2010 Sisters
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Just doing some reading and decided to speak up in this group since I'm a 2010 Sister. I had BMX 6/28 with TE, sidetracked by skin necrosis which is still healing almost 10 weeks later. I've learned a lot of patience...
My oncologist has been terrible. I am working today on setting up a second opinion ASAP. I was not aware of the time frame from surgery to chemo so I am going to be way past 12 weeks if I decide to move forward. IN THE PINK- my OncotypeDX sat on my oncologists desk over 3 weeks, they never called me - I called them to set up appt. to discuss. Bottom line, I had two small tumors (under 1cm) of IDC, w/DCIS, grade 1, no nodes, er+pr+, her-. My oncologist said definitely no chemo based on this. He overlooked the fact that I had DCIS 9 years ago, tx with lump/rads. Now my oncotype dx came back 24 - middle of the intermediate range. I really don't know what to do. Oncologist says no chemo still, partly because of the wound on my breast which he says would be "a disaster" with chemo. That was reassuring! My gut is telling me get the skin & TE's removed & skin healed, and get on with the chemo. Someone here mentioned the DX report page 2 giving statistic on 10 year recurrence w/chemo but I can't find the exact number - just a graph that is hard to read precisely. I should have asked more questions yesterday when I met with the onco but I was so surprised at the result that I was sort of dumbfounded. Also, I already had decided I was going to pursue a second opinion. This doctor is recommending hormone therapy (femara) for 5 years. Thanks for listening! I'm going to go back and read this thread from the beginning, just found it when doing a search on oncotype dx..
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Meltdowns are good. Altho it seems I only do them HERE! LOL! Y'all are gonna think I'm a big baby! Only my husband has seen me cry 3 times thru-out this. I have been strong, and seems like I spend a lot of time comforting OTHERS! How does that happen?
I had a meltdown this morning after everyone left the house... just cried. I already lost my breasts, is it REALLY necessary to have to be bald too? And nauseaus and fatigued and hurting bones? REALLY NECESSARY??? SAYS WHO? I demand they re-evaluate the necessary of inflicting more pain and humiliation! <---- It was one of THOSE rants and screaming fits I was yelling at my poor dog!
And now I feel better! I just needed to get that out! And I think everyone does it, and it's OKAY! We are entitled to our rants and meltdowns. Then we can go back to looking at the big picture, and the big prize down the road. We will be ALIVE to ENJOY life. And spend time with our loved ones. THAT is why we are doing what we are doing. And in the big scheme of things, whats a couple years of hell on earth, to enjoy the rest of our lives with those we love?
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- Jane, A friend of mine used Dr. Luis Chu of FL Cancer Speiclaists in Sarasota. Loved him.
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jblcsw10 - did the same cancer come back or is it new cancer? That makes a difference. I'm sorry to hear your Onc is such a shit. I fired my 1st one and the Onco test only sat on her desk for a week and instead of apologize or even acknowledge me, she made lame excuses. I found out because I called the Oncotype folks to find out the status. I have a wonderful Chemo Onc now, what is with these folks? Isn't there something in the Hippocratic Oath about, "first, do no harm"? Anne068 - it ain't right and it ain't fair. I'm sending you both and all the BC Sisters extra love and hugs today( because I got an extra day off of rads today). I am beginning to see the light at the end of the tunnel and wondering if I can get hypnotized or something to make me quit thinking about stupid cancer everyday. It's taken enough of my precious time already.0
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another shitty day in cancer city.it looks like a rant and rave thread today.SOOO lets just let it all out. ill say it again I WISH CANCER WOULD GET CANCER AND STOP ALL THE GOOD PEOPLE FROM SUFFERING.
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You tell em grannydukes!
No news today of course. That would be too easy. And who ever expected cancer to be easy? LOL. I just may have a lil rant with the rest of my sisters! This Cancer stuff needs to take a hike and let go. It does have a hold on us, our lives and our loved ones. Can ya hear me rant? It is so good to know I'm not alone with this. CherlyIQ thank you, I didn't have to have drains after my SNB - only 5 nodes removed (1 positive) and no problem with drainage thank goodness. Hope your other one is out soon. Feel free to rant with me
. Cathy
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jblcsw10- Hi Jane. I'm so sorry you got a lousy Onc. It is SO important to trust your Onc and know they are responsive and available. I would definitely get a second opinion and switch. As your Onc didn't explain the Oncotype DX score well enough, I would recommend calling the Oncotype people directly (their phone is on your report). They are SO nice and SO thoroughly informative. They actually explained it better than my BS (who I adore). Keep in mind that the projected statistics are if you take Tamoxifen for 5 years. I hope you find a fabulous new Onc!
