Lumpectomy Lounge....let's talk!
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Dara -- I found this on the website here about vaccines. If I can get them I really will, but I will discuss it with my MO first.
http://www.breastcancer.org/tips/immune/helping
seq24 & 1step -- So far I'm feeling good. I still have the indigestion that started during Session 2, but my MO gave me medication for that. My low WBC is being addressed this time around by increasing the number of injections I will take this time. Instead of 7, I will take 10.
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had to make a reply to this... 'twining' my bd is 8/1 and my sisters is 8/2.. we're the same age on my birthday and the next day she is a year older.. we got a lot of 'twin' things...
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Well, IHGJAnn59, you are my diagnosis twin, girl. I do have twin sisters who are older than I am. My daughter's birthday is 8/3.
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Great news, Judy! (You, Michelle & I could be “diagnosis triplets”).
My vision is getting a little better and there’s little real pain--sort of a dryness and occasional “cat hair in my eye” feeling similar to when I tried to wear soft contacts. Being scrupulous with my eye-drops regimen: ketorolac (NSAID) 3xday, tobramycin/dexamethasone (antibiotic/steroid) and Durezol (another steroid) 4x/day; and for my left eye, artificial tears twice a day or oftener and a prescription antihistamine in the morning. Lens Crafters refused to swap out my right lens for a blank--they could put blanks in both sides, or just take out the right lens (and that would help me see better but look terrible, since i need to camouflage that hemorrhage and droopy lid till it heals). So what I did was Uber it out to the mall, buy a pair of light-gradient Ray-Ban Wayfarers for being in bright indoor light as well as public camouflage for casual settings, and a big bling-y pair of mid-gradient Ralph Laurens for evening wear till both eyes are done & healed (and I have an entire autumn of formal dinners to attend). The Wayfarers were fine as-is, but I wanted a slightly lighter gradient in the Laurens, which would take 2 hrs. So I hung around Old Navy and bought some T-shirt dresses (still an XL, not an XXL, whew), then saw some really wild shades (mirrored lenses, UV-treated) there for $15. Oh, well--maybe once both eyes are done and settled in, I’ll have prescription lenses (pseudo-bifocals: plain up top, morphing into readers on the bottom) put into the Laurens. I love my current frames, but I can’t wear them any more: the R lens is too strong now for distance and neither side is good enough for reading. I simply do better w/o glasses, especially for reading, but am not yet presentable w/o them. (Hopefully, by next week my R eye won’t creep people out and I will be allowed to resume using mascara and concealer). Toughest thing right now is to avoid bending over--I am working those pliés that were my undoing when I "committed attempted ballet” in grade school. (The teacher tactfully told my mom, “You know, she could always take voice or instrument lessons). And that reacher I bought for after my TKRs is getting a lot of use too.
Time for more eye drops. Gonna see if my stylist is in tomorrow--still not allowed to wash my own hair and after a couple of days it may be beyond dry-shampoo rescue. Thank goodness for black palazzos, tanks and floaty sheer jackets--change the jewelry & evening bag, and nobody remembers I’ve worn the same “uniform” at nearly every gala for the past 3 years. Besides, they’ll be looking at my mysterious sunglasses....
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ChiSandy, yes, we could be triplets! I was wondering if your eye issues were caused by the medicine? I am evaluating a couple of different protocols from the STAR study, Tamoxofen vs. Evista. Yes, Evista. I am taking an ssri and cannot take with serms. I will have to see how things go. My vision is perfect with the exception of astigmatisms and I don't want to lose any vision.
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Hi everyone,
I had my lumpectomy and SNB on Aug 25th surgery went well with very little pain nothing an advil could not take care of. Also my range of motion is almost back to where it was, it was at 180 before surgery and is at 170 now 2 weeks later.
I got the Path results yesterday from my MO the good news is the BS got clear margins. The tumor was 9 mm (was from core biopsy estimated at 7.6 mm), the grade went from 1 to 3. They removed 4 lymph nodes and found mico mets in one.
MO has ordered Ki-67 to determine if Chemo is part of the plan, she said I am in a grey area and she wants more info so the Ki-67 test get sent out and take a week for results to come back and MO is out of the office until
Sept 22. I asked if they would call me with the results they said no the MO has to discuss them with me I will not see her again on the 22nd. She is talking about 12 weekly chemo treatments and my radiation treatments have now gone from 16 to now 25 and from just breast to breast and underarm.I am sick to my stomach with this news, I have still not fully recovered from my last bout of cancer, I am still on a feeding tube from my last bout and am gaining on it but I am still only 102 lbs. and I don't think my little body can take both Chemo and radiation.
