Lumpectomy Lounge....let's talk!
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Dara, got that right. Crystal balls definitely needed. That's hard with that sad anniversary coming up. Keeping you in my thoughts.
HUGS!
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KD- Wow, what a reaction! So sorry you had to endure that, and happy you have recovered. I actually love the look of your new wig...it's fall now and even for people who color their hair, colorists many times go shades darker in fall. You are a beautiful woman with classic features. Maybe a little mor blush and a bright colored fall sweater (or scarf) can help you feel more like yourself when wearing it.
Michelle - Congrats on the low onco score!!
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Sandy,when we went to England in 2012, we just did the regular walk through everything, but coming back, the London/heathrow airport is like you mentioned yours was... we found a handicap section and while we had to wait there, they took us (me) to the door of the plane in a wheelchair and met me at the next 2 locations with a wheelchair and got home, right through customs with the wheelchair right to our luggage... I didn't have to walk much at all.. you might check that out.. there should be a handicap section in most airports.
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Hi KD, That is supposedly for one any old day. The minimum amount for your size is 75 oz or 2 liters.Or you could go with the old standard of 8 glasses of 8 oz of water per day. That works out to 2 liters per day. Also remember Caffeine is a diuretic, so you need one glass of water for each cup of coffee you drink For Electrolytes, try eating Bananas. They replace them pretty quickly. I usually eat fruit during my sessions so far and drink water.
Love the wigs too. Personally, I have not purchased any. I wear dewrags and baseball hats.
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MIchelle, nobody’s “tweaking” OncotypeDX scores. The TAILORx study is massive and official, and definitely ongoing. The results for the 0-10 group of women over 70 were so overwhelmingly anti-chemo that they stopped gathering more data in that subset and released it as definitive (it’s the equivalent that if it were a separate study, it would have been stopped early). You are correct that the prognostic/predictive report that came with your ODX report did not factor in radiation, because it assumed that surgical treatment was either lx+rads or mx alone (both are standard-of-care)—almost nobody gets lx alone, and relatively few get mx+rads. The survival outcomes for lx+rads and mx alone are equal. And the difference in ipsilateral recurrence outcomes are 6% for lx+rads vs. 3% for BMX alone. I suspect that the difference between lx+rads and UMX is even smaller. Also both surgical outcomes assume adjuvant therapy appropriate for the tumors’ histologies and other characteristics, as well as absence of nodal involvement.
I rarely use a wheelchair when flying domestically without my cane (especially for arrival) unless I am carrying on a guitar or dealing with an injury—the corridors (especially at Midway) are shorter and there are no passport control or customs lines. If I am carrying aboard a spinner suitcase, it’s almost like a walker or rolling cane! If I am carrying a cane (because my checked bag is too small to contain it), I am usually offered a wheelchair—and never decline the offer.
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I have been researching the TAILORX study and the STAR study. The current standards with Oncotype are the ones that I choose to use until they are changed officially. At a 14 out of 100 RS,and a 9% risk of recurrence with a SERM, I would not consider myself as an intermediate risk individual needing chemo. My radiologist, who went to a top school and was connected to the person who created the radiological implant, gave me the full rundown on benefits and risks of the different treatments. I think what we choose to read, believe and do, has to fit with our comfort level. Three months ago, even two months ago, if someone would have told me I would have a lumpectomy and need radiation, I would have thought that person nuts. Remember, I am an incremental person, who can only take bits of information and change at one time.
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Kd, I love your wig. It looks quite natural. Maybe you just need to give it some time. I didn't love mine right off the bat, either.
I'm another one who bought a good quality synthetic wig. My DH actually picked it out. I was looking for something to match my hair--brown w/ about 1/4 silver in the front. Yeah. They don't make them in that color (oh, I could get a BLACK and silver all day long, but not my medium brown with silver.) So, the shopkeeper steered me toward wigs that were similar to my style first, and then decide on a color. Well, the one style that looked great on me happened to be strawberry blonde. Oy. I stopped dyeing my hair in 2007, so I thought it would look ridiculous but it didn't. and my DH LOVED IT! I took the wig off and tried on some others, but I kept coming back to that one. And truly, the color made me look so healthy and fresh.
