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  • KarenZ0305
    KarenZ0305 Member Posts: 487
    edited January 2013

    Cottontail I too am sorry you are still in pain. I to am still having my issues but I see my MO in 10 days and will talk to her even though my BS is the better one to talk to but I don't see him until March. Ins does suck (I do billing and the fights I've had with them!) but maybe you can call your BS and ask if they can give you a script for a CT scan to see what's going on? If ins allows? I would hate for you to wait if its something you might need a stronger IV antibiotic for instead of oral. Some hosp do that as outpatient (was discussed when I was in hosp).



    And your dr is an ass (sorry just my opinion). I have neuropathy in my fingers (not bad enough for Rx more annoying than anything) and it could last up to a year or longer!



    We should all right a book called "The Real Survivors Guide to BC. AKA the way symptoms really feel and how long they last" and donate all proceeds to this website!



    Ok time to put away groceries! Good day to you all and Cottontail keep us posted.



    Karen

  • 2FriedEggs
    2FriedEggs Member Posts: 640
    edited January 2013

    For those that can't sleep and can't get a sleep aid from your doctor, have you tried the Tylenol PM? My hubby had sleeping and pain issues and the doctor told him to take that before bed instead of prescribing any type of sleeping pill. My DH was very skeptical but he sleeps like a baby now. Infact if he forgets to take it and wakes up in the middle of the night, he  always looks to see what time it is before taking one for fear his alarm will go off and he'll sleep through it.

    Cottontail, that sucks that you are still having so many issues and can't go to the doctors. When I was still undecided about how I wanted to proceed my PS and I had a very similar discussion about revisions along with a lumpectomy.  As far as doing additional breast surgeries at the same time as the lumpectomy though, she said that she won't do any type of breast symmetry surgery, etc at the same time because too often after the lumpectomy the pathology report shows unclean margins  and the bs has to operate again.  She said its very important to make sure that all of the cancer is out of the breast tissue before moving things around to approve the appearance. When I ask why then, they could put tissue expanders/direct implants in immediately following the mastectomy she said because presumabley the BS removes all/most of the breast tissue so from that point if anything further shows up in pathology along the borders it would most likely be treated with radiation rather than additional surgery. It then made sense to me. What really stinks though is that it doesn't sound like your doctor wanted to take the time to make sure you were satisfied with their answer. I hope you get to feeling better soon and if you don't that you can muscle your way into the dang doctors office.

  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited January 2013

    Tylenol PM -- we cannot take anything with the PM if we are on Tamoxifen.

    http://www.drugs.com/drug-interactions/tamoxifen-index.html?filter=3&generic_only=

  • Cottontail
    Cottontail Member Posts: 374
    edited February 2013

    I used to take Tylenol PM plus melatonin every night, which would let me get at least a few hours of sleep. Did that for years, but as Joanne said, I can't take the Tylenol PM anymore because I'm on Tamoxifen.



    My MO said it would be ok "every once in a while," but my sleep problems are every night, for many years now.



    I'm still taking the melatonin, which helps put me to sleep but I wake up about three hours later. It also gives me nightmares.

  • Cottontail
    Cottontail Member Posts: 374
    edited February 2013

    A CT scan costs me about $500 out of pocket, which I can't afford and I'm trying to avoid. (MRI is twice that.)

  • Scorchy
    Scorchy Member Posts: 240
    edited January 2013

    Cottontail, I echo what Juneaubug did: fuck that oncologist!  And fuck this living in pain, crap.  I'm sure I sound like some kind of pain evangelist these days, but get a consult with a pain management specialist.  Pain drags you down and down and down.  I learned that when you have chronic pain (whether it is short or long term), you need a strategic approach.  Surely you don't need lip service from an onoclogist who clearly has no clue.  At the very least I'd go see the surgeon.

    Didn't mean to sound "lectury" there.  I sure hopeyou get some relief soon!

    Scorch

  • Scottiee1
    Scottiee1 Member Posts: 2,329
    edited January 2013

    Cottontail .....I have been having back issues and the constant pain certainly drags you down.....sorry you are going through this .....find someone who will listen to you. I'm about to fight with my Dr's over this.....when I take my anti-anxiety twice a day, I don't have any back problems, but he wants me just to take when needed!!!!!WTH I need them

    Next week I go for my results from my mammo and ultrasound and my boxing gloves are ready.