There are so many thoughts going through my head and I am so sick of being told to expect one thing to always have it after further investigation being something more. I have a feeling Chemo is going to be recommended and depending on the Ki-67 score and %'s I am going to have to decide on whether I will refuse Chemo and worry about it reoccurring or do I in all probability end up hospitalized during treatment. I spent last Dec and January in the hospital. Christmas in the hospital especially in the Oncology ward SUCKS!!!
I hate this disease and the decisions we have to make because of it.
So sorry this turned into a rant, but as supportive and loving my family and friends are.....they just don't understand and waiting another 2 weeks for the results of yet another test is driving me insane .
I know that everyone reading this can understand and relate in some way to where I am right now
thanks
Charlene
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Charlene1, I'm so sorry you didn't get better news.. I had the Ki-67 in my first biopsy and it was high, but guess everything else balanced out.. and the waiting is definitely the worst! I'm waiting to hear from the oncologists.. still have to get the appts. to start the next step
Triplets huh... I wouldn't wish this on anyone, but as long as we are all in the same boat..
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Charlene, is your MO planning on ordering oncotype Dx test? I am very sorry about your second bout with cancer.
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Seq, that's what I was told also by my MO, but it hasn't really played out that way. I found after my second round that the SEs I had the first time were less, but I had more stomach/intestinal issues after the second. I think everyone is different so I just take it one session at a time. I 'm on different drugs though so that could also account for the differences.
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thanks HH!!!
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Charlene, what discouraging news. You most likely will not have chemo and radiation at the same time. Probably chemo first (if indicated), then a bit of a rest and onto radiation. You've certainly had an awful year. Is your throat cancer under control? How long will you have to be on a feeding tube? It's good that you are gaining weight. Only you can decide what is the best course of treatment (or non-treatment) for YOU! Whatever you decide to do, never ever look back and question your decision. It will drive you crazy in short order. You will make your decision on the best information available and what feels right. Nothing is easy with cancer as you already know.
HUGS!
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Charlene- Hello. I'm with Molly: You should ask for an Oncotype DX test. My Ki67 was really high, so I started chemo. Then, after 3 sessions, my Oncotest came back a 12 (next to the low category), and I stopped chemo. Grade 3 is sometimes automatic chemo for some countries and docs because Grade 3 means the cancer divides quickly and there is a worry about cancer cells moving to other places. The good news is actually many things: 1) if you need chemo, it's only prevention against recurrence and should not be rhought of as a bad thing if it's getting stray cancer cells in the body, 2) sometimes chemo is not given since recurrence happens in 15 to 30 years and some people will be 100 years old at that time, 3) you are Er+ and Pr+ and that is a good thing because your tumor bed is clean margins and meds can take care of micromets so you might not need chemo, 4) if you do have it, chemo works best on Grade 3, 5) the type of chemo for breast cancer does not really make people sick anymore, especially since you are Her- and won't need need that medicine, 6) breast cancer is no longer a death sentence, 7) you have found this group and we are here to support you. You don't say your age, but your doc with take your age and the fact that you just finished chemo into consideration. The meds are quite good, and she might put you on those. You are so close to your other diagnosis that I'm sure this is just mind boggling, but breathe--- your throat cancer is gone and there are only micromets. You can do this!
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Charlene, sorry that you have to go through this again and now have to wait 2 weeks to get your test results. All the waiting is nerve racking. Hugs!
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So, what is everyone doing this weekend? The weather in Illinois is beautiful right now. I am thinking of going to the mall to get out of the house, but I have to be careful to not overdo it with my shoulder blade strain. I have a check off list and every day I try to get some of it done. It is what keeps me moving forward in a positive way. As you can tell from my profile pic, I am an avid beader. So, some of that beading will definitely happen this weekend.
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Michelle, sounds like a nice weekend you have planned. I'm going to do some ironing. Then spend more time figuring out what to wear tomorrow. My DS and DIL are helping establish a "sprout" church off-shoot and their first "real" service is tomorrow. I'm not much of a church-goer but I'm glad to support their efforts. It is a huge undertaking. It's to be quite cool and windy and services are at an elementary school. Then after that having another "first date" coffee with a gentleman.
Happy Weekend, Friends!
HUGS!
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Peggy, sounds like a good weekend ... Enjoy it!
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Thanks, Judy! I intend to.
HUGS!
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Peggy, you go girl!!!
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Charlene, I am so very sorry about the pathology report. And I completely understand about being told one thing and then they change and say soothing else. Our dx are very similar but this was the first time for me. My Ki-67 was even ambiguous so then I had to wait for the FSH test. Then they ordered the Oncotype, again in the gray area, and finally the Prosigna which determined chemo before rads. The waiting is so hard, and I'm thinking really good thoughts for you. I hope they will give you just a little time to get your weight back up, but know that the medicines they have for nausea of BC chemo is much better. Most of us on the Aug chemo thread have experience very little nausea. We're all sending hugs and good thoughts to you. Dara
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Charlene- so sorry about your news- and that it's your 2nd time! Rant away- we do understand the need to do it- and, it's healthy to get your thoughts and feelings out!! Family and friends want you to be ok and sometimes they just do not know what to say or do. Hugs!
