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August 2011 Surgery Group

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Comments

  • dawmson
    dawmson Member Posts: 17
    edited September 2011

    I traveled for work last week and haven't been on here for a while. I'm trying to get in as much normal life before I start rads in a few weeks. 

    Dixiebell - thanks so much for the cording info. I came on here to ask about it and was great to see your post and others' posts on dealing with it. I have it under my armpit and extending about halfway down the inside of my arm; it's a tightness/pain when I stretch my arm up over my head or if I extend it straight out with my palm facing out. Really frustrating to have to deal with all these side effects of SNB. I also still have numbness. At 4 weeks post-op I'm wondering if it will ever go away.

    I have a question about rads and the heart. I went in for a simulation last week at the RO office and afterward I got a message from the RO that I need to come back and get hooked up to a breathing machine that monitors my breathing and heart position. I don't fully get it but it means they had trouble figuring out a way to give me rads w/o hitting my heart. Scary! Has anyone else gone thru a breathing test? I'm freaking myself out about the idea of radiation getting thru to my heart.

    I also had a scare last week when I realized most of my left breast was a hard lump and that my nipple was starting to retract. It's better now but I'm going to ask the doc about it on Thursday when I go for my followup. Is it scar tissue? Cysts? Funny how my mind works, I immediately went to the "OMG is it cancer again?" place. 

     

  • joan811
    joan811 Member Posts: 1,981
    edited September 2011
    Dixiebell, Thanks for the description of cording.  I am still not sure where this is going.  I have had tenderness down toward my elbow.  I am doing ice, massage, and Advil and the swollen lumps are not getting worse.  I am glad I know about the post-surg delayed symptoms
    js1960, glad to hear you are doing well and back to work.  I went back a week after lumpectomy and wow was I surprised at how tired and achey I felt in the afternoons and evenings.   It gets better.
    I hope all the ladies who have started chemo or radiation this month are feeling OK. 
    Blonde, good luck with the procedure - I hope this will help you feel better and move forward to treatment.
    Hugs and thoughts to you.
    Joan
  • bobeena
    bobeena Member Posts: 46
    edited September 2011

    Hope your incision will heal quickly now blondelawyer ... and treegirl.  I can't imagine how frustrating hat would be.  I hope you can move on to the next step in your treatment very soon!

    Dawmson,  hope your doc has only good things to say on Thursday, and that it's just normal healing.  I wonder how long it takes before our mind quit jumping to that place.  I have to stop those thoughts often.  I can't comment on radiation and the heart, but hopefully someone else could.  Was your tumor in the inner quadrant near your heart?

    Sleep well everyone

  • susanella
    susanella Member Posts: 18
    edited September 2011

    Hi,

     I was just diagnosed with invasive ductile carcinoma in the right breast.  I'm still in shock.  I live on Long Island and would welcome recommendations for a top surgeon in NYC or Long Island.  I'm really scared.  I have no family history so I have no one to get advice from. Thanks.

  • rockym
    rockym Member Posts: 383
    edited September 2011

    susanella, I am so sorry you had to come here.  There are many women who have been in your shoes and many here going though these things right now.  There is a forum under Just Diagnosed and also one called IDC which will give you lots of great information.

    I can't tell you about any surgeons over there since I am west coast, but it is easy to google these guys and then check out there "health grades" and also their status with the Medical Board which is public information.  Perhaps your OB/GYN or family doctor knows someone they trust.  Usually this is where you begin.

    It's probably a good idea to also look at a Radiation Oncologist (RO) too.  This is someone who can give you opinions, perhaps do a BRCA test and guide you should you need them.  My RO was a wealth of information and although I had to get a medical oncologist (MO) in the end since I did need chemo, the RO was ready to treat me after surgery if I needed her.  I went with a lumpectomy and healed in a few weeks.  My breasts look great, although my hair is soon to be gone.  PM me if you need more information.  Good luck!

  • susanella
    susanella Member Posts: 18
    edited September 2011

    Hi Rockym or whoever else is out there,

     Thanks for your support.  I am so confused and scared.  The reading is overwhelming.  I got copies of my mammo and ultrasound films and reports and will be picking up the core biopsy path report and slides later this week.  The RO told me that a surgeon will probably want an MRI first.  I called 2 surgoens and made appointments for a first and second opinion within the next 2 weeks.  Question:  Pardon my ignorance, when is it determined if and how many lymph nodes may be involved?  Is this in the core biopsy path report or only after MRI or only after surgery?

