What I Wish I Knew At the Beginning of Treatment!
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Hi all,
Thanks for this thread. I too had a resident "practice" on me for my biopsy. I had never felt that kind of pain. I still hurt today and it was on 1/16.
I'm allergic to codeine and derivatives so getting pain medicine w/o narcotics is very challenging. I can take Tramadol w/Benadryl but it doesn't work that great after a procedure.
I'm going to push for Morphine for after my lumpectomy like I did for my DaVinci hysterectomy. That recovery was so fast and pain free.
I'm also going to make sure an actual surgeon is doing the surgery. My breast is just too sensitive.0 -
Shady,
That is a great point. When I had my Ooph, there was a resident assisting. At first the resident told me she was the primary. I politely declined, advocated for my OB to be the primary, and then had them put it in writing. lol
For some reason, (another lesson I've learned the hard way), when things are "in writing" hospital staff seem to take it much more seriously.
When I refused axilla dissection, THEY put it in writing and had ME sign it...lol.
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They called today to make sure I'm all set for tomorrow so I asked if Dr Fine is performing the surgery. I told them I did not want a resident. They said that he is doing it and there won't be a resident in this surgery. Maybe he doesn't have one right now.
I'll reiterate this to them tomorrow am. 14 hours to go. I hate waiting.0 -
Great Shady! Good luck!
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Bump for a friend
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I started treatment for bc on Jan 19th 2013; was diagnosed on Dec 24th, 2012. Every 3 weeks I receive TCH and then every Monday I receive just the Herceptin. Apparently my oncologist says 4 months for chemo or 6 cycles as she called it. Does anyone know if the cycles get worse at time goes on. Does the chemo build up in your system? After 4 months of chemo I'm suppose to get surgery to remove the hopefully smaller tumor and lympth nodes too I believe. As you can tell I don't know much about this whole cancer thing. No one in my family ever had it; so I am at a complete loss and terrified.
With a total of 5 yrs treatment chemo/surgery/chemo/radiation then herceptin every 21 days for 1 year and some type of pill for 5 yrs after that is what I was told. Sop I'm approaching cycle 4. The bone pain in pretty bad after I get the Neulesta shot; does anyone know to take to make it a little more comfortable? Thanks all...wish we were meeting under different circumstances though of course. Thanks for listlening
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Welcome to the forums ((Kamalot)))...we know how you feel, you've just been blindsided by this diagnosis, there are so many questions and so few answers right now - I know it's hard to believe but it will get better. We know the fear you are feeling...yes, it is so overwhelming but we're here for you...You will find the answers to many of your questions in the posts on the "newly diagnosed" boards so I am putting that link in this message, check it out and post your own questions there as well and you will find lots of caring and supportive responses.
http://community.breastcancer.org/forum/5
There are also boards with great advice for those of us going thru chemo. I just finished chemo on Dec. 26th of 2012. I found so much wisdom and good information from the long term survivors who had gone thru it before me. I had every 2 week cycles - it was called "dose dense" chemotherapy so it built up between cycles. At the end of chemo the side effects gradually fade, they don't go away quickly but they steadily decrease so I have a few things that I am still dealing with but it's not bad at all. Hang in there...(((Hugs))) Maureen
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Kamalot, are you triple positive (ER+, PR+, HER2+)? If so, you might want to check out this thread:
Triple Positive Group:
http://community.breastcancer.org/forum/80/topic/764183?page=541#idx_16229
Since you started chemotherapy in January you might also want to check out this thread (the January 2013 chemotherapy thread). Additionally (and in case you're interested) there's a Facebook group associated with the January chemo thread linked below:
http://community.breastcancer.org/forum/69/topic/797712?page=93#idx_2783
I started TCH (Taxotere, Carboplatin and Herceptin) on January 2, 2013. I had the first dose of Herceptin as a stand-alone dose on December 12, 2012 because my chemotherapy treatment was slightly delayed due to an infection in the tissue-expander in my non-cancer breast.
Regarding bone pain following Neulasta: have you tried taking Claritin prior to and after the shot? Many find success with this protocol. I have been following it and have been fortunate not to experience the long bone pain that some have described having post-Neulasta.
As far as being terrified goes - yes, I agree completely - it is very scary but I have found that interacting with others who have either gone through it before or who are currenty going through it makes it a lot less frightening. The two threads I posted links to above are very active and you will find all kinds of support, advice and camaraderie.
