Fill Out Your Profile to share more about you. Learn more...

HELP. I am so scared.

Just had 6 yr post diagnosis mammo and wound up having a biopsy that same day due to pleomorphic calcifications found near original site. Rad strongly suspects DCIS again. I am not doing well mentally. I am terrified of having a recurrence. It means that the original treatment didn't work. So how can I stop it now? Had lumpectomy and rads first time around. Now I guess it will be a mastectomy which scares me in and of itself. But I can't stop thinking about how the treatment has failed and I am doomed to have it progress to incurable. I am taking Ativan but it isn't doing the trick. I am shaking and can't stop. My blood pressure is way up which is a big concern as I was also recently diagnosed with an aneurysm and I am supposed to keep my blood pressure under control. I don't know how to calm myself down and how to make peace with this. I think a recurrence is worse than a new cancer maybe. I can't sleep. I am shivering and shaking. How am I going to survive this? Help me please.

«13

Comments

  • alicebastable
    alicebastable Member Posts: 1,933

    Hi again! It's kind of confusing if you start several threads on the same topic. I'm sorry you've got the midnight heebie-jeebies; that seems to be when we all wrestle with our worst fears. Can you distract yourself with a favorite light book, or watch some funny videos for a while until you can get to sleep?

  • mountainmia
    mountainmia Member Posts: 857

    I hope you were able to settle some and get some sleep. It sounds like you're really scared. If the Ativan isn't helping, please check with your doctor for other help, perhaps a different medication or maybe there are counseling resources for you to tap.

    In the meantime, remember that no one ever died from DCIS. DCIS is considered pre-cancer, Stage 0. And you don't need to be brave. You just need to show up.

    Once you have a solid diagnosis and a treatment plan, it's easier to do just that. In the meantime, as Alice has suggested, find some ways to distract yourself and soothe yourself. Good luck.

  • kkubsky
    kkubsky Member Posts: 47

    This isn't my first dealings with DCIS. Apparently the original treatment did not work and I am having a recurrence. So those cells that were missed have had all this time to grow.... There is a 50/50 chance of it being DCIS or invasive. Last time I got lucky and it was pure DCIS. But it was an ugly DCIS....grade 3, comedo necrosis, extending into the lobes. At the time of my surgery the margins only needed to not have ink on tumor. Shortly after my surgery those guidelines were changed to a 2 mm margin for DCIS. I know that 2 of my margins were at 1 mm. I guess that is all water under the bridge now but I play the "what if" game all day. Maybe I should have had a mastectomy back then. I am at a point that I just want to never have to deal with this again. I keep having flashbacks to the first time. All the drs appts, the terror, the decisions..... and now I have to do it all again. I know many people personally that have had breast cancer and have gotten on with their lives. I don't know anyone that has had a recurrence (other than on this board). I am reading too much Dr Google. I am looking at all the recurrence threads and focus on the ones that go from DCIS to stage IV and I just lose it. I am my own worst enemy. I have such awful thoughts and I cannot seem to stop them. I have a therapy appt on Monday and I am hoping my dr can prescribe something stronger for me. My original surgeon is no longer in the area and now I will have to deal with finding a new one. Sorry for going on and being so negative. I have to get it out somewhere.

  • minustwo
    minustwo Member Posts: 12,990

    KKkubsky - sorry about your anxiety but Alice has a good point. I just answered one of your other threads. If you posting your thoughts & questions in one thread people can follow along & be of more help.

  • kkubsky
    kkubsky Member Posts: 47

    I wasn't sure where to put my posts.... since i don't know for sure yet if it is only DCIS. And if it is DCIS do I put it in recurrence thread or DCIS thread....

  • Ah, grade 3 and narrow margins last time. IF this is a recurrence, that explains it. I say IF because at this point you are having a biopsy and have not yet been diagnosed. Given your history, the odds are that this probably will be DCIS again, but maybe it's not. Maybe it's calcs that developed from the surgery. Maybe it's ADH. Yup, more likely it's DCIS, but it's way too early to be thinking invasive cancer and mets and how will you survive.

    Back to the grade 3 and narrow margins last time - that's really good news for you now. Why? Because it means that there is a very logical reason for the recurrence. With grade 3 and 1mm margins, your risk of recurrence was pretty high. I appreciate that you thought that you were done and you are shocked to be going through this, but for every one of us, there is always a chance of recurrence; for you, with grade 3 DCIS and narrow margins, your risk was not insignificant.