  • STLmom
    STLmom Member Posts: 21
    edited January 2013

    Hi everyone. I am one of the people who had a lumpectomy ,breast reduction and lift. I have been very happy with the results. I had the surgery in April. The breast surgeon and PS worked together  during the surgery. I had 2 lymph nodes removed. I was offered this option along with lumpectomy or mastectomy on one side. I had large DD breast and I thought it would be hard to have one large breast until reconstruction. They were able to take alot of the tissue out of the right breast which did not have the cancer. I have also always had dense breast and mammograms every year. the cancer showed up 2012. My onco score was 7 so I did not have chemo. I finished radiation in July. One of the advantages of the reduction was that smaller breast are less likely to have as many side effects from radiation. I did not have any major problems with radiation. Of course this is just my expierence and might not be the same for others. I go in Monday for first mammogram which makes me a little nervous because I  now have a set of breast that are different from all the other years. Happy new year to all of you. I hope everyone in pain starts to feel better soon.  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    sisters - can you please help me put in special thoughts for a good friend tomorrow morning? A close friend and colleague has some kind of suspicious mass in his pelvic area. Going for a CT scan and surgeon appt tomorrow. Was on the phone with him for a long time today and was brought back to those beginning hours of the unknowns and what ifs and horrors your mind plays on you. I hate hearing about anyone else having to live through those dark days... So any good words you can put in to help make sure this turns out to be nothing more than a minor inconvenience would be greatly appreciated. Thanks lovelies!

  • Scottiee1
    Scottiee1 Member Posts: 2,329
    edited January 2013

    Ramols....prayers for your friend....and strength in you to support her.

  • websister
    websister Member Posts: 1,092
    edited January 2013

    Sending prayers and good thoughts for your friend and for you, Ramols

  • KarenZ0305
    KarenZ0305 Member Posts: 487
    edited January 2013

    Ramols tell your friend to wear his big pockets tomorrow. I have a feeling alot of people will be with him!

  • Aruba
    Aruba Member Posts: 543
    edited January 2013

    Ramols.....done!

  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2013

    Cottontail, just dropping in here to share some breast lymphedema information with you.

    First off, breast lymphedema can be extremely painful, and for the most part OTC pain meds don't touch it. Doctors are very often ignorant of it and can easily fail to diagnose it or send you to the right person for treatment.

    Here's information about breast/chest lymphedema:
    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    And here's how to find a well-trained lymphedema therapist near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
    Please note that not every PT is qualified to evaluate or treat lymphedema, and you want one with lots of experience in breast (truncal) lymphedema. So call around. ANY doctor on your team can write you a referral, including your PCP or a Nurse Practitioner.

    Because of the extra warmth you're feeling in your breast you really do want to insist on a prompt evaluation by a well-qualified lymphedema therapist. Cellulitis (infection) is a serious risk if lymphedema is present in the breast, and once it gets a foot-hold it constitutes an emergency. You don't want to go there.Tongue Out

    Please get help soon. Impress on your insurance chimpanzees the serious nature of this situation, and don't let anyone put you off any longer.

    Be well! Gentle hugs,
    Binney

  • Tazzy
    Tazzy Member Posts: 2,546
    edited January 2013

    Cottontail - so sorry you are still in pain and I totally agree with Juneau "That's fucking bullshit!!!".  Bullshit beyond words.

    Ramols:  yep...sending positive vibes and I agree tell him to wear big pockets cos we will be there.

    Hugs to you all.  Fucking cancer !!

    I am off to a support group at our local cancer centre this evening.  One of the girls on this board (the Canadian thread) told me about it... if nothing else it will be great to meet a sister from here.  Work is great (not sure how long I'll be saying that for).   Wow, work and a social life again all in one week Laughing

  • Cottontail
    Cottontail Member Posts: 374
    edited February 2013

    Thanks, everyone.

    Binney, thanks for the info.  I've read through the LE forum quite a bit.  I saw a PT who specialized in LE treatment after surgery, and I saw her again four times for massage to help with cording.  I've had the base measurements done on my arms; I didn't ask her then what her experience with breast lymphedema were.

    Because my insurance plan runs February-January, but the out-of-pocket and co-pays run January-December, anything I do in January goes toward the new calendar year's out-of-pocket expenses.  Then those start over *again* in February, with the new plan year.  I absolutely cannot afford to see a doctor for anything in January.  I know my RO will be happy to write another PT referral for me, but I can't go until February.  

    Of course, my FMLA runs out in March, so it will be difficult to get excused time off work after that.

  • Scorchy
    Scorchy Member Posts: 240
    edited January 2013

    Well. it's 2:55am. All is quiet in Morningside Heights and I'm awake. Ugh.

    MLB: Great news about your dad!  Wonderful!

    Ramols: Good luck to your friend today.  He sure has a lot of folks rooting for him to pull through and thrive!

    Binney: Thanks for posting that information.  It was really interesting. I'm passing it on to a friend of mine. 

    So I had an appointment with the pain management doc today.  He's so young--I'm so old--and he's wonderful.  I had a nerve block two weeks ago and it wore off in a week.  I've been back in ye old pain chair since Saturday. Ugh.  I am really happy that it is not the lytic lesions causing this, but seeings how they kick started the whole thing I don't forget to cure them at least once a day.  And as painful as this lumbar spondylosis is, I'm happy to be alive to feel it!