Anne- Nothing like a good rant to clear the soul. You made me remember ranting at my own dog when I was home alone and in terrrible pain from a kidney stone. Poor little thing, she was so upset, I could tell she wanted to do something to help, but what could she do with this moaning, insane, miserable woman? Nothing like doggies!
I just returned from chemo #5 which they almost didn't give me because my white count is low. She said we could postpone for a week, but they are all booked up because Labor Day (no room at the Chemo Inn!) She said the only way to get me the chemo next week would be to admit me. He#*& NO! As she left it up to me, I looked at DH and asked what I should do. As always, he smiled and said "take a chance, roll the dice". It is wonderful having someone brave to cheer me on when I am scared. My Onc gave me antibiotics to start next week in the hopes of preventing some as yet unknown infection. I hate antibiotics, but I'm sure my WBCs have never been below 1,000 before so I guess I'd better take them. I'll probably get a yeast infection. If it isn't one thing it's another. Just like Roseannadana says!
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DesignerMom: You probably don't want another pill to take, but I complained to my doc that I get yeast infections with antibiotics and he told me to take lacto-bacillus while I was on them; it replenishes the stuff the antibiotics eat up. Worked for me, no yeast infection.0
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Amyjo I pray your surgery went like mine. I came home yesterday (BMX with TE finished around 9:30pm Tuesday). I have not taken any pain meds not even the morphine pump. Other than some initial nausea I've been good… but I really shouldn't be online. I'm just bored and not all that tired.
BTW I meet with the oncologist in 1.5 weeks. Chemo isn't optional for HER2+ at stage II or III IMO.
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Ladyin Bama- I'm a big acidophillus fan. I will definitley boost what I normally take. Thanks for the reminder.
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While on antibiotics recently I found Kefir at Traders Joes and it appears to be full of all different kinds of micro-organisms. Tastes ok too. Anybody else drink kefir? Is it helpful?
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lago, glad your surgery went well. Nice rant Anne, I second every word and a few more. Have a great weekend everyone.
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Happy Friday Sisters!
Day 3 - slept really well last night, but felt a bit zonked even after 10 hours or so. Got some toast, water, and the last of the Rx anti-nausea meds in, and then a little breakfast and am now starting to feel a little more alert. Big event of the day will be a shower!
Barbara - your new avatar pic looks great! Have you been out partying??!
Designermom - also if the acidopholus boost doesn't work, you can request a Rx of Diflucan - it's a one-pill dose of antifungal to prevent yeast infections. I've used it before and it works great - a LOT better than the suppositories of yesteryear!
All of us are entitled to rant and rave and bitch and moan . . . we need to express it and then search for some bliss and peace through something pleasant.
Sending prayers and hugs to all my sisters!
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I was diagnosed with DCIS on May 18th. Funny how we can remember these dates, isn't it? On July 8th I had a uni mx during which they found a small area of invasion. So I jumped from stage 0 to stage 1. Lymph nodes and hormone receptors were neg. I had a port put in on Monday and that surgery went very well. I had no pain or discomfort. I was al ready to start wearing my fake boob and now the port is probably going to interfer with my bra straps. Fortunately,I'm kind of small and if I wear print shirts you can't tell I'm lopsided unless you stare.
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I hear ya Scrabblelady. My diagnosis came on my 20th wedding anniversary - no way I'll ever forget that! Definitely NOT the type of celebration I was hoping for!
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lago - Very glad to hear your doing so well... wtg gal!. Welcome scrabblelady. I will be joining you at the Sept. chemo club. And Mrs. Nice - glad your doing better. Have a nice long w/e ladies!
Cathy
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Glad everyone is good for the time being. The new avatar pic is not new. It is actually from my wedding (did it in our backyard on the intracoastal). That was three years ago. Wait til I finally let someone take the 'new me' pic. ?? Not so hot but working on it. Hope all the sistas have a great holiday weekend.
I made DH help me put together teak patio furniture today. (FUN!!) He was a prince. Now, this is the man who, when I met him had not one screwdriver in his house, nor a hammer. In fact, he had ordered a TV stand and when it came, he looked at me and pointed to the box. I said, "Good grief! Where is your tool box?" Sheepish look.
