Lumpectomy Lounge....let's talk!
Comments
-
Katzpjays, my very first date was definitely not computer or phone savvy and I was dismayed. Still using a flip phone and just barely able to turn on his computer. His almost ex-wife did the computer thing. It was not a plus. My dear husband was a flip phone computer -phobic man. It drove me crazy. I need someone a little more 21st Century - like your mother is! I'm not sure I'd want MY mother reading my email (though not likely to happen since she has been occupying Heaven for 26 years
). I do love that story!HUGS!
0 -
At almost 67, Bob still mourns the loss of his flip “dumb phone" (heck, he misses that old “brick" phone that tore his blazer pockets). But Christ Hospital (his main hospital, and the one to whom he'll soon sell his practice and become its employee--less money but sane hours) insisted that all doctors transition from beepers to the text app PerfectServe, get a cloud account (for him, iCloud) and the Advocate Health System app. He had a rough patch downloading it, because he hadn't updated his OS and the hospital had too weak a cell and wi-fi signal, but he was able to download both the update and app at home (while Gordy & I were out at the Pearl Jam concert). He has always been texting-phobic, fretting that he was constantly fat-fingering the onscreen keypad (he does have big hands). I bought him styli but he never used them because he didn't want to carry too much stuff. But yesterday, the nurses in the CICU bought him a pen with a stylus tip--so he has joined the 21st century. He has always loved his Kindle; couple of years ago he upgraded to a Kindle Fire with wi-fi, and when we travel he uses that for internet.
Years ago, he didn’t even know how to use e-mail--he insisted on giving the hospitals and medical listservs my AOL e-mail address. it was a major coup to get him onto AOL with his own address; but except for the hospitals, the senders ignore my pleas to change to his address. So I still spend half my e-mail time forwarding medical-related stuff to him.
0 -
Katz, loved, loved your story about your mom stumbling into your email. So funny, not to mention adorable. You and your sister were like teenagers texting each other in your mom's presence - that made me laugh right out loud! Some things never change, just the technology.
In answer to your question, my mom and dad downsized about 25 years ago from our family home to a smaller house, and it's from that house that she's transitioning to independent living (my dad passed away 8 years ago). It was her choice to make the move now, actually, because she felt it was time now that problems with her health are finally beginning to emerge -- she and I and my brother had toured a few places for about a year and a half before she decided it was time to make the move. While it's still 90 minutes away from me, she's only 20 minutes away from my younger brother, so that's terrific - and it's all highway driving for me now, so that's good. This place is really beautiful so she should be quite comfortable and, as you said, she'll make lots of friends at the same stage of life. She's still close enough to her hometown that her friends can visit (they're all "younger" -- in their 80s). All on the same property she can transition from independent living to assisted living to long-term care. I couldn't help but chuckle with my brothers when we toured because it wasn't lost on me that independent living is on the eastern side of the property with long-term care on the west - yep, they go off into the sunset.
0 -
My DH is a technophobe as well. He still has a regular cell phone but I insisted on one with a keyboard so he can text. Then his boss got all the staff iphones but he only uses it for calls and texting. Computer stuff is painful but he slogs along. If he works from home I have to walk him through sending emails with attachments. It's funny because in the early days of our relationship he was the expert in all things radios, TV's and VCR's. Technology changed too rapidly for him and since my job is technology based I had to keep up. My son does most of the set up at home because I just don't want to. Lol.
Sloan, glad you are returning to normal life. Grazy, so sorry about your mom. If I missed anything sorry!! I am adjusting to working all day again.
0 -
lmencken,
When I first saw my MO after surgery, my pathology report gave us ER+/PR+ but HER2 inconclusive. My MO decided to order a Onco test, but it was taking a long time to come back.. I decided with the information that I had at that point not to have the Chemo and just go with the Radiation. However when I went to my appointment with the RO he refused to start treatment until I had talked to my MO.. I told him I had been trying to contact them, but was getting no returns on my messages.. So he sent his nurse up to their office and got them to see me before I left the hospital that day. It turns out a FISH test had been done and it found that I had the HER2+ receptor. That changed everything. In Canada, the government requires Chemo if the patient is going to be required to take Herceptin. So we made plans for me to start Chemo.. The day I went to the hospital to get all the paperwork and the prescriptions, my MO gave me the results of the Onco test which turned out to be 16.. I am doing the Chemo anyway as the FISH is the golden rule for HER2.