So, I found out about NothingPink.org today. Participated in a ZumbaThon fundraiser for this group at the "Y" today. While I did not need genetic testing- I know many of you have...and, I can only imagine the expense. There are so many women who do not have the means to get the testing. Thought it was well worth sharing with you all in hopes you will share with others as well.
"NothingPink is an organization created to eliminate inherited breast cancer deaths that result from the expense and misinformation surrounding preventative genetic testing. We educate women about genetic testing options and help low and middle-income women pay for testing. We support genetic risk prediction services for all women, regardless of income, race, age or insurance coverage.
60 percent of women with the BRCA1 or BRCA2 gene will be diagnosed with breast cancer in their lifetimes. Early detection is key to survival, and many women with hereditary breast cancer have no symptoms or family history of the disease. Please join me and NothingPink to make sure the wives, mothers, sisters and other women in your families and communities have access to the life-saving genetic testing they need." (taken from the NP website)
Everyone be well, take care and have a wonderful Saturday. Hugs!
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Mary, NothingPink sounds like a wonderful organization, and fills a desperate need for those with no or crummy insurance.
Charlene, I'm surprised your MO is using just ki67 as the deciding factor for chemo vs. no chemo. I remember reading from one of our Ontario BCO sisters that your NHS doesn't automatically pay for OncotypeDX, which is far more reliable (and ultimately much cheaper than a course of chemo). Even though your tumor is grade 3, did they check the mitotic rate, which is the most prognostic of all the factors that make up the Nottingham Score and grade? A mitotic rate of 1 is an indicator of slow growth. You should ask for a full breakdown of all the factors that went into determining grade. You had only 1 positive node, a micromet at that, and your tumor was ER+/PR+/HER2- and under a cm at that. Plenty of grade 3 patients end up with low OncotypeDX scores. With your history and still very delicate condition, chemo would probably do more harm than good until you can regain your strength. They never do chemo and radiation together--too much stress on the body, especially the immune system.
Michelle, my plan for tonight is to get ready for tonight's gala at Navy Pier. Have to put together my outfit and do something with my hair that doesn't require washing it--showering above the neck is still verboten for me, though I am allowed to get shampooed at a salon (as long as my eye is covered and dry) my stylist is off today, and I don't have a salon nearby I can trust not to use the kind of shampoos that would strip the keratin treatment from my hair. So I will have to try dry shampoo and shine spray (eye closed while spraying, of course) and my trusty styling irons. That and a lot of jewelry, a vibrant lipstick and my new woman-of-mystery sunglasses. (Trust me, the sight of my bloodshot eye would suppress the appetites of all the guests who dropped several hundred bucks a plate for the banquet. Sadly, my gel French mani is trashed too, and I can't get to the nail salon in time to fix it even if there were slots available--and I have an appt. for Tues. anyway. Gotta patch it up as best I can with the Sally Hansen stuff). Will Uber it there & back, of course--don't trust myself behind the wheel yet even without alcohol, and my husband intends to drink our money's worth. Tomorrow? Voice lesson and not much else.
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ChiSandy, have a great time at Navy Pier. It must be really beautiful this time of year, as the evenings are getting a little bit cooler. How I loved to ride my bike up and down the shoreline of Lake Michigan. I used to see Oprah out with her trainer at 5am. I really miss the city, but not the smog we used to have in the 80's and 90's. My office was downtown on Adams and at one point, on LaSalle Street. I worked very hard and was treated very well by the firms that I worked with back then. I am sure that you are going to look glam and just leave the sunglasses on during dinner, it is so vogue!
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Hi everyone,
Out enjoying the great weather. Went to Zumba this morning. Then meet my family for lunch to celebrate my niece's birthday. After lunch went to a quilt show. Evidently didn't spend enough money there so had to go to a couple of stores before heading home. Tonight is a quiet evening with feet up reading a good mystery. Tomorrow is church followed by a a quilt guild meeting.
Hope you all are enjoying your weekend!
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Trish, sounds like a perfect day. I'm going to the Spokane Interstate Fair Wednesday and hoping to see quilt displays. I don't quilt so I just admire them. Quilters NEVER have enough fabric
HUGS!
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Its great to see everyone getting out and living their lives. I was going to the mall, before I removed my steri strips because they were coming off. A couple of drops of blood freaked me out. So, I am beading tonight and going to have a nice quiet evening. Also, I started my cycle. grrrrrr
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You know, Michelle, the best thing about menopause is never having to say "I started my cycle" every again. You have my sympathies. Also, don't let a few drops of blood freak you out. It will clot over and heal up just fine. Just take it easy tonight. No heavy lifting.