Fast forward 13 years and he actually can use tools (only at my urging and assistance).
Love, ain't it grand?
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I am home now and really sore, Ny daughters have gone to the phamacy to get my antibotic and another sports bra for tomorrow. I am running a little fever but hopefully it will come down after I take the antibiotic they have gone to get. I can hardly get any thing right tonight. I will post some more tomorrow.
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I actually don't remember the exact date of my diagnosis. From the moment I did the mammogram, the radiologist and everyone else stamped it "malignant". I got all the sad looks from the people in the hospital, but I kept thinking, "couldn't it be where I banged my boob into the door frame or something?". So it's really not a pivotal date; when the BS came in after the biopsy and said, "okay, well it's not so bad" it was just a matter-of-fact discussion after that.
I always thought men and tools were glued at the hip! But, I'm the one that has to fix things around here and the only reason I know how is because my Daddy taught me. My exDH (ha) didn't know a thing - I think he was just lazy - and now my son has to learn from me, of all things. I just know barely enough to get by until I call the pros.
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Hope everyone is having a good night. I haven't been on in a little while. Had meltdown, thought about not doing chemo and didn't want to go in today to meet new onc and team in hometown. (I was traveling to Boston until today for all my procedures and surgeries)
Love my new onc. We settled on a port - scares me to death! A foreign object implanted in me. Also, I don't want yet another scar! I feel like Frankenstein - a big science experiment.
Port goes in next week - any suggestions from those who have one? Is it painful, noticeable, etc.?
Chemo the following week - I will be joining the Sept Chemo Club. My cocktail is TCH. 6 treatments once every 3 weeks. I will also be going in weekly for the first 18 weeks for Herceptin.
I will try to enjoy the next few days....I feel like a storm is looming.
Night ladies, thank you for giving me a place to go. I really don't have a good support team, so you are my saviors.
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not liking what im reading tonite...meltdown,antibiotics.the only thing positive is that barbara changed her pic and she look soooooooooooo good.
jag.we are always here for you even on the weekends.on call 24/7 not like the drs.lol.
its hot as hell tonight.AC is pumping real hard.
cannot wait for the fall
enjoy the holiday weekend.stay safe my sistas.God bless
K
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Jag: I love my port. So much better than needle sticks every week, possibly several needle sticks depending on if you have good veins. Yes, I have a scar, but not very many people will be looking at my body in the place where the scar is! The surgery was short, sweet and no pain (outpatient).0
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HI Jag!
I have had my port for over a year, and am so glad I have it. It didn't hurt getting it put in--I wasn't all the way out, but they gave me light sedation (happy drugs). You will be sore for a few days though, but I didn't find it too bad, I think I had pain pills to help.
Its a little noticeable, and you'll end up with 2 new small scars. I used to be self-conscious about it, but now I forget its even there.
Ask for a scrip for "emla" cream. Its a type of lidocaine that you put on your port about an hour before you get chemo and it numbs it. I need to put on a big glob at least an hour before, or I can still feel the needle. Some people get used to having it accessed, and don't feel much, but it still bothers me.
Ask for a power port, or smart port, and then it can be used for ct scans and such. Really saves the veins!
Hope all goes well!
Tina
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Hello again ladies.....been gone for awhile. This week has not gone exactly as it was planned.
I did see the BS on Monday, but found out I did not get into the medication Trial. It seems I've been downgraded from Stage II to Stage III and they "re-measured" my tumor. It's 5 cm x 3.5 cm.
I had my first Chemo with Abraxane on Wednesday. I'll have a weekly treatment for 3 months, then a treatment once every 3 weeks with a combination of Fluorouracil (5FU) and Doxoruvicin and Cyclophosphanude (FAC).
Then the BMX followed by 5-6 weeks of Radiation with Reconstruction after healing.
My question is......my medical team has know for at least 2 weeks that they were not going to let me into the Drug Trial. They didn't need input from me for anything, but they kept me sitting in a hotel room for 2 days waiting for them to schedule me into a Treatment Room for my first Chemo Treatment. WTH????
After leaving Voice Mail messages on phones for everybody and their sister, I finally talked to the Patient Advocate in the Medical Team. I think I got her attention and I expect at least an apology from my Onc by Tues. She is only in the office on Tues and Thurs and teaches on Monday and Wednesday.