It was explained to me that you can get different readings off of one tumour depending on the site that the sample was taken.
Do some reading on this site about the receptors. This is what determines the type of treatment you will receive. ER+/PR+ usually get a Hormone Treatment for a minimum of 5 years..
HER2 + will normally get you Chemo for a fixed period of treatments and Herceptin infusions for a year.
These two treatments are to insure the cancer does not reoccur in another part of the body.
Radiation of the breast is to kill any remaining cancer cells to insure it does not reoccur in the breast.
Normally, Chemo is required before the radiation... at least that is what my RO has insisted upon.
As it sits right now I have Chemo every two weeks for 8 sessions for a 16 week total [4 Sessions of Adriamycin PFS & Cyclophosphaminde (Procytox), Then 4 Sessions of Paclitaxel (Taxol)]. The Herceptin will be added with the Taxol starting the last two sessions and then continuing for a year alone
I am also injecting myself from Day 2 to Day 8 after the Chemo session with Neupogen. This is to help boost the immune system.
After week 16, I will be starting a 3 or 4 week period of radiation that will be 5 days a week for the duration. TBD.
I am not sure, but I assume once the Chemo is finished, I will also be starting the Hormone therapy.
I hope I have not confused you too much... ASK your doctor, if the FISH test was done and the outcome.
AND READ THIS SITE... it really helped to make sense and gave me new insights into what I was being told.
0 -
Chemo before radiation makes sense, because chemo will kill many if not most tumor cells in the breast along with those elsewhere, and radiation will finish off the rest. But reverse the order, and tumor cells in the body can still proliferate while you’re taking care of the ones in the breast first. At least that’s what my treatment team told me (before I found out I wouldn’t be needing chemo).
0 -
Katz, love the email story! Funny!!!!
Peggy, Grazy, Poodles - thanks for sharing your caregiving/transitioning stories. You have all gone thru similar struggles while dealing with your bc and I'm grateful for your support! HUGS!
Dara, cutest granddaughter ever! Hope you are doing ok today.
Molly, hope returning to work goes smoothly and you don't do too much.
RO wants me to just stick with slathering on Aquafor for the sore nipples. I've been using it sparingly since I hadn't had a chance to talk to doc about it. Put on thick this evening and it already is more comfortable. Thanks for all suggestions. I'll keep them as backups!
Hello to everyone else.
0 -
Beeb, if you slather on the Aquaphor after your rads session, make sure you have a pad in your bra because that stuff does get on your clothing. A handkerchief or a t-shirt. Whatever feels comfy. I never used much Aquaphor but I did use it. Hope it does the trick for you.
HUGS!
0 -
Sandy - your post made me laugh. My dad is a flip-phone guy, and when he lost his phone, we had to search around to find another flip phone so he would know how to use it.
0 -
Grazy and Katzpjays ....how lucky for you both that you were not awake to have that dye injected!! Our new hospital had just opened so everything was delayed due to an issue in the OR. I was to use numbing cream for where the injections were to be. Of course it had long wore off but I really don't think it would have mattered as it was the dye itself that stung so much. I guess I will ask my BS next time I see him if this smurf mark will ever be gone. From blue pee to red pee with chemo, it's been an interesting ride!
I find that I feel better every week now. The tiredness is starting to leave me a little more each day.
My mom is 89. Will be 90 in 2 months and still lives on her own in a large condo on the lake. I read some of your stories here and sure can relate!!
Peggy I just had to read all through the threads earlier to find out about your date! I've been alone 5 years or so now by choice and I don't know if I will ever want to get back into a relationship. I enjoy my life and freedom too much now. Never say never they say though!
Take care of yourselves everyone! Sleep time
0 -
The last flip phone I got for Chuck I found on Craigslist (no, my youngest son found it). $10 and I made the guy meet me at Verizon to make sure it would work on our network. Chuck was happy with it. He had big hands and found most phones difficult to dial.
HUGS!
0 -
Karen, I don't know what relationship I might consider but I do know I would like to have a man to do things with. I also like my life, am very happy and don't really want to share my house with anyone besides the pets. I'm rather surprised at myself because I figured I'd re-marry if the time ever came. Now, I don't think so. So we'll see if I can find a companion. I have another date - Starbucks at noon - tomorrow. Whee!