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Hi ladies! I'm from March 2013 Chemo group...I'm 27 yrs old and was diagnosed on Jan 23rd with IDC grade 3, stage 2, triple negative . I underwent a bilateral mastectomy on March 1st...I go in on the 22nd to have my port placed, and my chemo treatments start on the 25th. Oncologist ordered 4 rounds is AC followed by 4 rounds of Taxol...I am so nervous to start this chemo and would love if you ladies could give me detailed realistic information on how it affected each of you...and also information on the port placement. I have this obsession with knowing everything possible whether its good or bad...knowing what to expect has helped me so much! I read the good, bad, and ugly about my surgery before having it, and I'm thankful I did because this whole process ended up being a lot easier that I expected...I'm healing well, and doing a lot more than I thought I'd be able to...but please , as much info, good or bad, I'd love to hear all your stories!! Thank you!!!!
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Keke, I just replied to you on the January chemo thread. Re: port placement - mine was relatively easy. It did require general anesthesia but it didn't take very long and it has been very easy to access for treatments/blood tests. I wish it didn't stick out as much as it does but it is what it is and it's a lot easier than having IVs set all the time.
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Thanks..I think I'm doing a lot of freking asking myself out..it's jut so hard BC once I come to terms with one thing, the drs throw something else at me...is never ending! And since you've lost your hair, what is it like going out in public, I'm sure you get stares..but do you get people asking you questions? See I think of so many questions in the matter of minutes! Lol
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Keke, yes, at the beginning it feels like there's a cascade of news - and not much of it all that good.
Re: hair - I have two wigs (one long/one shorter), a halo wig (to wear beneath hats), several Buffs (Link: http://www.buffusa.com/sports/) and a stack of beanies/ski type caps and a few hats. I never go out without something covering my head.
I am not completely bald but about 99% bald and it's not a good look.
Re: questions - ask away - it's the only way to start feeling on top of the situation.
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Loretta,
I'm fairly new to this, just getting primary diagnosis in January myself, but even with 2 different types of bc (triple neg. IDC grade 3 in rt. w/1 lymph node involved, triple pos. grade3 IDC in left, no lymph inv.), my surgical onc. told me the best studies showed no dif. in success rate for modern treatment btwn. lumpectomy w/ rads & mastectomy...She could not recommended one over the other, I would have to decide what I'd feel most comfortable with. What a choice! But I do have confidence in her. Obviously I don't know all the specifics of your diagnosis, but I would definitely get other opinions! I have been amazed at the differences in people's treatment plans I read these posts! I am going to a renowned university cancer center and have been very impressed with the thoroughness, honesty, and methodical approach to my treatment. Every practitioner has given me as much time and attention as I've needed, and the presence of residents and interns and their roles has always been announced ahead of time, and the repetition when residents and attendings came in seperately was actually clarifying & helpful. Most of the time I have questioned (which I just do naturally bc I want to understand EVERYTHING), it has actually only resulted in a change or correction with nurses(: I have always had DH with me, & sometimes mom as well. But I will def.keep all this great advice in mind!0 -
LisaBug, I too have been keeping everything from my family. I even managed to have 2 biopsies performed without my kids suspecting a thing. It was incredibly hard because the numbing medication didn't work. I am now over a week out from the biopsies & still have major pain & am running a fever. When I received the results and met with my oncologist, I decideded it was time to tell my family. It was awful, but they needed to know.
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Loretta,
A very recent study found that in some women (see article at link), lumpectomy plus radiation had better survival than mastectomy alone. I've seen oncologists quoted saying that it is worth further review, but it has not changed the standard of care since it is just one study. For years doctors have believed the two have equal survival.
I did a bilateral mastectomy plus radiation, but I had a different case from you.
http://www.cbsnews.com/8301-18563_162-57566311/mastectomy-or-lumpectomy-new-study-could-help-women-decide/0 -
Hello Ladies! New here and to breast cancer, posted as much as I know for now regarding my diagnosis and treatment plan. Just start AC chemo 3 weeks ago and started losing hair earlier this week. I have a long road ahead and hope to arm myself with as much information and support as I can get.
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Welcome Shawn
I see you are triple positive. Please join the triple positive thread for great info!
http://community.breastcancer.org/forum/80/topic/764183?page=561#idx_16815
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Thanks for this!! I'm a softie and you gave me some tools to work with to get what I need and want when I start my treatment.
