easy. They gave me pre-meds that made the whole procedure quite tolerable.

Wishing you good luck!

Blue

MinusTwo

LW - good luck tomorrow. We'll be thinking of you.

LW422

Hey Blue. I posted yesterday in the February Chemo thread... I am very anxious and somewhat annoyed that I'm supposed to have chemo on Tuesday but have had NO information about what to do or what to expect on that day. I'd think that an organization such as MD Anderson would make sure that cancer patients are properly instructed in such matters... such as should I take my prescription medications, what to bring, etc. How great that you got instruction from a chemo nurse; something apparently I DO NOT receive, about such a stressful event.

I sent a message to my MO but he hasn't responded. So right now I'm anxious about the chemo, but extremely irritated that I feel I'm not getting sufficient information from people who are supposed to be guiding me. I don't know if they dropped the ball, but it does not give me a good feeling.

Sorry if I sound cranky, but I'm pretty irritated. I appreciate you checking on me and your good wishes. Thanks very much.

LW422

Thanks, -2! My chemo is Tuesday but I'll take all the positive vibes on any day!!

sbelizabeth

I had no instruction before my chemo started either. During my first infusion, a nurse sat down with me and spent about 45 minutes going through a teaching packet and giving me a chance to ask questions. Still, I agree--some information beforehand would be better.

There wasn't much I typically brought to chemo. I have a cozy "nap" blanket from Brookstone and I brought that to all the sessions. They had blankets there, of course, but I liked having my blankie with me.

LW422

Hey SB. I'm more concerned about whether I should take my blood pressure medicine as usual and that type of thing. I don't want to find out when I get there that something I did will cause the treatment to be delayed or rescheduled. I'm such a bundle of nerves that it doesn't take much to set me off these days.

I'd like for the monolith of MD Anderson to realize that there are PEOPLE being treated there, and a little humanity would be nice.

As always, thanks for your comments; I appreciate the help.

sbelizabeth

Hi, LW422. I don't think I've heard anyone, either in real life or online, state their chemo was delayed because they were taking their blood pressure medicine. I can't think of a reason most of the medicines we are frequently prescribed would interfere with chemo.

That being said...YES, MD Anderson should include, in that vast cancer treating machinery of theirs, a simple handout that addresses what to take/not take, what to bring/not bring, who can drive themselves, who should bring a driver, stuff like that. The absence of such a handout probably means it hasn't occurred to them, and they figure they can do all the appropriate teaching at the first chemo session.

The nurses in my infusion room were kind, compassionate, skillful, and friendly. If you suggest they provide a pre-chemo flyer for patients anticipating their first round, your own nurses might leap at the chance to be helpful.

Let's raise a glass to Tuesday! It's the day when the grand plan is launched. I bet this whole thing feels like a huge, interminable unknown. For me, anyway, it felt better when it all got started and I could begin to click off the days and months until it would all be behind me. I hope it's that way for you, too.