HUGS!
0 -
GREAT NEWS! I finally got the call (a week and a day after my lx surgery) that my 4 nodes and margins were all negative - so that drops me down to a Stage 1A (for now). Next is oncotype testing, so it is great that you all educated me on that a few days ago! Now I have to wait (again) a couple of weeks to find out what my oncotype score is - to know if I do chemo, or just move on to rads. I also got my BRCA1 and BRCA2 results back today - negative! Whew. Good day for news!
Lx scar seems to be doing good. No blue smurf boob going on, but I did have blue pee for a day or 2 after surgery. Surgeon did say that both my masses were similar sizes 1.5 and 1.6 - but 10cm apart, so I have a 4" scar along the top and side of my right breast. Thankfully, she was able to get both masses, along w/my nodes through this one incision.
Guess I could have gotten the reduction/lift after all...but I wanted to be sure. No regrets though...and so thankful for this group, along with the tons of family/friends who are praying and spoiling me rotten (which at times, I feel guilty about...cause so far - I am really doing fine. I wish they would stop giving me gifts and being so worried about me! lol).
0 -
kdtheatre!, great news. It's hard to wait for test results. Isn't the knowledge of this group awesome? Enjoy the pampering!
HUGS!
0 -
kdtheatre - congratulations on all the great news. Whew, what a relief!
0 -
kdtheatre, great news all around!
Zometa refuses to “play nice" with me.
First of all, not counting the blood draw for the lab test yesterday, they had to stick me four times (even with the help of the AccuVein infrared lamp) before they could find a large enough vein whose valves didn't block the IV. I asked the lab to start the IV and leave a catheter in there so I would only have to get stuck once, but Dracula-Lady refused, saying that she can always find the vein and therefore so could the infusion-suite nurse. (And, per the subtext of her grumblings, how dare I be so inconsiderate as to not have a port like all the other breast cancer patients)? What should have been an hour wait for the lab results and then 15 minutes in the infusion chair took an entire afternoon--between the lab taking an hour to even get to my blood sample for testing and then having to re-centrifuge it and wait another 20 minutes for the result (a test that wasn't even necessary, since my Ca levels were the same as 3 weeks ago--a blood test they claimed was “stale"), the pin-cushion marathon (requiring a nurse and the vein team) for the IV, a 20-minute wait for the pharmacy to send up the Zometa (meanwhile, they were pumping me full saline so I had to keep getting unhooked to go to the bathroom), the 15 minutes for the infusion itself (the second half of which burned in rhythm with each drop of the drip), and then the 15 minutes it took to get the venipuncture to stop bleeding and to bandage up all the failed attempts (with a bruise for each one), I was ready to say “never again." Hah. Little did I know. (And to add insult to injury, the combination of a four-hour visit a long line in the lobby, a finicky parking-ticket-reading machine, and a woman in front who had her first three credit cards declined, I got socked with the “all-day" parking rate, two bucks more than I'd ever had to pay there. And I was finally out of the discount tickets they'd given me during rads). So I went and consoled myself with a slice of wicked-good dark chocolate cream pie at Hoosier Mama. It was worth the guilt, sugar shock, and subsequent “hypoglycemic crankies." Late night dinner was a caprese salad, a bottle of seltzer and some tortilla chips. No wine, though. Pacing myself for the week.
Per my request, both Bob & Gordy brought home Claritin for me, to stave off the expected bone pain. I took one about 9:30 pm instead of my usual bedtime Zyrtec--and will do so for the next week. Popped my usual bedtime combo of 1/4mg. Xanax and a couple of arthritis Tylenol, watched some TiVO'd stuff till I got sleepy and went up to bed. After a couple of hours of tossing & turning so my sinuses could drain, I was awakened not by bone pain or my usual arthritic knee and hip aches, but by what felt like a bee sting in my foot (but not in the location of my heel spur). Rubbed it with Voltaren gel, went back to bed, and then got a cattle prod to my knee. Rolled back over and was promptly zapped, successively--in my boob, shoulder, knee, heel, both hands (especially my trigger thumb)--lather, rinse, repeat. Felt like a visit to Gitmo without the waterboarding. Bob, who was up to use the loo, heard my whimpers and gave me a 7.5/325 Norco from his stash left over from last summer's surgical adventures. He also told me to ask for a Lyrica script. I came downstairs to text my housekeeper, eat an early comfort food breakfast of Special K, milk & raisins, and await “the drowsies."
