Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Lumpectomy Lounge....let's talk!

1219220222224225949

Comments

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Kathy, You may find your furball is very comforting, big or not.

    You do have the right to decide who, if any, should ever come visit/stay with you. If it sounds like too much right now, it probably will be. Go with your gut.

    HUGS!

  • 123justme
    123justme Member Posts: 169
    I forgot to add that I also had genetic testing done (Cancer Next). 32 genes were analyzed and all were negative. I called Oncotype Dx. The cost of the test is $4600 plus or minus a few dollars. They say that they cannot tell me what my out of pocket cost will be but before they do the test they need to have a req from the MD. If my out of pocket cost will be $100.00 or more they will call before they do the test. I may have to call my genetic counselor to see if she knows anything about the test.....

    Arghhh!!!
  • 123justme
    123justme Member Posts: 169
    My bother works for the FDA. He said that they can analyze the entire genome of a person for under $300.00!!!! This breast cancer thing is a pain in my arse!!
  • peculiargirl
    peculiargirl Member Posts: 44

    A pain in your arse?? They didn't operate on the wrong end, did they?? Winking

    sorry - couldn't help myself.

    Kathy

  • Horsegirl
    Horsegirl Member Posts: 78

    123justme, woohoo! Good news! A better weekend ahead.

    I developed an allergy to the dermabond. Doc said nail polish would take it off. I went the fingernail route ;) Was afraid the acetone would burn the red bumps.

    Waiting for a call back from OT - not sure how much axillary & upper arm tightness & pain is normal with SND. I'm at 3 weeks tomorrow. Still hurts pretty bad when I raise my arm.

  • 123justme
    123justme Member Posts: 169
    LOL! No but they will go for that next since I still need to have a colonoscopy!
  • peculiargirl
    peculiargirl Member Posts: 44

    OHHHHHH.... the fun never ends, does it??

  • octogirl
    octogirl Member Posts: 2,434

    123JustMe: yay!! That is such great news!!!

    I have the feeling I could be in a similar boat Monday re MO attitude towards oncotype, although my tumor is bigger than yours...which could make the MO less confident on what score would be (?). So, I've already thought about it, and have decided that I will ask for it, and ask for a second opinion, if the MO says no. I certainly would want to ask if insurance will cover it if MO requests it (I am almost sure it will in my case; it is definitely a question to ask your MO, in my opinion) I am *not* sure I will insist if insurance won't cover it, as Peggy says it is expensive, but will cross that bridge when we get there.

    OTOH, if MO does think chemo is warranted but won't order the test, I will insist on getting it, insurance or not. Yes, I will do chemo if necessary and try to keep smiling about it, but I sure as hell am not going to do it without an indication that it really will make a difference.


  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Octogirl, I agree about doing chemo without the Oncotype. However, something in the back of my mind says there are times when the MO doesn't need an Oncotype to know chemo is needed. So try to keep an open mind and listen to his reasons.

    Pester your insurance company, Ladies! They should have to give you an answer!

    HUGS!!!

  • octogirl
    octogirl Member Posts: 2,434

    PoppyK, what a story! Totally crazy!

    I'd definitely be up for a CA girls get together at some point!


  • 123justme
    123justme Member Posts: 169

    imageI guess getting older sucks but it sure beats the alternative! I wonder sometimes if all the confusion regarding treatment decisions is based on the almighty dollar. The cancer industry sure has a captive audience since we are fighting for our lives! ...and we pretty much stay in the game because of that little fact.... Here's Taz. She is guarding my bad boo-boo! LOVE HER

  • octogirl
    octogirl Member Posts: 2,434

    yeah, Peggy you are probably right that sometimes the MO will know. They do have the training we don't have, after all.

    OTOH, I need to trust the MO in order to be ok with his recommendation, and we aren't there yet, unless he can answer all of my questions and explain it. I am trusting person, really I am (most of the time :-)), but I also trust in science (I work in the research field, by the way), and if the science is available to help predict, I would hate to think that the fact that I am not independently wealthy is standing in the way of getting the peace of mind that a predictive test would bring. Of course I know that the tests only tell percentages, and nothing is guaranteed, but if the tools are out there that will help, I think we should be able to use them. If the test really won't help, I want the MO to tell me WHY it won't help, rather than just saying 'you don't need the test because we already know what the results are likely to be.'

    Just how I see it of course, so we shall see what happens at my MO apt Monday. HUGS to all of you for making all of this easier and for giving all of us a safe forum to talk about it all!

    xoxxo

    Octo.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    123JustMe, looks like my kitty when she hasn't licked most of her fur off (think she has allergies - on Benadryl). And they are comforting.

    Octogirl, Of course, your MO should have reasons for not ordering an Oncotype, just as he needs them for ordering them. The "why" is vital. Don't need paternalistic MOs in this fight. We need to be partners. An honest question deserves an honest answer. That being said, do give weight to his many years of experience, that is important, too.

    HUGS!

  • Midgiemoon
    Midgiemoon Member Posts: 75

    So I have the best husband ever! He adopted a 7 year old female beagle to keep me company! My kids are gone, and we work opposite schedules. I'm so happy! She's chubby like me so we'll be walking a lot!

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Midgie, that is FANTASTIC!! You and Tubalina will have many great walks. And rescue doggies are the best!

    HUGS!!!

  • peculiargirl
    peculiargirl Member Posts: 44

    Congratulations, MidgieMoon - enjoy your new cuddlebug!