     Thanks.

  • rockym
    rockym Member Posts: 383
    edited September 2011

    susanella, I posted some stuff to you in the 2nd Pathology Opinion thread.  Never ignorant... always question.  You are your advocate!  Some BS do MRI, some do not.  All depends.  Lymph nodes can show, but not always.  Lymph nodes come up in the final path as to being positive or negative.  Glad you are seeing 2 surgeons.  Pick the one who you feel most comfortable with, who answers all your questions and who seems to really give a damn about you.  My BS was considered a top doc out here and he had a great sense of humor.  I happen to make light of everything in life so I needed someone who could cut well and crack a joke.

    I had an MRI to look at the other breast (my choice),  My BS said it was going to show a false positive.  It did.  Had another core biopsy.  It was B9.

  • chulita
    chulita Member Posts: 16
    edited September 2011

    **Susanella**

    I am in Long Island as well. I PM'd you. Sorry you have to be here also.

  • blondelawyer
    blondelawyer Member Posts: 104
    edited September 2011

    Wow, my incision sites look SO much better after the procedure yesterday.  The surgeon trimmed off some of the tissue and closed it back up and it looks fantastic!  I have staples in but everything seems closed and healing well.  I see him again on Monday and will hopefully get the staples out and then can start radiation.  

    I am still getting fluid--he drained 40 ccs from one side and 30 ccs from the other.  He's not worried about it.  Thank goodness for numb skin to make the extraction easier!

    I hope that everyone is having a good week! 

  • NancyJill
    NancyJill Member Posts: 127
    edited September 2011

    My Lump/SNB procedure seems to have been quite successful, but little pains feel better with a little masage. Had port placed yesterday and first Herceptin today. Needed a nap, that's all. Lucky to have no cording or LE so far. What I have done is gain weight from stress-related overeating. Sigh.... I'm going to have to change my bad habits. I think I need to see a dietician in order to get psyched for reducing my risk of recurrence!

    BlondeLawyer: I'm so glad that the procedure helped so much! You deserve to be able to move on!

  • NancyJill
    NancyJill Member Posts: 127
    edited September 2011

    Susanella, Sorry you have to join us. I, too, had no family with this. Yes, a shock! It is okay to slow down a little. You will learn what things mean soon enough. MRIs do sometimes change the treatment plan, and mine showed a spot they then had to biopsy in the other breast. However, if it had been a tiny tumor I would have wanted to know. It might have changed my treatment decisions. We are going to be all right! You'll know a lot more after the pathology from the biopsy comes back. Surgery was where my BS decided how many nodes needed to be checked and the pathology from surgery gives the final result on nodes. 

  • mags20487
    mags20487 Member Posts: 1,092
    edited September 2011

    Susanella...you have come to the right place for support and understanding for the journey we are all on together.  I live in Florida so cannot help with surgeon suggestions.  For me I was sent for a biopsy of left breast and lymph nodes as these were areas of interest from the ultrasound and mammo.  The doc who did biopsy only did breast and said...they are just going to take the lymph nodes out anyway...this was before the path came back mind you that it WAS indeed cancer.  Anyway...they will most likely do a sentinel node biopsy to determiine if you have cancer in your lymphs.  If that is positive the surgeon will then remove additional lymph nodes until he gets some that are cancer free,  I had 18 removed on the left with only 3 positive and so far all my tests have come back to show no evidence that it has spread to anywhere else!!  I know how scary it is in the beginning but once you have your treatment plan in place it does get easier to deal with it all. You will see that many of us here have no family history or risk factors other that we were women and had breasts.  My Oncologist recommends the BRCA test for any woman under 50 to determine if it is indeed passed thru the family and the results can make a big difference in your treatment plan and options so be sure to ask for that based on your age.  I wish you well and never think that any question is a stupid one.  I did not even know there were different types of breast cancer before diagnosed.