Because I have an 11:30 followup appt. in Skokie with my hand orthopedic surgeon, and would never be awake & alert in time to drive myself, my housekeeper has agreed to drive me up there & back (and save myself both the Uber fare and need to make small-talk with the driver). I'm gonna tell the orthopod I want the trigger-release surgery, instead of (or in addition to, if he insists) yet another futile cortisone shot. And of course, a prescription for Lyrica. Doesn't matter that my cheap-@$$ Part D carrier (responsible for this mess to begin with because they denied 3 appeals for Prolia) probably doesn't have it in its formulary, insisting I first fail three months of generic gabapentin--I'm already in the Medicare “donut hole" and unlikely to incur another $2300 in in-formulary drugs to kick me back out into the more generous “catastrophic coverage" (with another Part D carrier, one shot of Prolia would have dropped me into and back out of the donut hole). Bob says screw Part D--we can afford the Lyrica.
My MO is gonna hear from me. Between the side effects and the fact that just about all my usable veins (remember, my R arm is off-limits due to LE and cellulitis risk) are trashed--meaning I'll probably have to get a foot or subclavian IV for my upcoming cataract surgeries, not to mention if my orthopod agrees to trigger-thumb release--if that isn't considered “failing" on Zometa, I don't know what is. Unless inHumana defines “failing" as a spinal or hip fracture or intractable bone mets. My PCP didn't want me to take any bone drugs. My MO said it was absolutely necessary but could wait if I wanted till I could switch Part D carriers this Oct. to one who'd cover Prolia--but by the time my new coverage would kick in Jan. 1, they might have taken it off their formulary (most insurers are getting worse & worse about this, she says).
My Congresswoman and Senators are gonna hear from me too--Medicare needs to be amended to allow the use of discount & co-pay coupons that can be used by anyone else with insurance (or at least just during sojourns in the “donut hole”). With such a coupon, I’d have been out “only” $1100--instead of $5000--per Prolia shot. At 2 shots per year for 3 years, that’s a total cost of $6600 instead of $30,000! I shudder to think of what would happen were I to need Ibrance in the future....right now, that’s $9000 per month, for life. The Stage IV ladies in my support group--all of whom are too young for Medicare--get it for free. Me? I’d have to choose to exhaust our retirement funds to the extent we wouldn’t be able to leave more than a pittance to Gordy (should he still be unable to “launch”) when we die.
At least I don't have the faux-flu....yet. And I'm drowsy now but can sleep only a couple more hours before I have to get up, shower, and be driven to the ortho in Skokie. At least I scheduled this for a week when I have utterly nothing else planned till Sunday, so I can totally veg out.
And mine's the “easy" kind of IDC. I'm humbled by all you chemo and mastectomy/recon ladies.
0 -
Great news kdtheatre, so relieved for you! I love it when things work out like that, other than being initially diagnosed, I think post-surgery was the worst time for me, so I feel weight being lifted off your shoulders!
Grazy, Peg and others, I read a few of your stories regarding your care for husbands, aging parents and others while dealing with your own health. It breaks my heart to read about those, and I am grateful that you found comfort and support on this board. You are all very special people indeed.
I haven't kept up too much here, mostly lurking. Work is crazy, football season has started for the boys, and I am still in rads. So if I am not working, I am basically driving. But rads finish this week (yay) and the second Lupron shot on Monday, that's when I'll officially starte Letrozole. I am nervous, because I have been feeling terrible joint pain in my feet, knees and hands, especially when I first wake up. My neck is still very stiff too, the RO says no way that's rads. I posted on the January 2016 chemo board, but has anyone else gotten post-chemo joint pain? Does it go away? Joint pain shouldn't be an SE of Lupron, Letrozole on the other hand, does. FWIW, I am quite active, so feeling this kind of constant stiffness no from working out is new to me. I even ran a 5k in July two months post chemo and didn't feel these kind of aches and pains! It all just keeps on giving...
0 -
Sandy, My heart goes out to you for your terrible experience yesterday. That's criminal. Don't you love people who absolutely KNOW your body better than you do? After all you are a mere patient and THEY are the experts. Makes you want to go postal, doesn't it? And a hard kick to the balls of your Medicare D carrier. Drug pricing is terrible. I hope Congress finally gets its act together (okay I've had too much wine for breakfast to think such a thing) and lets Medicare negotiate drug pricing. That might help. BTW, I think Lyrica limits your alcohol intake (boo hiss!). I'm so mad on your behalf for all of this that you can sit back and relax.