So, this weekend got off to a rousing start. DH went with me to do a home visit south of the city yesterday--I drop him off at a coffee shop while I do the visit--after which we picked up our youngest. He lives with his host family about 10 miles from where we were, so it was easy to pick him up and take him to lunch. He snarfed down a codfish dinner, plus stewed apples, mashed potatoes, biscuits, and a whole bowl of cole slaw, and was looking for more, LOL. He's 21, so he's probably not quite finished growing, even though he is 6'3". After lunch we took him to get a haircut, then some ice cream, and some walking in the mall. By the time we returned him to his house at 4pm, we were exhausted. And then we had to drive home through Friday Atlanta rush hour traffic--ugh!
Today I was supposed to have two home visits, the first to train some parents who are trying to get their baby back, which has been in foster care for 18 months. The foster mom called me at 7am to tell me the baby was sick and they were on the way to the hospital, thereby cancelling the visit. I set my clock, rolled over, and went back to sleep. The second home visit was scheduled for 1pm, south of the airport, so it's a small hike from my house (about 45min). Doncha know, I drove up to the house, rang the doorbell, and knocked on the door several times--nobody home. So, I drove back home
I was going to take DH out for lunch, but he was still so fatigued from yesterday that I made him a PBJ and put him to bed while I went grocery shopping. He just got up about 20 min ago, at 7:55pm. The funny thing is, he can take a 4-5 hour nap, then turn around and sleep all night. Well, not funny. Sad, really. That just shows the extent of his fatigue. Every little thing wears him out, but especially wrestling with Christian for 4 hours, like we did yesterday. That boy is so sweet, but he's a big guy and just as strong as any other 21yo man. He can pull me right off my feet. But it was so great to just be with him and we hadn't seen him in over a month.
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I had a lumpectomy almost 4 years ago. Results were Stage II, triple positive, grade 3 IDC. Didn't get margins so I had another a month later. Still not all clear, so finally a mastectomy 3 weeks later. I still wish the lumpectomy took care of it. Not at all happy with my reconstruction. But I am living with it just fine four years out. No radiation, "just" AC/TH CHEMO. I was shut off early as the Herceptin was causing heart failure. Did what I had to do, but I trusted my docs. Lumpectomy didn't work for me, but it's a fine option proven to be successful for so many.
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Monstermom- how come you are not on a SERM like tamoxifen? Even with masectomy, many still take a SERM.
Poo - I know Atlanta, a bit. My husband's aunt who is super young, 60, lived in Saint Marlo in Forsythe County. But I have been to some really nice malls, like Lenox Square. I remember visiting several years ago. It was a pain in the butt navigating the interstate during rush hour. Does you son go to a university in Atlanta? My son left on Sept 1, to study in Switzerland. He is 20 and knows it all.
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Monstermum, welcome! It's been a hard road for you. But like Michelle, I'm surprised you're not on Tamoxifen or an AI. Or are you? I'm sorry that your reconstruction isn't good. Can they do anything to correct the problems you see? Thank you for sharing your journey with us.
Poodles, I don't miss having periods either! What an exhausting day you had. I know Christian is a handful but it sounds like it was a good visit with him. Poor DH. It is discouraging that he is suffering so much fatigue. And worrisome, I'm sure. He's a trooper to go with you.
Had a nice evening. The kids dropped in and we had pizza and then DS hooked up my Blu-ray players for me. It's so easy when he does. I'm always baffled. They hadn't been up to visit in awhile and I've done a bit of decorating since they were last here. And they are only 5 minutes away
HUGS!!
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Menopause was a joy for me: no symptoms, and my long years of frequent, copious and painful periods were finally over! No more having to dread periods coinciding with travel, performances, or final exams.
I did my Roy Orbison impression at the hospital gala tonight (Orbison wasn't blind, just had creepy little squinty eyes). Wasn't too hard to see through the sunglasses. Glad I had them, because the blue beams from the video projectors (the ballroom is so big it had two Jumbotrons over the stage) were painfully bright to the naked eye. They looked pretty cool, almost as good as my normal, decently-made-up eyes. I know the hemorrhage will clear up, but I worry if I will be stuck with a permanently droopy eyelid--and that had been the good side of my profile. Looks vs. vision--can't I have both?
As to vaccines, my PCP says to wait a couple more weeks for the flu shot so the immunity doesn't wear off before flu season ends. I need one more Pneumovax booster, now that I'm 65, and that's it. Will get that in Nov. Up to date on Prevnar, shingles, hep A & B, meningitis, and TDaP. Of course, if they come up with a vax for West Nile and/or Zika, sign me up
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