    Maggie

  • lilylady
    lilylady Member Posts: 478
    edited September 2011

    Blondelawyer-glad you are looking and feeling better. As far as the drainage-she removed 46cc/27cc yesterday. It was the 12th time since having my drains removed. Unfortunately, unlike you, it hurts like hell when she sticks that numbing needle in. I did not lose the feeling around the incision area. I healed up great on the outside-never had any problem with that. She keeps telling me everything is fine-some people just take way longer. I am 3 weeks past when I was supposed to start the Rads.

      I talked to the RO yesterday. I am worried about getting outside the optimum window for getting them. He said i am fine for now (sx was Aug 8) and hopefully we will get started soon. He said he can;t do a setup with my skin floating around (because of the fluid). BS also says the skin could even slough off if I tried Rads while still draining. She wants me to be at less than 10cc on each side. It is making me nuts!! Especially since I don;t see anybody else posting about this much drainage.

  • dogeyed
    dogeyed Member Posts: 84
    edited September 2011

    LILY, do me a favor and check in with your breast cancer doc and inquire about all these delays with getting rads going.

    SUSAN, I'm sorry you have to be in here, but you will find lots of support.  I will be interested to hear what your treatment plan will be, it varies depending on various things like size of growth, you may get to skip a step or two.  If it's any help, IDC is one of the most common breast cancers, with very good response to treatments. 

    DAW, I hope your doc gives you non-scary response to the way your boob is doing right now.

    BLONDE, I am SO relieved they FINALLY got your wound straight!  Good grief, that was a terrible little nightmare you were in there for a while.

    ALL, on my endless tooth saga, finally I got two good night's sleep and finished my antibiotics, and my mouth is feeling almost normal now!!!  I actually had enough strength at last to do my laundry this morning!  I've been putting it off forever.  I went online to see if there were pics of people who had a funny-looking scar appearance like me, came across some examples from "The Scar Project," I know you all have heard of it, guy took B&W photos of women w/cancer scars, and yup, thar be several ladies with a scar that looked just like mine.  All the best, sisters, GG

  • lilylady
    lilylady Member Posts: 478
    edited September 2011

    dogeyed-I actually won tickets to The Scar Project this weekend. It is in Cincinnati for 4 days. I had to write a short essay on why I should win free tickets-they sent me an e-mail today telling me I had won. The women featured are all under age 40-it is to raise awareness for the 10,00 women under the age of 40who get BC. I wish it was for the opening gala with all the great food and wine...guess I will do the general admission and buy my own food.

       I am real curious what peoples reactions will be to seeing those pictures. My own scars still horrify me and I lookat them every day. I don;t think even the worlds best photographer could make me like them better,

      I think my one scar looks like crap-big old buttonhook thing. BS gave me a half-ass explanation about following the fat since I was so vehement about no dog-ears because I was having no reconstruction. I swear i think they let an intern do 1 of my sides!! I think it was a total screw-up.

  • joan811
    joan811 Member Posts: 1,981
    edited September 2011
    Hi all,
    (I posted this also in Calling all Stage 1 sisters)
    My thoughts are with those who are new here.
    I got my onco score yesterday - 13 - on the low side, thankfully.  My oncology group uses a lower number for intermediate.  I was told because I am on the low side of intermediate numbers that I can choose chemo or no. The onco is leaving it to me.   There is a 7% chance of recurrence in 5 yrs. with chemo and a 9% chance without chemo.  I would get CMF x 8 every 3 weeks followed by rads and arimidex x 5 yrs.  I am leaning toward just the rads and Arimidex.
    I was supposed to call with my decision today but cannot do it yet.  I will try to figure it out tomorrow.  Sometimes I feel like this isn't happening.    I am not sure why I need 8 sessions...wish it were only 4..
    I am not looking for opinions on what I should do, just how I find the path.
  • rockym
    rockym Member Posts: 383
    edited September 2011

    Hi Joan, I picked chemo, but ONLY because of node involvement (although they were micromets which are now considered much less important these days), my age (46), my Oncotype at 22 and the fact that I have a 13 and 9 year old.  My two MO's agreed to "chemo light" for me.  At first they wanted to do TACx6 which can mess up your heart.  The A is tough stuff.  In the end it was a compromise.  I'm now doing TCx4 and so far after 1 infusion it appears manageable.  I just have to stay on top of the SEs and of course I'm still waiting for my hair to hit the ground.

    I would ask them WHY CMF.  I would ask them WHY 8 treatments.  Your dx is screaming to me that you had what I call "beginner cancer."  I feel that way about myself too.  Have you had a 2nd opinion yet?

