A place to greet and meet newbies to stage III
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Oh, my grade is two, I have an overall score of 7.
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dstar - So sorry about your Mother. you are right, treatment is vastly different now. What happens when you live through it is you get to pick something you really want & say "I earned it, I deserve it, and I'm darn well going to do it". I'm going to Hawaii next April !!!
Your doc will be able to tell you the grade based on your biopsy. Magdalene is right about the chemo group - probably something like Winter 2014 Chemo. I found it most helpful to talk w/women in the middle of the same thing. Also there's a thread like Tips & List for chemo. (sorry I can't go back or I'll lose this post). If you can't find it, let me know & I'll send a link.
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The chemo threads are invaluable while actively receiving treatments. The support of others who are right where you are is immeasurable. Find your starting chemo month...I was December 2013. It is such a relief when you ask a question, nothing was off limits...and you find out you are not alone
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What a great thread. I am just now finding it.I am a stage 3b, ILC with a >8cm mass in my right breast and 9 positive nodes, many of which were matted together. I had a bit of skin involvement and my onc called it "locally advanced ILC". I did 4 TAC before surgery, then had a bilateral mastectomy with the right one being a radical and the left side a simple. My right breast was a mess. Then I did 2 more TAC followed by 30 rads. I took tamoxifen for about ten months until we were sure my chemopause was permanent. Then I switched to Arimidex for a year or so and have now been on Femara for almost eight years.
I passed my ten year mark last month, Nov 5th.
I hated the steroids way more than I hated the chemo. For me, they were wicked.
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Oh, dstar, I'm so sorry about how your mother suffered and that you had to witness that. And to be diagnosed with cancer at the same age that she was when she died must be awfully hard. I think you must get some special award for having to go through your worst nightmare.Turning into a butterfly would be good! My mother-in-law died from breast cancer in the 80s. She also suffered. Things are definitely much better now. There are much better drugs to control side effects of chemo. Sending lots of virtual hugs!
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Hi 2tabbies-I love the photo of your kitty. Thanks for your understanding and kindness. . .you have certainly been on a long journey through cancer-land. I cannot imagine; you are a hero. Did you have genetic testing? Is that why you had a prophylactic mastectomy on your right breast? Can I ask you how large your tumor was? If I am being too nosy, you can tell me to stuff it. I will have genetic testing in Feb.
How are you feeling now? I hope very well! In a strange way, my cancer is letting me heal from some difficult emotions that I shut away because they were too big and hard to handle when I was young. Now, they are in my face but I have more maturity, perspective and grace than I did at 17. Maybe that's the reward, processing old emotions and letting go--carrying a lighter load.
Plus I read you tutorial on teas, that was great. I am drinking a lot of green tea and throwing some fresh ginger root in it. Works on nausea for me. So glad I found these boards, I cannot say. I will stay in touch.
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Minus Two and Robin LK--Hey ladies, thanks for your good advice! I am now in a January 2015 chemo thread. Found someone with the same chemo protocols as me, starting 1 day ahead of me. Good to have a chemo buddy. Hawaii sounds great, by the way!
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Minustwo, I am planning a trip to hawaii too! if i can pull it off, it would be nice to overlap a day with you! My man doesnt know i am planning this trip yet, its a suprise. I have lots of research to do, which island, what i would like to see, etc. maybe see you there!
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Tomboy - we're going to be taking the NCL 7 days cruise out of Honolulu that covers 4 pr 5 islands. I've spent some time in Hawaii and my favorite island is Kauai. For diversity, check the Big Island (Hawaii). You can go from mangos at sea level to apples & snow in the mountains. Yes, let's check dates later.
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Jillian, thanks for sharing ur story!!
Dstar, the threads r do informative...learned here more than anywhere else.
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dstar, I don't mind the questions at all. That's what the forum is for. I did have genetic testing a number of years ago. My doctor thought it was a good idea because I'd had ovarian cancer and lymphoma and had an aunt who had probably had ovarian cancer. We aren't positive, because that was back in the 50s, and people didn't talk openly about cancer. As it turned out, I don't have the BRCA genes. I wish had tested positive for them. I would have had a prophylactic mastectomy and avoided the entire breast cancer trip. The reason I had the prophylactic mastectomy on my right breast was that the MRI found some suspicious areas that needed to be watched in that breast. After years of mammograms that couldn't see through my dense tissue, ultrasounds, MRIs, and biopsies, I'd had enough. I'd also been told ILC was more likely to recur in the opposite breast than other breast cancers. I just wanted to be done with it. Given my history, the hospital tumor board felt that was a reasonable course of action. As it turned out, there was no cancer in that breast, but who knows if it might have shown up later.
