OK to wait?

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chele
chele Member Posts: 1,465
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I've just been diagnosed with IDC.  Found the lump Oct. 3, it's been test and wait ever since.  I'm still waiting on my HER2/neu results and the results for the MRI I had Friday should be in this Monday.  After my doctor gets the results for everything we'll have a consult and discuss my treatment options.  There's a lot of details I don't have right now so I don't have any idea how that discussion will go!  But what I'm thinking is it's been 5-6 weeks since I've found the lump, and I still have it.  It's grade 2, 1.6cm.  I'm thinking I'd like to postpone surgery until after the first of the year, unless my doc is adamantly against it.  Does anyone know if this is something I should even ask for?  I'd just as soon not be sick for the holidays, and it would only be for a few more weeks.

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  • idaho
    idaho Member Posts: 1,187
    edited November 2009

    Why do you think you will be sick for the holidays?  if you had the surgery next week  (whichever surgery you chose) you would probably be fine and dandy for Thanksgiving- no chemo or rads are usually started until at least a month after surgery so you have time to heal- so that would be after Christmas time. That is one thought I had.. the other is -- you will probably be fine to wait also.  Most doctors say by the time you can feel a lump it has been growing for years..  what is another 6 weeks?  Tough decision... there will be more postings from other women I am sure that can maybe help you decide..  Peace to you .  Tami

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited November 2009

    chele

    for what it is worth-I had a lumpectomy last year- two days before thanksgiving--- I was fine for the holidays- a little tired in the first week, then that passed.  I really just wanted it OUT and could not imagine waiting any longer (it was 3 weeks from dx to surgery-- that was too long for me!!!lol).  there was no clinical reason for me to rush, it was more psychological... we were gathering treatment info over the holidays and I started my treatment after the new year.... if you do have the surgery- you won't be sick-- if you have treatment, you won't be sick---- you might be tired, but you won't be sick.

    good luck

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  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited November 2009

    I had a lumpectomy a couple of days before Christmas..can't say that I would have done it

    any differently..

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  • chele
    chele Member Posts: 1,465
    edited November 2009

    Thanks everyone! 

    When I first found the lump I wanted it out right that second!  Diagnosis? Who cares!  Just.get.it.out.  Now that I have a diagnosis and I've gotten accustomed to the test and wait the sense of urgency has tempered quite a bit.  I thought I'd be sick from radiation and/or chemo, but I see now that the holidays will be well before radiationor chemo.  I guess there's no reason to wait! 

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2009

    I found my lump in May of 09.  Didn't have surgery until October 21. Dx'd  August with Grade 3, multi-focal, HER2+, 3.4 cm IDCl.  And, at the time of surgery - - no node involvement!  My surgeon thought I could wait a few months.  He turned out to be right. My breast was chock full of cancer though, that showed up on none of the tests.

    If you are having a mastectomy with expander - and you have no fear and your doctors says it can wait - then I would.  My surgery was 10/21 and I am only now just starting to feel better.  I can't lift anything, won't be Christmas shopping except online.  I have family cooking TG for me since I can't. 

    Everybody has a different recovery experience, but I am one of those who always recovers much faster than anybody thinks.  I was super healthy.  This time though, it's been hard for me.  You won't know until you do it how you'll react.

    Recovering from plain mastectomy is easier, I hear. Lumpectomy easier too.  It's the expander that is difficult (at least for me). so keep in mind the kind of surgery you want.

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  • chele
    chele Member Posts: 1,465
    edited November 2009

    Thanks CoolBreeze, I apprechiate you sharing your info.  That's a little unnerving that you had cancer in your breast that didn't show up on any of the tests!  Yikes!  I've considered the worst case scenario, and if I do have to have a masectomy I'll have them both lopped off with no reconstruction.  I don't need the stupid things anyway and I'm not interested in the additional surgeries!  Hubby doesn't care, he just wants me alive.  I've read your blog, your expanders sound awful!

    I'm very healthy too, almost never sick, in good weight and active, so I'd think I'd heal quickly.  I guess I won't really know until i get there.