    Since it looks like January and possibly February will be loser months for me, I'm going to call my boss this AM and chat about some work options.  I can't go back, but I figure I can at least work on strategic planning, reports, get some project started, etc.  Being out of work is, one one hand, everyone's dream.  But as I'm sure plenty of you know, that gets old quickly. 

    Some good news as well: got me a new oncologist.  After that meltdown, my former MO and the manager of the breast center worked with me and now I think things will be just fine.

    Hope you all have great days wherever you are!

    Scorch

  • Scottiee1
    Scottiee1 Member Posts: 2,329
    edited January 2013

    Scorch....good news about your new MO...I hope he/she treats you better.....dealing with constant pain just brings you down so much....I 'm praying this will be short lived . Hang in there.

  • liefie
    liefie Member Posts: 2,440
    edited January 2013

    Scorchy, good for you on finding a new oncologist. My sincere wish is that you will get that pain under control. Nothing wears you out and makes you as tired as constant pain. Young docs are often more sympathetic than older ones who have seen so much. Over time many of them lose that sensitivity, I find. Hopefully your boss have some projects for you to do at home. Best wishes!

    Ramols, I'm sending good vibes to your friend, and hope it is not too serious.

    Cottontail, I am so sorry to hear about your problems and your situation. It is three more weeks till February, which seems a long time to be in such pain. Isn't there anybody who can help you out so you can see a dr? I am Canadian, but maybe some of our American sisters know where you can go for financial support. Hopefully they will weigh in.

  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2013

    Cottontail, since you're in waiting mode, here's information to help you monitor yourself, so you'll know when to act quickly:

    http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

    Hoping you get answers and pain relief soon!
    Binney

  • Cottontail
    Cottontail Member Posts: 374
    edited February 2013

    I can't get financial assistance. I fall into that category of making too much to get help but not enough to be able to pay.



    Paying for all of my treatments last year wiped out my savings. At this point I hope I don't live until retirement age, since my retirement money is gone now.

  • kjiberty
    kjiberty Member Posts: 1,385
    edited January 2013

    Ramois:  Sending prayers youir friend's way.

    CottontailL  Undecided

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Thanks all for your support for my friend. Told him to wear his big pockets. Surgeon doesn't think its a malignancy but he has to have some fairly invasive surgery next week to either remove it or Biopsy it depending on how it looks.



    Have been remiss in really commenting on folks posts but between all these darn f/u appts and work - not to mention still sick kids and hubby - very little time on my hands. So very tired. Looking forward to a restful weekend. Thinking of you all and sending big hugs.

  • Scottiee1
    Scottiee1 Member Posts: 2,329
    edited January 2013

    Ramols....he is lucky to have such a caring friend...sorry about all the flu going on in your family...make sure to take care of yourself. My son has just come down with the flu...sort of freakin that I might catch it.....just when I'm starting to feel a bit better...lol

  • RoulaG
    RoulaG Member Posts: 239
    edited January 2013

    Ok ladies quick question. Has anyone had their period come back and last for more than a week? Mine came back last month and seemed pretty normal, a little longer than I am use to by pretty normal. This month it is like the never ending period. It is not heavy, just won't end. Any thoughts?

  • KarenZ0305
    KarenZ0305 Member Posts: 487
    edited January 2013

    RoulaG- are you on tamoxifen? My MO advised me if I start getting abnormal bleeding to let them know ASAP.

  • Scottiee1
    Scottiee1 Member Posts: 2,329
    edited January 2013

    NYC.....sorry a bit late here with the reply to the chocolate .....thank you ...loved every bite.....please keep this a secret as I am one of the cheerleaders on the 2013 survivors

    thread. Many of the gals there are working so hard to shed the lbs....don't want them

    to know their cheerleader is pigging out on chocolate.....lol

  • juneaubugg
    juneaubugg Member Posts: 951
    edited January 2013

    Scottie; your busted you big 💩! 😋 What kind of chocolate. Dark chocolate is good for you. Wow listen to me.... Living procarisly through you! LOL!!

  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited January 2013

    I was going to say the same thing ... Scottiee you forget that us 2013 survivors started on the 2012 sisters ... Busted as Juneaubugg said!

  • Scottiee1
    Scottiee1 Member Posts: 2,329
    edited January 2013

    June.....love the new avatar ....I wish I was so computer savvy like you gals, because I do have a good sense of humour (comes from being Scottish) I would give you gals some great avatars to keep you laughing.



    Ok...busted....yikes....BUT I only eat dark, VERY dark chocolate....is this ok?????



    PS I'm not laughing at this one....you look gorgeous 💃

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