  • joan811
    joan811 Member Posts: 1,981
    edited September 2011
    Chulita - I was wondering how you are doing (am from L.I. as well)  Do you have a treatment plan?
    Susanella - Sorry you have to join us - I wish I were the last one to ever be diagnosed.  You are asking all the right questions.  I sent you a PM and if you want further Long Island info, just ask. 
    I had a number of names given to me -- I had to focus on what made sense.  When we found the right doctor, we knew right away and scheduled surgery.  Not to say I wasn't confused on everything else.
    GG - good news that you are feeling much better.  My oral surgery is next Tuesday.  grrrr but I am very pleased with the dr. I chose. 
     Nancyjill  - you are so positive in your attitude toward treatment.  Best wishes throughout treatment and recovery.
    Blonde - glad to hear you are finally healing.  Good thoughts go your way.
    Lily - It must be so frustrating to have results that do not seem to be the best they could be.
    Thoughts and prayers for your healing and moving forward to treatment. Have a safe trip to the Scar Project and know that you are never alone.
  • treeskier
    treeskier Member Posts: 21
    edited September 2011

    Joan, I just went through that decision. I went to a very experienced and reputable MO, who told me I should seriously consider chemo because it would improve my chances by about the amount you were told (my chances are a tad worse because my oncotype score is 18).

    My husband and I went home and he went to work tracking down the research behind the oncotype graphs, and trying to get a deep understanding of it (he has the training). The graphs from their research show no chemo benefit for the really low scores, if you look at them in the oncotype dx info. The tamoxifen-only and tamoxifen-plus-chemo lines are together and parallel. Then the lines separate, with chemo giving a huge benefit to women with high scores. The question is, where's the threshold below which chemo doesn't help?

    One great place to go for treatment pros and cons and research reports is the other part of this breastcancer.org website. It is amazingly informative and very easy to navigate.

    I read up on the issues and then went to another MO, a top researcher at a university cancer center. He gave me similar estimates with a 2% differential, but he also told me this. The huge Tailor X study (I think it's 10,000 women) that's being done now took the women who had oncotype scores between 11 and 25 and randomly assigned half to get chemo, half not. He pointed out that if there was compelling evidence that chemo would save their lives, they couldn't randomly withhold it -- it wouldn't be ethical. Scores ten and below automatically did not get chemo. He told me that with my numbers, I shouldn't see it as a huge life-or-death decision. He said all the evidence points to there being as a good a chance that it wouldn't help me, as that it would. He also said I should weigh the long-term health risks of chemo in my decision.

    In the end I had to make my own decision, and you'll make the one that's right for you. I was glad I talked to two different doctors, and I've heard that a lot on breastcancer.org threads.

    Incidentally, the same doc predicts that as time goes by, the AIs will turn out to have an even bigger impact on survival for us ER+/PR+ women than has been proven so far. He really emphasized taking it daily. I am about to start on Femara (waiting for mail order Rx... seems slow!) and hoping I won't have side effects.

    Best of luck to you, and I hope you are able to find the information and support you need to make your treatment decisions. It seems like every woman with bc has a unique situation!

  • chulita
    chulita Member Posts: 16
    edited September 2011

    Hi Joan - im doing good. Had a busy week and am looking forward to my 1st chemo tomorrow. Im hoping for uneventful as its the only way ill be able to get some quiet hours in this week LOL. Ill be doing TCx4 followed with 5 yrs of tamox.,live in Deer Park. Hope you are well.



    Well wishes to everyone

  • joan811
    joan811 Member Posts: 1,981
    edited September 2011

    Hi all,
    Thanks to each of you who shared your oncotype scores and decision making process about chemo.  I have read every word and am still looking for my comfort zone.   I know it sounds like a blessing to have  been given a choice about chemo.  The dilemma is the unknown and unseen - those cells that may have escaped.  
    I'm having a 4 day week end for Rosh Hashanna in NY, and spent most of my first day doing research on line and feeling out of control again.
    Have a good night, everyone.
    Joan

  • dogeyed
    dogeyed Member Posts: 84
    edited September 2011

    LILY, wow, what a coincidence.  I am glad you will see the show.  From certain angles, my scar looks like a shark bite, that's for sure.  In fact, a nurse got mixed up when I went thru the list of all my diseases and devastations and mentioned my shark bite.  She thought I was serious!  Smile.  GG

  • mags20487
    mags20487 Member Posts: 1,092
    edited October 2011

    Almost 6 weeks out from surgery and both my arms have developed cording.  errrr..So irritated.  Going to ask MO any suggestions on someone in the area that can help with this.  Must have lifted something I should not have.