HUGS!
0 -
Ugh. Just got some bills for my chemo and follow-up doctor appts. $150,000+. Now we're fighting with the hospital and our insurance, who are saying it's out of network. It's not. Every other hospital and doctor bill has been paid as in-network. In fact, I met my out-of-pocket last fall with the two lumpectomies and ensuing follow-ups. I had an in-patient stay and an ER visit with another hospital that my insurance has paid 100%. I have already told the offending hospital that I cannot and will not pay this bill. If it comes to is, I will pay them $10 a month until the day I die, but I wiil NOT pay them $150,000. I would sooner declare bankruptcy.
0 -
Poodles, what a crock of sh*t! Nothing like coping with cancer and then having to fight with the insurance company. I know that my son spent 100s of hours fighting to have things paid for that were covered when my DIL was going through colon cancer treatment (including chemo). Every day it seemed the insurance company would reject something they had paid for last week but not this week. It was almost a full time job for him. He got to be quite the expert. I think $10 a month is quite ample to pay them. I'd also consider bankruptcy too. What a pisser. I'm mad for and with you
HUGS!
0 -
Kdtheatre..great news..good luck with onco type!
Grazy, elizabethAM, Katzpjays ..thank you for your advice and information on your individual experiences...I am.a sponge and taking it all in...not such a newbie anymore thanks to you all!
0 -
LMencken, isn't being a newbie terrible? You don't know what you don't know and there's so much you have to learn ASAP!
HUGS!
0 -
Well, had my head buzzed today! Not as traumatic as I thought it would be. Thinking of it as the next step in the process! Had a good day, but exhausted now and have a headache!
Hope everyone is great! I'll respond/comment tomorrow! Hugs to all. Dara
0 -
Dara, somehow I'm not surprised you have a headache. Maybe from getting the hair buzzed off and/or you head reacting to not having hair. Or maybe just being stressed from the whole damned situation. Can you have a wine or 10? I'm glad it wasn't as traumatic as you envisioned. Perhaps it was just nice to know you weren't going to be finding clumps of it everywhere.
HUGS!
0 -
I posted this in the test results forum but after thinking about it I thought I should ask this group instead. 😀
I had two invasive tumors taken out in one "chunk" during my lumpectomy. I had some DCIS in the margins so I decided to do a DMX and remove both. Nodes were clear on both sides.
My Oncotype score came back as a ZERO. This is good news! But should I have had 2 scores? They were very close together and similar pathology.
My MO assured me to believe this score and take my Tamoxifin. When asked if it was for both tumors she replied, yes, I think it covers the entire specimen.
Anyone else have a similar situation with one report/score?
0 -
Dara- know you are exhausted but you sure look GREAT in that hat!
0 -
Traci, I'm not sure but I think that several different "spots" in your tumor(s) are tested for the Oncotype but I wouldn't swear to it. Most of us have radiation to kill stray cells which isn't necessary for you according to your MO. Maybe someone else has more knowledge than I do.
HUGS!
0 -
Dara... I'm sorry you had to shave your hair but glad to hear it's done and not as traumatic as you expected. I'm hoping you're headache free soon!
0 -
Traci, I think they take a bit from each tumor, grind them up and centrifuge them to assay the genes. So you’re good to go on to just endocrine therapy.
Dara, you ROCK that hat!!!!
I think I will have some bubbly first (if I have an appetite for the scallops I bought to sear tonight) and wait a few hrs. till my usual bedtime before I pop that Lyrica. (I had to pay full price because I’m in the donut hole now and my stupid carrier wouldn’t cover it even if it were in its formulary). One more hour till Claritin--yippee! (The faux flu has definitely kicked in--low-grade fever, headache, “full-body iron girdle” feeling; an espresso helped a bit with the headache, as I was definitely under-caffeinated today). Just hydrating for now--no real appetite Good thing I had that slice of vegan pizza for lunch at Whole Foods or I’d be hypoglycemic too.
0 -
Thanks Sandy and Peggy. My MO was so rushed last week I started second-guessing things.
Looking forward to the day when I stop thinking of cancer all day!
0
