Explaining to good friends (and my Drs) my state of mind?

Options
jenn32214
jenn32214 Member Posts: 89
edited May 2016 in Mental Health: Because Cancer Doesn't Just Affect Your Breasts

Ok, two months after my diagnostic mammo that showed the microcalcs I am still no closer to having surgery.

At first the BS thought it was just the one small area in the left breast and he could do a "lumpectomy" with radiation.

(The one in the right breast turned out to be benign)

he also wanted me to have a breast MRI, "Just as belt and suspenders", and was sure it would come back fine. Except the 2nd area of microcalc in the left breast they didn't biopsy before, apparently because it had also shown up on previous year's mamamo and so was thought to be "stable", is now showing up on the breast MRI as "an abnormal mass ...which demonstrates rapid enhance and a type II curve."

This mass is 7 X 8mm and apparently does correspond to the other microcalc on the left breast that was seen on the mammos.

So now it has to be biopsied too, next week. The Amazing Carnac predicts it will be cancer too, and even my optimistic BS who before kept telling me how early, early we caught it, is now saying if this one comes back cancer we will have to do a mastectomy.

And as far as I can see, we are in no way out of the woods on knowing how my axillary lymph nodes will be. BS said they look good on the breast MRI, but from what I've read like on this forum, we won't know for sure until after surgery and they are biopsied.

So how do I explain to people that this aspect of cancer: the awful still pretty huge unknowns, how my test results seem to keep coming back worse than the professionals think they will, is what's driving me the most crazy right now.

I'm starting to think even a good friend who had BC, who's case was more straight forward than mine and seems to be out of the woods, and another good friend whose husband had pretty significant colon cancer which luckily he survived and is past the 5 year mark, don't know what to do with me over this aspect of my case.

And most of the professionals I've talked to so far here, not just BS, have been telling me how early, small, simple, etc my BC is. Except its not, as every test I've had here seems to show once we get the results back. And this "hopeful optimism" on their part just makes things worse for me and feels like a double whammy when the test results don't come back the way they hoped/thought they would. I know they mean well, but is there a way for me to tell them something along the lines of, "The way I think, its better for me in general not to hear the "hopeful prognosis" and just stick to the facts here as much as we know them

As an example, the BS surgeon saying last time I talked to him that if this next biopsy comes back cancer we'll have to do a mastectomy, is better than the "hopeful progonsis" thing I've been getting from him/them.

Thanks

Jen

· Share on FacebookShare on Twitter

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited April 2016

    Jen, we're so sorry you're going through this. You're right, unfortunately there're always still a lot of unknowns until the surgery can happen and a full pathology report can be done on the cancer(s).

    Sure, it's tough to explain these things to your friends/family, but the truth is, you don't have to tell anything to anyone right now, if you don't want to -- you don't owe them that. And if you do feel compelled, just explain honestly that you just don't have the full picture yet, so there's no real answers. Your friends that have dealt with cancer are sure to understand that!

    Hang in there -- you'll know more once you have your new biopsy and get a surgery plan in place. And then you'll know more after that for additional treatment. We understand the frustration with hanging questions -- but as you answer those questions one at a time, along with your doctor, you'll feel better and more empowered in your treatment decisions - and how to explain them!

    We hope this helps!

    --The Mods

    · Share on FacebookShare on Twitter
  • jenn32214
    jenn32214 Member Posts: 89
    edited April 2016

    Thanks for the thoughtful reply. I take what you say "but as you answer those questions one at a time, along with your doctor, you'll feel better and more empowered in your treatment decisions - and how to explain them!" on faith.

    because this aspect so far, the "hurry up and wait game", the having test results keep coming back worse than thought is in some ways worse for me than having cancer itself. Did I mention I'm an engineer who likes to fix things, or at least be able to DO something?

    Thanks again

    Jen

    · Share on FacebookShare on Twitter
  • pennsygal
    pennsygal Member Posts: 346
    edited May 2016

    Hi Jen -

    I remember feeling just as you are feeling now. It seemed that every test took a slightly different turn than was expected, I went from scheduling lumpectomy to scheduling bilateral MRI guided biopsies, and then on to neoadjuvant chemo when the MRI showed positive lymph nodes. I think I was on autopilot, just going from appointment to appointment and taking in as much information as I could on any given day. I have found that docs are conservative - they see it as containable until it proves otherwise (if that makes sense) which seems counter-intuitive in a crisis situation!!

    It was helpful for me to have one person - my husband in my case - speak to other friends and family members, so that I didn't have to explain everything over and over. I also have realized - about a year later - that I didn't have to give the whole story to everyone. That helps me feel less overwhelmed.

    I hope this helps. I can tell you that once the plan is in place, you will feel better, because the unknowns will be addressed.


    Barb


    · Share on FacebookShare on Twitter
  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016

    Hullo, Jen - I don't like getting optimistic projections, only to have those hopes dashed, either. I've told all my team that I want them to err on the side of caution rather than trying to cushion things for me.