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  • FACECRAFTER
    FACECRAFTER Member Posts: 1,092
    edited November 2009

    You may have chemo first then surgery then rads, or surgery first then chemo no rads, etc., etc.  The sequence is one of the things you  discuss with your oncologist.   I had a son's wedding to go to, and was on arimidex for 1 1/2 months before chemo, just to start the process.  (arimidex is a pill usually given after chemo if you are post menopausal)

    the point is- everyone's treatment is different.  Can you wait?  Yes.  But you have to see what you are waiting for, in what sequence.

    By the way, the oncologist is the one who determines your treatment plan, I hope that's the doc you are referring to..the general surgeon removes your breasts or perfroms a lumpectomy, and the plastic surgeon does your reconstruction,  and the radiiology oncologist does your radiation.  You are in for a passel of docs, just make sure the right one is doing your treatment plan...

    Good luck and may you sail through treatment the way I did..I had chemo, surgery, rads, and am going to have recon all with very few, if any, side effects...  JUDY

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  • j414
    j414 Member Posts: 321
    edited November 2009
    I had a lumpectomy on a Tuesday, returned to work on Thursday and went away for the weekend on Friday. I was a little swollen and sore, but I took a couple of tylenol for the first couple of days and I was fine. I also had radiation and other than some redness and swelling, I was fine - didn't miss any time from work, enjoyed my summer, went away almost every weekend etc. and rads didn't begin until 4 weeks after surgery. Someone will probably yell at me for this, but I'm going to say it anyway. You can wait - no one can force you to have surgery, but you have a 1.6 cm, grade 2 tumor and the longer you wait the greater possiblity of lymphatic and node involvement. Your decision should not be based on this holiday, but on all the holidays after this one.
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  • chele
    chele Member Posts: 1,465
    edited November 2009

    Judy, my oncologist appointment is Nov 19th, but my surgeon appointment will be when the tests are all final?  I guess I thought he was directing my care.  Just goes to show I don't know diddley.  I'm glad you just sailed through treatment!  It would be great if I did also!

    j414, that's what I'm afraid of.  If I wait, will I jeopardize my health, but if that's such a big deal why is the diagnostic phase taking so long? 

    And truthfully, it's not just about being sick for the holidays but also about my insurance.  My deductible will transfer to next year since I'm meeting it in the last quarter, but my out of pocket limit (coinsurance) will not.  Since that's $5,000 I'd like to postpone surgery/treatment or at least minimize expense until the first of the year!  But, I'm not willing to risk my life for a paltry $5K either.  Just considering all options.

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2009

    Typically, you see the surgeon first and then the oncologist.  Unless you are HER2+, they won't know if you need chemo until after surgery when they check your nodes.  They way it worked for me, anyway, is that the oncologists don't want to see you until after surgery and they know what they are dealing with -  unless for some reason you need chemo first - if you were triple neg, for example, or they wanted to see how a tumor would respond. 

    Your doctor should have referred to you a breast surgeon by now, I would have thought.

    I suppose different practices handle it differently, but for me it was tests, surgeon, surgery, oncologist.  

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  • mawhinney
    mawhinney Member Posts: 1,377
    edited November 2009

    I wanted surgery as soon as possible as I didn't want to give wayward cancer cells a chance to spread. I wanted to do everything I could as soon as I could to rid myself of cancer.  Most of my doctors have a couple of offices around town and I said I will go wherever I can get your first available appointment. That tactic helped me get treatments sooner.  I also requested copies of all reports and tests & prepared written questions for each appointment.

    I had a unilateral mastectomy with immediate placement of an expander. I stayed overnight in the hospital and went home the next day. I was tired and rested alot but only took 2 pain pills.  2 days after surgery I went out for lunch with friends. The expander was a little uncomfortable but not painful.

    j414 said it best ~ It is not this holiday, but all the future holidays you want to spend with loved ones!

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  • j414
    j414 Member Posts: 321
    edited November 2009

    Chele, it shouldn't be taking this long and the surgeon dragging his feet is not suggestive that this is less serious than it actually is. You are one of many patients and I'm afraid you're getting lost in the shuffle. If I were in your shoes I would start leaning on him. Hard. Insist on an immediate appointment and ask him if a six week delay will have a material impact - e.g. whether it will increase the possiblity of lymphatic/node involvement, affect your prognosis etc. If he answers in the affirmative, then the heck with the 5k - just do it.