Thanks
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irishdancing - what further treatment do you require? Your signature line shows DCIS and lumpectomy, is radiation the only additional treat
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Thank you for this statement. I just recently was diagnosed and was referred to an oncologist, but the staff are absolutely unbearable to deal with. Each has an agenda from beyond the walls of the medical facility. After days of calling, asking questions and receiving nothing but rudeness (one returned phone call the nurse called me but when I answered she did not hear me say hello, she sighed heavily and uttered thru her teeth the word stupid) I decided it was time to fire that group and move on! You have confirmed what I kept asking myself "who is the star of this rodeo?!?!" ME --- I just didn't understand the behaviors. Shouldn't they just know to be nice? No one is asking them to cry, worry or care - just don't be mean.
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Next40, you ARE the star of this video, and believe me, they are making big money from you. You have every right to change to a group who will treat you with compassion and respect. Good luck to you, and welcome to the boards.
JoAnn
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Sorry, meant "rodeo" not "video". Darn auto-correct! Lol
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BUMP for all the newly diagnosed.
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This is great information. My husband has been a great advocate for me. When the nurse practitioner told me I wouldn't be getting any local anesthetic and on the same day I had a bad breast MRI experience, totally the techs fault because to begin with she claimed there wasn't a mirrored headrest, among other things she did, my husband called them to complain and said, "If you don't give her drugs, this surgery isn't happening." Bless his heart. He did that because when I got home I was crying and had cried all the way home, I guess I'd had all I could take. He was with me but had to leave to pick up our daughter at school.I am not a wimp, I've bore 8 children without an epidural and I'm not a complainer, but if you show me a needle I turn into a puddle on the floor. The bad MRI experience was dealt with also but I won't go into the details. I also got to the point when one of my three Dr's wanted to examine me again, and I knew they would use the MRI before surgery because it was more accurate, I started saying no, not this time, I'm sorry. You're right on so many levels. As time went on I did get a little testy, not rude, just testy.
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I sent the part about your husband and the blood draw to my husband. It had me laughing hysterically. Hopefully it will improve his ability to be bad cop. Thanks for posting this!
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From my perspective, I'd like to add that anyone who is dx'd with BC check out BreastCancerLaserSurgery - why put yourself through such a hellish misery of mastectomy, lymph node removal, chemo, radiation, reconstruction, etc. Maybe i'm missing something, but there's no way in hell i'd go through such a barbaric procedure which still has a miserable cure rate. I had Laser Surgery, now going into year 8 with Stage 4 BC been told my six onco's best I could hope for was maybe two years, well ----looks like our illustrious medical geniuses are wrong again. I know my onco is peeved, keeps asking me what i'm doing, well, i'm doing his job - i'm saving my life, something the cancer industry is not interested in doing. There are many cures for this beast, you can't tell me, i'm here of my own accord, doing simple common sense proceodures, and oncologists scoff when I tell them my secrets. I'm totally disgusted, don't have any respect for any oncologist who won't do research and just rely on Protocol......
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renya,
So glad to know that you are doing well and are happy with the path you've chosen. I am very happy with mine as well. I have a fabulous oncologist who is very interested in saving my life. I had an equally wonderful plastic surgeon who did a great job on my recon. I have never had chemo either and am entering my 4th year at stage IV and remain NED. My life is pretty much as it's always been and beside myself and loved ones, no one is as thrilled as my medical team. BTW, I am the team captain !
Your experience worked for you and that is great. Let's live and let live, ok?
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Nope, no chemo, but I came close. I even had a port installed, which I ended up using for Aredia for two years and now just use for blood draws snd scans. I am sorry about your hair loss .
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Wow TonLee, the posts are older but relevant, sane and good advice. BC is a nightmare on a good day and most of us are struggling with the initial shock and of course, don't have medical degrees or speak the language.
I watched my onc draw out the % info and eventually drifted to a point where is was sounding like Charlie Brown's teacher (wha wa). Couldn't help but think of a time share salesman. I thought, gee she's done this same drill so many times that her passion has faded. I wondered what she saw when she looked at my tear filled eyes and lost expression. Did she even notice that I didn't understand? Did she care? Was she irritated because I didn't engage better?
So, thanks for your advice on standing up. I'm gonna practice what you're preaching!
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Ports... I'm having one put in a few days from now (Monday, 12/11/14). My surgeon will not be there... I was told "oh, Radiology can do that!" Is that true? How complicated a process is it? Gah. Hopefully I'll be asleep and not see anyone messing up!
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Being assertive is important. It's tough to have to be that way if we ordinarily don't like doing that, but with something like BC and all the procedures and treatments involved, I think it's got to be done. I've been totally stressed out trying to get things done... and I'm at one of those One-Stop-HMO-companies. You'd think it'd be easier! And they DO help with things like making appointments. And they are all nice and friendly. But, wow.
It's all a big eye-opener to me!
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