I got about 1 mile down the road before I got serious buyers remorse. Strawberry blonde? Seriously? What was I thinking?! But my dear dear husband solved the problem. We went to Target and bought some hair dye, came home and dyed my hair strawberry blonde! On Day 17 when my strawberry blonde hair fell out I was ready with my new strawberry blonde wig. Of course, my close friends knew, but most people did not. I had several people at church ask me whether I did it myself or went to a salon (LOL, salon...)
I grew to love that wig and I wore it anytime I left the house, except for chemo days--I figured I wasn't fooling anyone there! The strawberry blonde wig is officially retired now, but I will keep it "just in case", ya know?
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Poodles, what a great solution to the color mis-match! Smart of you (and DH). Maybe you can wear it some Halloween.
HUGS!
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My Part B supplement is also BCBS Medigap Plan F. Bob’s Part D is also BCBS, but he told me it wasn’t the best plan, but cheaper & good enough because he took only 3 prescription drugs. (Then came his two surgeries—add painkillers, antibiotics…). So when it was time last Oct. to pick my own plans, our agent & I sat down in front of the computer to compare formularies & lists of pharmacies, and in Cook County, IL Humana Enhanced had the biggest list of both.
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Amazing how different the Part D plans are, isn't it?
HUGS!
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hi everyone. Just stopping in to say hi and to let you know I am doing ok. Look forward to catching up with everything
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NDGrl, nice to hear from you. Please update us on all your doings! Glad all's well.
HUGS!
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Poodles, you said you retired your wig. I see it's been a year since you started chemo. Do you mind if I ask how long your hair is now? I'm trying to determine how long I"ll be dependent on a wig, scarf, etc.! My last chemo will be Oct 10 yaaayy!
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B"H
Okay, after a long and complicated wait for the Oncotype results, which delivered the decision to forego chemo at this point (yah!!!) I went this morning to do the simulation at the radiation clinic.
I am SOOOOOOOOOOOOO grateful for so many things, surely happy that I don't have to go thru chemo - and my heart goes out to all the women who are doing it - -
so i should be happy right?
only until now, the BS and the MO and all the nurses and technicians for the millions of tests and scans etc etc I have been through have been so kind, patient, willing to explain everything and caring
and the RO this morning was not.... and even though the technician who "marked me up" was incredibly kind and gentle and respectful - i got so sad, trying to remember who i was and what my body was only three months ago...
and being told over and over that RADS is "nothing" is driving me nuts... i mean' i know that in many ways that is really true and i am very fortunate.... but hearing from people who are NOT going thru this that "the only hard part is finding parking at the hospital" is really hurtful to me.... if any one HERE would say it i would just be grateful for the encouragement and smile...
but "outside" of this "refuge" hearing that it is nothing, and that BC is so common its just like "getting over the flu" is getting to me......
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yay, Dara! Only 12 more days! I know you can't wait.
I finished chemo Dec 18, 2015. I wore my wig and little hats until March 30, when I had to fly to San Diego for a week-long conference. I figured nobody would know me there or care about my 1/2" of fuzzy hair. That was just freeing! When I came home I packed away the wig. It was still pretty breezy here, so I kept the small hats until May. By then, my chemo hair was weird enough to need a shape-up. Once it was trimmed a bit. I felt more comfortable leaving the hats behind, too.
It's late September now and my hair is probably about 1-1/2" long. Hard to tell because it came back thick and curly, unlike my usual fine, straight-straight hair.