    You must be just about at your wits end, and having to keep people updated doesn't help any. The suggestion of designating 1 (other) person to do is a good one. It may be too later for you, but I found it helpful to really limit the number of people I informed as long as possible.

    I do hope you'll get your biopsy results quickly so that you'll at least know what your surgical options are. Hang in there - the waiting and changing status are truly dreadful but you're welcome to come here and vent away!

    · Share on FacebookShare on Twitter
  • jenn32214
    jenn32214 Member Posts: 89
    edited May 2016

    "You must be just about at your wits end"

    Yup, that's for sure. Yesterday and today I have been feeling sick to my stomach, which isn't usually a problem for me, and I haven't had any treatments yet!

    I did schedule a consult with another cancer center in my area, just to have a 2nd opinion. And having done so makes me feel a bit better. Unfortunately I am single and don't have many IRL people for support, So I do want to be able to tell my few close friends some of what I'm going thru.

    I am sorry any of us is going thru this, but it's a big help to hear others who've gone thru the "optimistic" Drs routine. I think because if anything I expect Drs to do more than what might be necessary, this dynamic was having me think my case must be really bad and unusual if the Drs keep ending up being wrong.

    .Plus, one of my good friends had BC herself, but I think her case was a lot more clear cut and straight forward, so it seems like even she is struggling to understand what I am going thru here.

    In the future I plan on telling the Drs just like Hopeful says. And I may have to say a variation of this to my good friends as well.

    And yes, I think the ever changing status is the most dreadful part of all. I get, as least I think I do, that with cancer you can never know 100% for sure. But this seems beyond the pale, when its been two months since my followup diagnostic mammo and even after all these tests we are still no closer to knowing what's really going on.

    I do think if this next biopsy comes back with cancer, I will sit down with my BC and say let's hit the rest button and go from there.

    Thanks again for your support and letting me vent

    · Share on FacebookShare on Twitter
  • jenn32214
    jenn32214 Member Posts: 89
    edited May 2016

    @pennsygal can you tell me more about "scheduling bilateral MRI guided biopsies"? Did you have a breast MRI first and then another one for the biopsies, or did some other test show those areas of concern that were then biopsied with that MRI?

    · Share on FacebookShare on Twitter
  • jenn32214
    jenn32214 Member Posts: 89
    edited May 2016

    Good news! This last biopsy came back benign. So will be talking to BS tomorrow about next steps.

    Thanks again for all the support.

    · Share on FacebookShare on Twitter
  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016
    I hope the two of you can work out a plan that truly stays on top of your concerns going forward, Jenn.
    · Share on FacebookShare on Twitter
  • jenn32214
    jenn32214 Member Posts: 89
    edited May 2016

    Me too. Given that this biopsy came back benign I will probably go ahead with the lumpectomy for now, and do what I need to do for this breast cancer for now. But then I want to decide what to do longer term. This last biopsy was from something that only a breast MRI picked up. So does this mean I should have annual breast MRI's (I also have dense breasts) going forward (assuming insurance will pay for it). ?

    Thanks again


    · Share on FacebookShare on Twitter
  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016

    Jenn, I think you'd have good reason to have MRIs as well as mammograms going forward. I would certainly have a thorough discussion with the BS about that issue.( If all of your mammos have been 2D it's possible, I suppose that "3D" (tomosynthesis) might do a better job and might have seen that area of concern and could thus be an alternative to an MRI but wouldn't count on it.)

    If your insurance doesn't approve it, ask your BS to advocate for you.

    (Edited to add that many women alternate mammograms and MRIs every six months. My BS likes to do both more or less at the same time so that she can do a side-by-side comparison of the imaging. She also finds it's less stressful for patients than every six months.)

    · Share on FacebookShare on Twitter
  • jenn32214
    jenn32214 Member Posts: 89
    edited May 2016

    As it happens, I talked with the radiologist a bit before she actually did this last biopsy. I told her I'm an engineer so we actually spent a bit of time talking about the different imagining technologies (mammo, breast, ultrasound) and the pros and cons of each.

    What I remember her saying is they are complementary, and I am a good example of that. The mammos showed the micro calcs, and the MRI showed the small mass.

    " If all of your mammos have been 2D it's possible, I suppose that "3D" (tomosynthesis) might do a better job and might have seen that area of concern and could thus be an alternative to an MRI but wouldn't count on it.)"

    Actually that's another good question. My previous 2D mammo a couple years ago didn't see anything and just noted I have dense breasts. But these new mammos were 3D and picked up the 3 micocalcs, one of which turned out to be IDC. But again only the breast MRI picked up the small mass.

    · Share on FacebookShare on Twitter
  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited May 2016
    In that case, Jenn, I'd say you SHOULD have MRIs as well. It's cool that you got to talk to the radiologist - and it sounds like a useful convo, too.
    · Share on FacebookShare on Twitter

Categories