My tumor was 5 x 8 cm. I couldn't believe it when they told me that. How could it have been that big and not have felt like anything except the dense, thick tissue I'd always had? But there it was. I'm feeling ok, physically. I'm still feeling kind of tired and beat up emotionally and mentally. Some of that is mood swings that are a side effect of the Tamoxifen I'm taking. I'm also in the middle of reconstruction now which of course has been physically tiring. It's been a bit of a psychological boost though. After I had the first fill of my tissue expanders and looked relatively normal in a shirt for the first time in 16 months, I was practically giddy. I admire the women who can embrace being flat, but it just isn't me. That was kind of a surprise to me. This whole adventure has been full of surprises. Mostly bad, but I did get curly hair after it grew back. When people ask me if I've had a perm, I say yeah, at Salon Chemo. ;-)
Good luck with your chemo. I think what you're having a pretty common protocol. It's nice that you found someone else having it at the same time so you can cheer each other on. I had cytoxan and taxotere, but not adriamycin. I'm not sure why. I think because my oncotype was just barely high enough to make chemo worthwhile so my MO said he was giving me "chemo lite." I guess the benefits of the extra drug in my case weren't worth the side effects in his view. In a way I wish I'd had it. I wanted to go at this thing with all guns blazing.
I'm glad this experience has helped you heal from an earlier trauma. That's a bright spot. I'm glad you found my tea tutorial useful too! I'll raise my morning cuppa to you!
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2Tabbies: Have you ever asked your onc how long they think your tumor was there? That's always been a puzzle to me because my onc and others too say the same thing to their patients, which we know, cannot possibly be true. I also had dense tissue which hid the large tumor I had on the right side. I opted for the bilateral mastectomy and never regretted it. Did you get an onco score?
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shelly, my MO said the tumor was probably there for 5-7 years. Amazing, eh? I did get an onco score. I can't remember the exact number and am too lazy to look it up. I think it was 24 which my onc said was a good score as far as meaning a relatively low chance of recurrence. However, the chance was just high enough that he thought I'd benefit from chemo. So as I said above, he gave me what he called "chemo lite." Only 4 treatments of taxotere and cytoxan.
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Hi 2tabbbies,
Thanks for all the info! Going in today to get my port, yikes! Got my teeth cleaned yesterday. Will be going in every three months while I have chemo. My dentist was great. She said they want to watch for bone loss during the process and for gum health.
I REALLY liked what you said about going at this thing with all guns blazing! Those are words to live by from now on, that is my mantra when I am scared and things are hard, a way of reaffirming my commitment to survive the storm that is cancer.
Have a wonderful Christmas to all who celebrate!
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dstar, I hope the port placement went smoothly. You'll be glad you have it. It makes chemo so much easier. It makes blood draws a piece of cake for that matter too. I hope you were able to enjoy Christmas without being too stressed. Keep us up to date on how you're doing!
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I'll say again - I LOVE my port. It makes everything so easy. I don't want to have it removed. What will I do for blood draws if it's gone since I already have truncal LE? And very few techs have a clue how to draw blood from an ankle!! Oh well, something to decide in the new year.
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MinusTwo, I don't have any "good" arms for blood draws either since I had nodes removed on both sides. I've had one flare up of LE in my right arm. Since my port was removed, I just cross my fingers, let them take blood out of an arm, and hope for the best. Apparently, there really isn't any good evidence that routine blood draws actually cause LE according the latest pamphlet on the subject from my hospital. Yes, they've been telling women that blood draws, blood pressure measurement, etc. cause LE for years. But when they looked at the data, they found nothing to say that's true. Do I still worry about it a bit? Yup.
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When i finished chemo, MO asked if I wanted the port out, I said Heck No! So I just have to go in every couple of months to have it flushed.
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magdalene, I thought about keeping mine, but it was in a spot that was annoying - right under my bra strap. I imagine the surgeon did that on purpose so the strap would hide the scar, but it rubbed on the port. There's also a risk of infection if it's ever contaminated while it's being accessed. It's probably rare, but if you do get bacteria in the port, it's hidden from your immune system, so you can get a very dangerous infection in a dangerous place - near your heart. My MO advised me to have it removed, so I did. I do miss it when I need a blood draw though.