    I had my 6 months follow up with the oncologist today and we took tumormarkers (which measure enzymes to determine whether there is any cancer brewing). I had a very small, grade 1 tumor with no lymphatic or node involvement and with 5 years of tamoxifen I still have a 9% chance of a distant metastasis. Like mawhinney said, it's the wayward cancer cells that we need to worry about.

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  • chele
    chele Member Posts: 1,465
    edited November 2009

    I'm sorry CoolBreeze, the doctor I'm referring to is the surgeon, I should have made that clearer.  When my GP found out I had a lump he pretty much hit the panic button and got the ball rolling.

    The surgeon is waiting for the MRI results and my HER2/neu results, which he should have had today, but I didn't get a call.  I'll be calling tomarrow afternoon if I don't hear from the surgeon's nurse by then.  I live out in the sticks, there seems to be quite a bit of delay between having the tests done and getting the results.  It used to drive me crazy, but I'm somewhat complacent now.

    mawhinney, I've also requested copies of all test results so I can be prepared to ask questions and make the best choices.  Well, if I ever get the chance that is!  I'm absolutely terrified of the stray cancer cells.  Having pain in my lymph nodes under my arm is only helping to terrify me!  But I'm trying not to panic and also trying to gather enough information to consider so I'll be prepared to talk to the doc.  I think you and j414 are absolutely right that I need to worry most about all the rest of my holidays to come, not just the immediate ones!  Don't worry, I won't do anything stupid just to save a buck!

    j414, I'll be leanin'!  I really expect to hear something tomarrow.  The surgeon's nurse has been very good about calling.  Do the HER2/neu results usually take longer than the PR and ER tests?  And I suppose that even though he may have gotten the MRI results today, they may have come in late.  He scheduled an appointment with the oncologist for Nov 19th so I suppose he expects something to be moving along?!

    *sigh* I'm so not good at waiting in the dark.

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  • FACECRAFTER
    FACECRAFTER Member Posts: 1,092
    edited November 2009

    As I said, everyone is different.  In my case the surgeon would not do anything until he had the plan from the oncologist...and again in my case, it was chemo, then surgery, then rads.  So you'll just need to wait until the results come in.  don't panic..the tumor is not going to grow that fast.

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  • chele
    chele Member Posts: 1,465
    edited November 2009
    Thanks FACECRAFTER!  That's kind of what I was thinking, that it wouldn't grow THAT fast.  I'll just have to wait and see, my favorite!
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  • chele
    chele Member Posts: 1,465
    edited November 2009

    Some good news!  My HER2/neu is negative!  And I've got an appointment with my surgeon tomarrow to go over the MRI results and discuss the game plan!  Yes!!  FINALLY!

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  • CoolBreeze
    CoolBreeze Member Posts: 4,668
    edited November 2009

    That's great news Chele.  I'm glad things are moving along for you.  Sometimes it seems glacier like - if you look back at my past posts you'll see I was in the same position.  It all worked out for me and it will for you too.  :)

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  • chele
    chele Member Posts: 1,465
    edited November 2009

    Thanks CoolBreeze!

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  • chele
    chele Member Posts: 1,465
    edited November 2009

    Well, the look on my surgeon's face was priceless!  He said he hadn't even been asked if it was OK to wait before!  He was going to consult with another doc, but then took the plunge and in the nicest way possible advised against waiting.  The MRI found two more small suspicious spots and a hepatic hemangioma!   My surgery will be next wednesday.  I've chosen to do a bi-lateral masectomy.  If my lymph nodes are clean I won't even have to do chemo!  I'm really excited to be on my way to getting done with this!

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  • j414
    j414 Member Posts: 321
    edited November 2009

    Chele, great news re: her2!  And I'm so happy you're not going to wait until after the holidays - it's definitely not worth the risk. I will be sending prayers your way on Wednesday and check in with us when you can.

    Best,
    J

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