    Maggie

  • Eema
    Eema Member Posts: 403
    edited October 2011

    Mags, try arnica oil. I've been using it and they have softened.



    We just finished 3 days of new years celebration here, happy new year to those of you who roll that way! I have gained SO much weight since my surgery. Well, so much for me, which is just enough that my clothes don't fit me. I don't like it when my fat clothes are tight! One thing they didn't give me with the cancer diagnosis was a book that would explain every thing that was going to happen, including my @ss becoming Kardashian! No one told me! Or about cording, or about how much I'm disliking my one-step inflatable boobies. I can't wear a bra because one is in my armpit, and the bra hurts! I see the PS Monday morning, and Im going to plan my revision! Yeah!

  • dixiebell
    dixiebell Member Posts: 170
    edited October 2011

    Well ladies its back to traveling for work tomorrow. Its hard to believe it has been 6 weeks since my surgery. I am scared of flying so much with lymphedema concerns but I have my glove and sleeve. Cannot wait for the hundred questions that will come with that. Still have my cording issues too. I am so sad I won't be able to go to PT anymore as they are not open on Fri-Sat. Just my luck. Hope everyone is enjoying the cooler weather. It is helping with my hot flashes!!! Thinking of you all everyday!!!

  • sarasowise
    sarasowise Member Posts: 32
    edited October 2011

    Thought I'd check back in here.  I had second surgery (node dissection) and started chemo TAC X6 on Sep 19th.  It The chemo really has been kinda rough.  Tired and nauseous most of the time, Hoping to feel better this week before next treatment.  I noticed a few of you talk about cording.  Does anyone have more of a seroma?  Like a lemon in the arm pit?  I had one after first surgery and then it was removed or drained during second surgery.  Has anyone had one drained?  It feels very odd with feeling I have left under arm.  Hope everyone has a nice Sunday!

    Sara ♥

  • Debbyw
    Debbyw Member Posts: 5
    edited October 2011

    Hi all!

    I was DX on aug.15th with IDC and had a pos. mass in each breast, so on Aug. 31st I had a double mastectomy with immediate reconstruction. All of you women seem so strong! It has already been month and I'm totally fatigued and still painful. (I think the expanders are adding to the pain) I'm glad I found you all, it's comforting to know I'm not alone! Sara, I have the same lemon shaped seromas under each arm, but the PS can't drain them because of the expanders. What is the feeling you are experiencing? And what is "cording?"

    thanks everyone, Debby

  • michelleshorr
    michelleshorr Member Posts: 1
    edited October 2011

    Michelleshorr BMX w/TE August 22

  • Eema
    Eema Member Posts: 403
    edited October 2011

    Hi Debby,



    So sorry you have to be here, but welcome! I had my BMX w reconstruction on Aug 2 and I'm still fatigued and tired! They amputated our boobs-- it takes a lot to heal from that!



    I don't know about the other girls here, but I feel strongest when I'm with other women who have had or have BC. We're all in this together!



    Cording, I beieve, is a type of scar tissue that presents like a cord. It is very painful, at least in my experience!



  • Debbyw
    Debbyw Member Posts: 5
    edited October 2011

    Hi back to you Eema, and L 'Shana Tova!

    I actually do not "roll" that way, but it is a very beautiful piece of your faith I figure since my Grandfather was Jewish I get to celebrate too!!! Hey, I read up on banding and found out that it is actually a band of soft tissue that runs usually from the the axcilla area down your arm and has to do with the lymph vessels. Lymph node removal is usually a causing factor. They said that stretching under the care of a physical therapist might help. I wonder if you to suffer from a "seroma" which is serous fluid that fills in the now empty area where the breast tissue was. This causes very tender swelling around the areas where your expanders are not. Mine are under my arms and it is quite uncomfortable to wear a bra. Anyway thank you so much for the welcome!

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