is pain normal?

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kks_rd
kks_rd Member Posts: 363
edited June 2014 in Stage I Breast Cancer

Hi there, and please forgive me if I'm not posting this in the right place... there appears to be no forum for "silly little questions." ;)

Since my dx, it feels like the lump has gotten appreciably larger (in fact, it is larger than we originally thought)... and now I am starting to get random pangs.  Not exactly painful but it almost feels like when your foot falls asleep and then starts to wake up again (pins and needles almost?)... it's really freaking me out!  It's not exactly where the tumor is, just in the general surrounding area.  When I let my imagination run away with me, I envision a rapdily growing tumor that is just eating away at everything inside. sorry to be graphic, but it's terribly frightening.  Then at times I feel like it must all be in my head, or at least that my anxiety is making it seem worse than it really is.

I have seen the BS twice and am now waiting for an appointment with the medical onc to discuss chemo prior to surgery, in an attempt to help shrink the tumor first.

Can anyone share from their experience with this?  I know cancer is indeed NOT painless, despite the myth.  But is what I'm experiencing more or less par for the course?  And what does it mean - that it's spreading?  Yesterday, I heard that my onc appt was scheduled for 6/14 - almost a month from now!  I am pushing for something more immediate, perhaps at a competing cancer center, but I know that desire is driven in part by my fear of what is happening to me....

Any input you can provide would be helpful. Thanks all, hugs to you!

Comments

  • thenewme
    thenewme Member Posts: 1,611
    edited May 2011

    Hi Kat,

    I didn't have pain with my tumor, but I definitely felt mine growing bigger!  The doctors said it was most likely either swelling from the biopsy or just my increased awareness of it, but I really felt it was getting noticeably bigger.  They kept trying to reassure me that BC tumors typically double in size every six months or so, and therefore mine had probably been there for a long time already and surely wasn't noticeably bigger in mere months.   Unfortunately I had a bad sinus infection after my diagnosis, so my surgery was delayed.  By the time of my mastectomy 6 weeks later, it ended up being 5 cm, and all the docs were quite surprised.  

    Of course I realize the anxiety and fear and biopsy-related swelling, and the constant touching/pressing, etc - can make you think the worst.  On the other hand, there's a possibility that yours, like mine, could really be growing right before your eyes.  With all my heart I hope that's not the case for you, but please don't dismiss the possibility.

    After my pathology came back later, and after doing a ton of research here and elsewhere, I now know WHY it really was growing fast and not my imagination.  First of all, my tumor was triple negative, which is very often a really fast grower - in fact, it's called an "interval" cancer since it often comes up out of seemingly nowhere.  I was young (39) at diagnosis, so that was another common factor for aggressive disease.  My Ki-67 was at 100%; the ki-67  is basically the number of cells actively dividing at any specific time.  Again, for triple negative disease, Ki-67 is often very high. My tumor cells were  high grade, poorly differentiated, with large degree of central necrosis and lymphatic invasion.  My tumor size of 5 cm put me right at the border of an even higher stage and increased my prognostic risk.  My total Nottingham score was 9.  UGH. 

    I share this not to scare you or anyone.  I share this because I see a lot of similar characteristics between your cancer and mine, and I want to encourage you of two things.  First, PLEASE take this very seriously- see if you can get another appointment sooner if they have a cancellation or a different doctor or another center.  Second, in case your tumor does turn out to be TNBC and/or aggressive, just know that chemotherapy treatment is especially effective for these tumors (since it has the most effect on fast-growing cells!) and there are a lot of TNBC success stories!  IMHO, you can't afford to wait and monitor and "try out" unproven and/or disproven treatments.  Your best chance is NOW.  TNBC is especially sneaky and unpredictable, and we don't have some of the recurrence-preventive options that are available to other types.  

    Anyway, please let me know, either here or via PM if there's anything at all I can help with.  It's so critical that you get accurate information to help guide your choices.  I wish you nothing but the absolute best whatever you choose.  Hang in there and let us know how you're doing.

  • peggy_j
    peggy_j Member Posts: 1,700
    edited May 2011

    Can you call your doc and discuss the new symptoms with a nurse? Glad you're trying to see an onc earlier--I've been able to see mine within a week.

  • Beeb75
    Beeb75 Member Posts: 325
    edited May 2011

    Hi Kat,

    Not sure if you have a surgery scheduled....if you do, then there's less of a rush to see the onc, since you wouldn't be able to start chemo until a few weeks after surgery. But if you are considering doing chemo before surgery (it's called neoadjuvant chemo) than you should see an onc ASAP and get that started.

    If you're considering that, I agree with the others above that you should push for an earlier appt. Call the various docs office and explain that you are 32, receptor negative, and would like to see an onc as soon as possible, to discuss your options. Be the squeaky wheel, it could save your life. 

    Good luck!

  • Beeb75
    Beeb75 Member Posts: 325
    edited May 2011

    And Kat, to your question about pain. It could be that you are feeling 'healing' from the biopsy. But it could also be that your tumor is actually growing. In some people (and especially for tumors with negative receptors) it can really grow fast, like thenewme says. That said, I thought my tumor was growing for sure in the weeks between my dx and surgery, but it was not. In young women, or those with dense breast tissue, the tumor can feel bigger because of the dense tissue on top of it. Imagine a golf ball under a stiff carpet, it will feel bigger than it is. Mine measured nearly 5cm from the outside...but when it was removed it was only 2 cm...close to what MRI had seen.

  • Kay_G
    Kay_G Member Posts: 3,345
    edited May 2011

    I would definitely try to see an onc earlier.  I haven't had surgery yet, but when I saw the BS (one week after biopsy results), she tried to get me into see the onc that same day.  She was too busy, but made an appointment for me the very next day.  I would see if either your PCP or your BS could make a call to the onc and get you an earlier appointment.  By the way, my BS measured my tumor to be 7.5 cm, at the ultrasound a week earlier, it was 4 cm.  The BS also ordered a MRI which I got in about a week and that measured it at 3.5, so I think the difference was swelling from the biopsy.  It was particularly painful.  I don't think I've heard other people have as much pain with it as I did.  I also had three biopsies, the breast and two lymph nodes, which were all cancer.  Chemo has worked really well.  There is scar tissue from around the tumor, but they can't even measure the tumor now.  I'll see at surgery what the real story is. 

    Good luck to you.  A call from another doctor is typically very effective.  It is worth a try IMO.

  • kks_rd
    kks_rd Member Posts: 363
    edited May 2011

    Hi everyone, thanks so much for your thoughts.  I have an update.  After spending the morning as a "squeaky wheel" I now have two onc appointments, one is next week and the other is the following week.  I am convinced more than ever that the chemo prior to surgery option is one I should definitely pursue most seriously.  PS I am about 3 weeks post-biopsy, not sure how this makes a difference but there is no longer any swelling that I can discern.

  • katgroves
    katgroves Member Posts: 23
    edited May 2011

    I am having the same problem. Since my needle biospy I am having more pain in my breast, and it seems to radiate to my shoulder and down my arm.

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