But it's like I told the Patient Advocate, after the second day in the hotel, I was feeling like the can kicked to the curb. I felt like I was being told that I existed for the convenience of MDAnderson and not the other way around, and I didn't need the added stress. I had already waited 4 weeks for the appointment with the BCS, and I felt they could have got their ducks in a row a whole lot better!
There is too much about having Cancer that you can't control anyway, why give us any more stress than we have to live with any way?
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Hi Ladies - jag- I don't have a port but I'm told they are not too bad to put in nor is a picc line which I'll be having put in next week as I'll be starting my chemo mid Sept. Waiting for a call for the exact date. I've also joined the Sept. chemo club. You need NOT TO GO THIS ALONE. Join hands and we'll walk this journey together (alone with many other sisters). If anytime there is anything I can do please don't hesitate to PM me and just ask. I know the feeling for a storm looming- fear of the unknown. Many sisters tell me its doable and we will make it too. Hope your feeling better after your meltdown. Sometime we need them just to let it out. I had one last week. Hope everyone is doing well.
Cathy
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mac5 - Sounds like they forget they are dealing with real live humans with cancer not samples of tissue they are dealing with. I think they must get so involved with their trial studies they forget to treat you with dignity and kindness. That is sad and I'm sorry you had to go through more stress. Yes we all know there certainly is enough stress with cancer without adding more. Hope your doing better now.
Cathy
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Amyjo, just take it easy and take the pain pills/antibiotics as directed. Soft (((HUGS)))) for you. Jag- meltdowns are fine. In fact, I had one yesterday at the gastro doc. Felt GREAT afterward. Mind you this is the doc who called in an RX for a drug I am allergic to. Nice, right? So I went off on him , using word like 'you're lucky I am not suing you!' That got his attention and he knows I would win and that he is lucky I am not suing him. He was VERY nice to me.
Mac - that's exactly what I'm talking about. I chose to go to my local hospital's cancer center rather than a regional cancer center about 25 miles away. I chose that specifically because I knew I would get personalized care and would get to know my team and they would know me as me and not a number. Glad I made that choice.
GD - That is a very OLD picture. Afraid to have a new one taken.
TryN - you are so brave. I am so lucky I didn't have to do chemo. I would have fallen apart. Then, of course, you sistas would have dragged me back togther and kicked my butt back in line and made me get on with it.
Thanks sistas!
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BarbaraA- LOL- I'm not brave at all. I just have to do this.. we weren't given the option or we would have said I'll pass. And YES my dear sista we woulda kicked your butt and dragged you there and given you the support that you give us.
Cathy
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Morning. I am doing better, this 2nd chemo treament was a rough one on me. I also must have a little cold or something as I keep pitching a fever and getting the chills and shakes. Tylenol Extra Strength manages this and I have been in touch with the Onco Nurse and she says I am fine, to lay low and drink lots, so that is what I will do!
I think the healthiest and best thing we can all do is to let go of those emotions when we feel them. If not, if we try to be strong or not allow our anger, frustration, fear out we will eventually be in a state that will really do us in.
I have had a few good meltdowns and do not apologize for them or hide them. This whole thing SUCKS. Cancer is an invader and takes what it can, parts of our bodies, our emotions, frightens our familes and friends, robs us of our dignity, our health, our work (perhaps for a time) our sense of "normal". We never ask for this and yet, we are in Cancer Land.
And if I hear one more person tell me to be positive, I will have to hurt them! Like getting up everyday and facing whatever that days brings is not positive enough? Hell some days don't we all wish we could just lie somewhere (without any pain) in a fetal position and be left alone??
That is my rant. I bid all of you an amazing and pain free, long holiday (Labor Day) weekend
sending you all the gentlest of hugs
take good care and just breathe. . .
Teklya
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Mac5: What a rotten experience. I am also a patient at MDAnderson. In July I had my surgery done by a wonderful doctor. I just had my port put in on Monday with no issues. I will be getting my chemo at home since it's a good 4 hr drive to MDA. I did find that certain people there do not check there voiemail and/or email as often as I was told. And then others would respond within hours. I hope all goes smoothly for you from now on .
jag: I had a power port placed on Monday under general anesthesia. I was a tiny bit sore, but n pain. The most discomfort was from my neck incision. My neck felt too tight to turn in one direction. But after day 4 it feels fine, now. My port does not protrude very much. But I fear that it will interfer with my bra straps. Bring a small pillow for the ride home. My port's on the right and the passenger seat belt went right over it. Nw that I think about it, I sat in the back seat so I could use the left seatbelt.
Scrabblelady
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