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Thereisnodespair, I'm so sorry your RO doesn't meet up with expectations set by your MO. Are there any other ROs available? I too get really frustrated when someone says, Oh it's a piece of cake, whether they have had rads or not. As with everything with bc everyone is different. We certainly hope radiation is a "piece of cake" but even if SE are minimal, it's still a daily bombardment of radiation to your body. I had been on the July rads thread and heard of the difficulties so many women experience. The worst appears to be fatigue. Just like chemo, it's all doable, but there is always a price and we need to take it one day at a time. Have you been given some info on over the counter creams or ointments recommended for your skin? The thread had a number of suggestions and I've already stocked up on many. BUT, the very great news is that you don't have to do chemo! Yay and Congratulations! What did your number turn out to be? I think from now on when people say stupid things about any cancer tx, I'm just going to smile and stare, and say nothing. Maybe they'll rethink their words!
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Hello Ladies,
I had a lumpectomy on September 26 and doing well,
This is a great site, i have learned so much.
Love to all,
Debbie
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This is not a great picture, but it is recent. I am 9mo PFC today. And it's my 60th birthday.
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Beautiful Poodles! I love both the color and the curl! I can't wait!!! And HAPPY BIRTHDAY! Celebrate big
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Poodles, you are looking FINE! So pretty. HAPPY BIRTHDAY!!!!! How's Seattle??? Have a great time.
ThereIsNoDespair, don't let that RO throw you off. Or put you off. I had virtually no SEs from radiation. I suppose fatigue but I never was able to distinguish that from the sheer exhaustion I had when starting rads. I had minor redness. Nothing else. I started using Aquaphor at about the 17th treatment when I was told to use it. I still use it occasionally but not regularly. No one knows how their body will react to radiation. Some people sail through like I did. Others have huge problems. I hope you will sail through. Use the products they tell you to use. I went braless throughout. It was fall and cool, plus I'm small busted, and I wore sweatshirts (possible because I am retired).
TwinsMawMaw, glad you are doing so well!! Remember to not over-do, do the exercises to stretch out your underarm and ice regularly. It would be so helpful if you would fill out your profile and make it public so we know your Dx, Tx etc. We can't remember and having that in the signature line reminds us. Isn't this site wonderful?
Dara, don't let the rads thread stories frighten you. Remember most of us have manageable (or no) SEs. I'm not saying that people don't have awful reactions because you've read them here, too. Just like you are coping with chemo and its SEs, you'll get through radiation - we are KILLING CANCER and, to me, that is paramount. Bet you can't wait to get that last chemo over!!!!
HUGS!
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Seattle is great~ Actually, I'm in Poulsbo, an old Norwegian town on the west side of the Puget sound, out in the country. Yesterday we had fish & chips in town, followed by a trek to Sluy's bakery for pastries and Viking donuts (they're as big as your head.) I don't think we have stopped talking since I got here.
My sister has a small hobby farm, called "Fat Sheep Farm", with 14 fat sheep, chickens, apple & pear orchard, and a vegetable-herb garden, all of which supply nearly all their meals year-round. Everything is grown organically. She cans EVERYTHING, including the fish they catch (now That's a stinky operation!) Right now she has two lambs named Lunch and Dinner, LOL. Two years ago, every one of her ewes dropped twins, so she had 26 lambs. That was a banner year. There are several Muslim and Greek families in the area who come to her for their holiday needs (read: protein). Her sheep are grown with love and care, and when they are put down it is done in the most humane way possible. If animals are in fear before slaughter, it causes the meat to taste different because of the hormones and enzymes released. Her lambs never even know what's coming. She even takes the ewes into the back pasture so they can't hear or see what's happening.
Today we are headed to Leavenworth to get our Oktoberfest fix. I'd go to the apple orchards, except that she has about 100 apples and pears from her trees, just waiting in her fridge. This weekend we are debating going to an SCA event--they do medieval re-enactment as gentry-folk. The clothes she makes for them are outstanding. She even makes her husband's coats and pumpkin pants. If we go, I'll wear simply woolen garb and attend as a penitent on pilgrimage. Penitents were known to cut their hair, as an offering to God. She and I will take our needlework projects, while her husband participates in the archery competition (he's actually quite good.)