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Magdalene - I'm leaning more towards your response. Before my port was 'installed', I drew lines on my chest w/magic marker where the bra straps lay so she could avoid those spots so it's very comfortable.
As for my MO - he isn't a big fan of artificial "things" in the body, but said I could make my own decision. One comment he made that I found interesting is that some women are better able to put the entire cancer experience behind them and move on more easily when the port was out. Well, I did that the first time & had 2 years before recurrence. Now I tend to be more pragmatic about keeping the port. Not depressed or anxious or worried about "when" it will come back, but realistic that maybe the port is a valuable tool for me. My son's comment was that I might worry less over-all with the port instead of constant fear of aggravating the LE - which is unfortunately already a continual painful condition.
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Minus, the big reason I opted to keep mine is that my veins are so bad. So many years of donating blood has left my inner elbows scarred, and the veins roll. I've had several blown out this year, so I'm definitely keeping the port.
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Hello everyone. I have been reading the boards here for about 2 months and have finally decided to post. I was 43 at my Dx and turned 44 the day before my first chemo. My second chemo is next week. I have a beautiful 6 yr old son and a wonderful supportive husband. We were married a year and half and then cancer. Regular mammos showed nothing. I obsess over my unknown future. I cry usually daily. I know I will do all the treatment the docs say but it sucks that after walking through hell there's no guarantees.
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Hi justkeepswimming44, I am sorry you have to go through this. Our diagnoses are similar and the treatments are too, so if you have any specific questions just PM me any time. I will be happy to help while it is still fresh in my mind (completed chemo a year ago.)0 -
Hi justkeepswimming, ditto what muska said...my DX is below...this will get better, I promise. No denying it sucks, but don't think too far ahead, one day, one treatment, one appointment at a time. And remember to breathe
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Thank you for replying muska and Jenwith4kids. It helps to connect with ladies who have been there.
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JustKeepSwimming, all I can say is that I agree that it sucks. I'm still pissed that I've led a very healthy lifestyle and still got cancer, and that it didn't show up on all those damn mammograms that I had. I love your username, and that says it all - just keep swimming. That's all we can do. Good luck with your chemo. May the side effects be few. I had a slightly different chemo regimen than you since I have ILC rather than IDC, but otherwise our treatments are the same. Hang in there!
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JustKeepSwimming-
We want to welcome you to our community here at BCO. We're sorry for what brings you here, but we're so glad you decided to join us and share your story. We hope you find this to be a place of support and encouragement when you need it most.
Please don't hesitate to reach out if there's anything you need. We're thinking of you!
The Mods
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Hi 2tabbies,
Port placement went OK, pretty painful after the local wore off, had to take oxy again for three days. But I still enjoyed Christmas and family being together. Very nice. But now it is healing and is still kind of uncomfortable but it is so much better. And it has been accessed for my scans, so much better than my arm, so totally worth it! Had a little scare that I had mets to a rib, but my onco has decided to move forward with chemo and said the area is probably not cancer but an old injury but it will need to be watched. Maybe a blast with rads when done with chemo. Had a filling replaced with a crown so new chemo start date is 1/22. Whew.
Hey, JustKeepSwimming, Please join the Jan. 2015 Chemo thread if you want to. Everyone is going through exactly what you are. For me, it really helps maintain a positive perspective. Lots of great women there to keep you strong. I understand the fear and the sorrow, and you have a child so it is really scary. I was misdiagnosed as well, so my cancer grew. I cannot change that so am moving forward. Try to take it slowly, as others suggest and breathe, this is a process. You will get through it. All any of us really have is the present moment. I try to focus on things that make me happy everyday or something I am grateful for like each friend and family member who loves me or my little terrier who makes sure I get two long walks everyday. A great cup of coffee. The birds at the feeder. A big blue sky. Some days I get overwhelmed and cry when I wash the dishes, treatment can be punishing and full of loss. But those days are fewer and farther apart as time goes on. Stay in touch, don't give up, it will get better for you.
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dstar, good to hear from you. I agree that the port is totally worth it. I hope that thing on your rib is an old injury. These scares get tiresome, don't they.
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Hello: I don't log on too much but I just want you to know that January 11th was my 4 year anniv from DX. Our DX is very similiar and I had 15 pos nodes. I'm doing just fine. There were a few bumps in the road but everything always checked out, thank God. I have just been promoted to seeing the Oncologist every 6 months. You will get through this and you will move on too. If you ever have any questions, feel free to contact me.
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