Waiting for ER/PR status, tx options

libby
libby Member Posts: 165

I'm going nuts right now waiting for double mastectomy.  I was diagnosed with DCIS ER/PR negative last year and had a lumpectomy.  I have been monitored closely and in another area of my breast, DCIS of a different grade and tiny amount of IDC was just found.  No ER/PR testing was done because the sample was so small, waiting for the surgical specimen instead.  My surgeon says this is not really a recurrence but something separate.  I've been trying to get info on the different treatment options if is ER/PR neg vs. pos.  Seems that as ER/PR neg. there are a lot less options, and they don't do oncotype testing?  Wondering what the chances are that this IDC could be ER/PR positive.  Anxious to hear from anyone with experience with this.  Thanks

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    Hi Libby - I honestly don't know the percentages of IDC that is ER positive - I know it's a large number but don't know the specifics -  I'm sorrry that I don't have data to help you. What I can do is hold your hand while you're waiting for your surgery and the pathology from the surgery. When is your mastectomy scheduled for ??

    ER/PR negative responds really well to chemo -   ER/PR positive has hormone therapy (and sometimes chemo - and you're right - the oncotype DX test to help determine if you will benefit from chemo or not).  

    The waiting sucks ...  it's the part of this journey that was the hardest for me .. thinking of all the what-ifs   - that not very productive though as our minds seem to want to focus on the worst possible situation ... don't know why that is.  

    Take a deep breath, then another one - and tell yourself the worrying doesn't help ...  focus on what you need to do before the mastectomy and prepare for that .. 

    Hugs,

    Doreen 

  • libby
    libby Member Posts: 165
    edited March 2009

    Thanks Doreen, I know you're right - waiting is difficult, can't really focus on work or other things very well.  I think I try to prepare for the worst so that I don't have to go through the devastating feelings of being blindsided when things don't go "the best".  My surgery is scheduled for March 24 and I haven't even really thought about what the surgery and recovery will be like - guess because I know I need to do it so whatever it is like - it is what it is, and I'll do it anyway.  I will try to focus on what I need to do to get ready and the appointments for different things, and try not to think about the findings too much.  It is kind of a bummer, but I have a trip scheduled with my sister that can't be changed, 4 1/2 weeks after surgery - we're supposed to travel to Europe and I'm trying to also decide if I should let her know to find someone else to go with her.  If all goes well, it would probably be a welcome diversion.  I put a question out there to see how people were feeling at that point after a bilateral mastectomy, but I've had no response yet.  Did you have a mastectomy and when were you back to doing everything? Thanks for your kind response.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    Hi Libby -  I had a lumpectomy - so sorry I'm not able to help you with how you'll feel 4.5 weeks after your bilateral mastectomy.   I'm sure that you'll get responses from those that have had that surgery though to help you plan for what your recovery will be like and how you'll be likely to be feeling after the surgery -  that trip to Europe sounds awesome -  I hope you'll be able to join your sister and see some beautiful sites. 

    Gosh - you sitll have a couple of weeks to wait before your surgery - and then the wait for the pathology from the surgery ...  I think I'd be pulling my hair out! 

    Hugs,

    Doreen 

  • choward183
    choward183 Member Posts: 62
    edited March 2009

    Libby...I had a bi-lateral mast with tissue expanders Feb. 6, 2009 I had four drains (my breast were large "G" cup), the drains were removed 1 1/2 week ago and I am driving  and moving around actually I am doing very well.  Keep in mind that everyone is different, did you speak to your doctor about traveling?

  • choward183
    choward183 Member Posts: 62
    edited March 2009

    Libby...I forgot to mention.  You will need a lot of pillows!!! I still sleep with them.  I have 8 pillows on my bed.  I sleep in a propped up position, and I have pillows under my arms.  After the drains were taken out I was able to sleep the entire night without waking up every 3 to 4 hours. 

    Someone suggested from this discussion board to use pillows, and it was like a miracle for me! 

    Also, I did not lift a finger when I came home  from surgery. You will need someone to help you.  I have a strong support system.

    Blessings,

    Carolyn

  • libby
    libby Member Posts: 165
    edited March 2009

    Thanks for the suggestions and support.  I am making a list from everyone elses experience.  It helps a bunch.  I will see my surgeon again next week, I'll ask about the travel, and figure out how I can get my luggage moved around.  When I saw the surgeon the last time I was just trying to decide mast. or bilateral mast. didn't talk about much else.  The tour guide even said I can cancel and be substituted even 2 weeks or less before, so that takes the pressure off.  I will remember the pillows and I have a recliner to use as well.  My daughter has volunteered to come and help my husband when I first get home.  She just had surgery with drains, and I was there to help her,  so it is all familiar to her.  Nice to see your mature children step up to help and be supportive!  What about what to wear when you come home, and out and about while waiting for reconstruction?  Anyone have a Softee Two?  Or something similar?

  • ginagina
    ginagina Member Posts: 327
    edited March 2009

    Hey there - I just sent you a PM.

    In the meantime, I bought a Softee at Nordstroms (actually they dont carry the Softee, but they have an equivalent, and they will handle all the insurance paperwork) and it was fantastic for the week with the tubes (it really does help keep all that stuff under control); and pulling it up from the bottom (as opposed to over the head) was a godsend.  However, once I lost the tubes, I also stopped wearing the softee -- something about the elastic around the middle just starting to irritate me, and I was comfortable wearing my regular clothes with just a regualar tanktop underneath

  • libby
    libby Member Posts: 165
    edited March 2009

    Gina - Got your PM but couldn't figure out how to respond.  New stuff to me.  So you graduated from the softee-type thing to a tank top.  I'm trying to start planning what I'll need, and maybe doing some gardening before I can't anymore.  Hate to look at a weedy yard when I can't do anything about it.  Thanks for the practical suggestions.

  • ginagina
    ginagina Member Posts: 327
    edited March 2009

    Libby - no worries, this site gives me fits sometimes too. If all else fails, you can click on a members name and there should be a link on the right side that says 'Send a Personal Message' or something like that.

    Yes, my softee, while good for recovery seems too much now. I think it is the 'shelf' that I just found irritating. Plus, if you don't have the tubes, then these little pockets just add unnecessary bulk. I am not comfortable, however, just with a shirt (must be all the years wearing a bra), so now I were a tank top under everything - whether its a blouse or a sweater.

    You will find yourself gravitating to tops that have buttons or zipper up the middle because pulling anything over your head is a bit of a challenge. Post surgery, they will tell you to start doing arm/shoulder exercises and its because your instinct is to protect your body, you will hold your self rigid, and your arm/shoulder muscles get really tight. Or so says both Harrington (who checked me out of Overlake the day after) and Clarfeld. 

    Hope you can get some gardening in before the weather turns again Smile Although I have heard there is the possibility of snow this Sunday, we had freezing, slushy rain here today in Bellevue!

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