I'm having a grand old time, even though I have to work. But I'm grateful that my organization is willing to let me come out here before I start on my second round of surgeries (DH is scheduled for incisional hernia repair 10/6 and I'm scheduled for a full hysterectomy 10/20.) I sooooo need this vacation.
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B"H
DaraB - thanks so much for all the encouragement! My oncotype was 12 and so it was decided not to give me chemo..... while doing all the tests and scans before surgery for BC' it was discovered I have low-grade lymphoma.... right now is it thank G-d just "watchful waiting", but I was told it is good I don't have to do the chemo now, because may along the way I will need it for the lymphoma,,,, ) and i have been reading all you have been going through....my prayers are with you!!!
mustlovepoodles - HAPPY BIRTHDAY!!!! you are beautiful - and young! cuz tomorrow is mine and i will be 61, so you're just a baby....
Pontiac Peggy - as always, with the encouraging words! the RO said not to use any creams WHATSOEVER!!! (not exactly what I have been reading here) .... and that I can continue any medication I am taking (including starting the hormonal treatment tomorrow...) and any food\vitamin supplement (not what I have been reading here) ... thing is, I trust the women here a lot more than the doctors.....
thanks all!!!!
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Poodles, I'm so glad you are having fun. Your sister sounds so talented. Making those costumes has to be difficult. And all that farming! Wow. Nice to be able to combine work and great pleasure!!
HUGS!!
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ThereIsNoDespair, I know what you mean about trusting the gals here. it's very difficult when you don't connect with your RO and thus don't trust what they say. Use Aquaphor after each session and at night (not before your session). Most MOs here seem to prefer to start anti-hormonals after radiation but several gals have done both at the same time - must be a matter of the MO's preference. I don't know about the supplements. The only supplement I took was Vitamin D3. I would listen to what the ladies have said about that and then see if it fits with what you believe. Good luck!
HUGS!
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Peggy, the funny thing about my sister is that she was most uninterested in anything related to farming or sewing when we were growing up. She's 6-ft tall, so my mother made all her clothes. DS refused to learn to sew because she planned to marry a rich man and buy all her clothes, LOL. She majored in Chemistry & Environmental Science and became an asbestos inspector and metallurgic scientist in DC for awhile. Then her DH got transferred to the west coast and all of a sudden she wanted a little bit of land to put a horse on. The horse led to chickens & ducks, which led to the garden, which led to the sheep. Obviously, I think she is brilliant!
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Poodles, that's funny! At least she found her passion. So many people never do. Too bad about not marrying someone rich
And of course you think she's brilliant - she is! I'm worn out just thinking about all she does.HUGS!
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Poodles, happy birthday--you look great! And an advance happy birthday to thereisnodespair. I pretty much sailed through rads too, except that my seroma swelled and I got some fibrosis (since reversed). My RO told me to start using Aquaphor right after the first treatment (even gave me a bagful of samples). Just don't put anything on your skin w/in 4 hrs before treatment. I showered beforehand, which got rid of all the stuff I slathered on at bedtime
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Happy Birthday Poodles! Going to see my BS to get released for radiation. Got my calender out and marked off 16 treatments plus 4 boosts. Has anyone else done the shorter radiation? How did it go?
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Thereisnodespair, my MO was adamant about not doing any supplements during chemo, especially any antioxidants, but I don't know yet about rads. With the chemo, he said many supplements help build up the cells, and while on chemo, he didn't want the cancer cells protected. Almost every single person I've heard about recommends aqufor during rads. Again though, I'd ask as many questions of your RO and don't rest until you get answers. I always go in with a whole list of written questions. I'd take points from here or research I'd done and then form a ton of questions ahead of time.
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Dara, that's what I did too. I researched, read (esp. here), wrote down and asked tons of questions.
BTW, I had my 2 year AI DexaScan follow-up. It showed no change. Just mild osteopenia in my left hip which I had before I started. So staying on Fosamax. The MO was kind enough to call me himself on this. I think I got lucky with my choice of MO here in Spokane.
HUGS!
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