    Kathy

  • PoppyK
    PoppyK Member Posts: 1,275

    Comfort pets are the best!

  • PoppyK
    PoppyK Member Posts: 1,275

    Here's a link to a "calculator" to determine risk reduction gained from different treatments. Many MOs use this to guide their treatment recommendations.

    http://lifemath.net/cancer/breastcancer/condsurv/index.php

    The more info you can provide, the more accurate the results.

  • Nash54
    Nash54 Member Posts: 699

    Peculiar girl....my sisters wanted to come when I had my surgery.  I thanked them but assured them I'd be okay.  I really didn't want to have company during that time.  I had my hubby and daughter here if I needed anything.  I just wanted to sleep a couple of days...then I was good to go.  

  • Ringelle
    Ringelle Member Posts: 175

    Hey all! Please excuse me for not being too social today! I have read all the current posts. I know some are celebrating successes and others are disappointed. I fall into the disappointed group today! My BS called at 8:15 this morning with my results and once again I had positive margins. I'm now scheduled MX on July 13. Still looking at all DCIS - nothing invasive but it just doesn't seem to want to end! BS had already been in contact with my PS to discuss schedules and the plan. Tomorrow begins round 3 of setting up doctor visits to figure out where I go from here! Part of me wants to just do a BMX but BS still seems to think it's excessive with DCIS. I'm just tired of this process and I want to cancel my surgery of the month subscription. My biggest fear now is starting all over again in a few years because it pops up on my left! I guess I will know more once I talk to the PS and determine if reconstruction will be immediate or delayed. When I first met with the PS he said he'd like me to loose another 25-30 pounds first but now he's saying he can do immediate reconstruct! I'm curious as to why he's whistling another tune now! I just want to do whats best - it just never seems to be clear cut with this stupid stuff! BS says I most likely will be able to avoid rads now but I'm not going to hold my breath! This seems to be the gift that keeps on taking! Anyway - I'm sure things will look clearer in the morning. I think I'm going to turn in early tonight and try to rest the brain! Well, on a positive note - I guess my seroma and sloshing will be resolved in two weeks regardless!

  • 123justme
    123justme Member Posts: 169

    Ringelle, hopefully after talking to all the physicians involved you will be able to make a decision that is right for you. Rest your weary brain.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Crap, Ringelle. That rotten especially when it's all DCIS. You have to be worn out - physically and mentally. I can't offer any advice but I can hold you (gently) in my arms and let you relax and share the anxiety burden with me.

    HUGS!!!

  • plumster1
    plumster1 Member Posts: 100
    So sorry to hear your news ringelle. You deserve some rest after that doozy. Hugs!
  • octogirl
    octogirl Member Posts: 2,434

    so sorry Ringelle, that sucks. Hope you get some rest tonight!

  • Horsegirl
    Horsegirl Member Posts: 78

    Ringelle, So sorry to hear this. No wonder you are weary. It does seem to go on and on. Good rest for you tonight


    Midgiemoon - what better therapy that a loveable pup! I have two cats who have basked in the glory of my convalescent days at hope - more lap time for them!

    I'm in Columbia area, so not far from you. We are blessed to be surrounded by so many great medical resources

  • Molly50
    Molly50 Member Posts: 3,008

    123Justme,

    Congratulations on your good news!!

    Ringelle, sorry about the need for more surgery. Take your time and choose the best path for you.

    Cal get together? I'm in depending on where.

    I finally managed to put on a soft bra. The only pain I have now is the axillary area . It alternates between stinging and an ache.

  • queenmomcat
    queenmomcat Member Posts: 2,020

    Oh, Ringelle!

    I too was dreading either facing life with one breast or trying to convince the surgeon to take the other one. My heart goes out to you. DCIS isn't supposed to be the surgery of the month club, and NOT having to deal with that bleep seroma is NO consolation. I stand opposite PontiacPeggy and wrap you with another set of cradling arms.

  • PeggyG6020
    PeggyG6020 Member Posts: 23

    Ringelle, FYI-when I had my lumpectomy, there was a pathologist in the OR with the surgeon. She checked the second margin, and it looked good, however, when I went for my post op- there were 10 tiny little specs of cancer that were spread randomly through out the second margin. So, re excision, and they found more cancer in a place that they did not see it on the mammo. I thought it was just standard procedure that a pathologist is in the OR for the first lumpectomy.

    I opted for a third lumpectomy instead of mastectomy, because I was one of the rare ones who had enough breast tissue. My big concern was that if the cancer came back, and I had no fatty breast tissue, the cancer would be in my chest wall. But, some people just feel better with a mastectomy, so you have to decide for yourself. I also recovered really quickly after the second lumpectomy, so I thought, I might as well try it, if there is more cancer, I can always do the mastectomy. So, that is how I mad my decision. I'm glad I did because the 4th margin, third surgery, was clear! Chemo worked for me.

    Also, having Crohns disease, I knew the masectomy woudl be a challenge.

  • Nash54
    Nash54 Member Posts: 699

    Ringelle....sorry things have been so complicated for you. I know you must be totally exhausted. 

    (((Hugs)))

  • PoppyK
    PoppyK Member Posts: 1,275

    Hugs Ringelle. I would ask questions, too.

    I had another thought about the pet boarding. Many places have "Doggie Daycare". This might be a great option because the dog could be at daycare when the DH is at work, then come home for the evening and night.