    Looking forward, you are right that since you had rads last time, this time you will need to have a MX. But here's the good news. If you have the MX and if clear margins are achieved, this time your risk of recurrence will be low, only 1% to 2%. You naturally are worried that if your treatment didn't work last time, why will it work this time? Because this time the treatment will be different. 1mm margins with grade 3 DCIS - as you've discovered, that is no longer considered adequate. A MX with good margins? That is much better.

    I know that you are frightened about having the MX. When I was first diagnosed, I wasn't shocked by the diagnosis but I was shocked by the fact that there was so much DCIS that I needed to have a MX. With all the breast issues I'd had over the years, I was prepared for a breast cancer diagnosis, but a MX? No way. But it was necessary and it turned out to be a much easier surgery than I expected, and I turned out to be fine with it. In fact, when I was diagnosed again 13 years later (a new primary in my other breast), although that cancer was very small and a lumpectomy would have sufficed, I immediately opted for another MX. Now I'm even, with implant reconstruction on both sides. And it's just fine.

    I know that you are frightened that the diagnosis this time might be IDC. Yes, that's possible. But you'd said that your imaging shows calcifications with no lump or mass. That is most likely to represent DCIS. And if it happens that some of those DCIS cells have progressed and broken through the duct and become invasive cancer, the likelihood is that it's just a few cells, not enough to form into even a tiny mass (my 8mm IDC with my 2nd diagnosis was a visible mass). If there is some invasive cancer present, does that change your staging and prognosis? Yes but it's likely that the impact will be small. My original diagnosis included a IDC microinvasion which made me Stage I instead of Stage 0, but it had zero impact on my treatment; as for prognosis, my risk of mets went from 0% (if it had been pure DCIS) to all of 1%. With a slightly larger invasive cancer (IF that should be the case) the risk will be higher, but again, with no mass visible, it likely than any invasive cancer will be very small and the risk will still be low.

    You are scared, which is understandable. But you are jumping many steps ahead. As you mentioned in another post, you've been reading posts in the Stage IV forum from women who started with DCIS. Not a smart thing to do, and you know it. And here's the thing. Many of those Stage IV posts are wrong. A lot of patients have a combination of IDC and DCIS, and they just list their diagnosis as being DCIS. But with a little digging, you realize that the initial diagnosis wasn't actually Stage 0 DCIS. I've been here a long time now, and I've seen that probably 100 times. But patients who start with pure DCIS and end up Stage IV after an invasive recurrence? Best I can recall, I've seen only 3 or 4 over these 16 years.

    Take a deep breath. Step back and look at the situation. You had DCIS before. You may have DCIS again. DCIS is treatable and 100% survivable. There might be some invasive cancer present. If so, it's highly likely to be very small and it's not likely to confer a high risk. Deal with what you know, don't speculate on worst case scenarios. Based on what you know at this time, and based on the odds of what might happen, this will all turn out to be fine. Go with that.



  • kkubsky
    kkubsky Member Posts: 47

    Beesie As in the first time I had DCIS, your words are so immensely helpful. I think I am going to make a copy of this and put it on my refrigerator so I can see it all day!

    I am going to guess that this will be at least DCIS from what the report said-----The breast parenchyma is heterogeneously dense, which may obscure small masses. Confirmed in the upper outer quadrant adjacent to the previous lumpectomy scar is a cluster of new highly suspicious, pleomorphic calcifications spanning 1.5 cm. A few additional scattered clusters of calcifications lateral to the lumpectomy site are long-term stable. The other previously questioned grouping of calcifications or posterior to the lumpectomy site is not confirmed on the additional images.

    Still having a hard time thinking of the possibility of invasive ca. The rad did say there was no evidence of any mass in the mammo or US. If this turned out to be just some benign condition it would feel like I hit the mega million lottery.

    **trying to remember the stats-----50/50 pure DCIS vs invasive in a DCIS recurrence. 20% chance of re excision if having a lumpectomy or was that the percentage of finding invasive component in the DCIS? In any case, mastectomy will be the treatment no matter which way it goes.

  • kkubsky
    kkubsky Member Posts: 47

    Question- Do most get a second opinion? I don't know if there is much to think about if this turns out to be DCIS. There doesn't seem to be a choice....mastectomy it is. So what would I be getting a second opinion about?

    Now if there is an invasive component, then I suppose there could be discussion on how to proceed. My thought was to go get another opinion at Dana Farber in Boston. Not sure how to do that though.

  • minustwo
    minustwo Member Posts: 12,990

    If you like & trust your surgeon, and agree with his treatment a plan - I'd go ahead. If any of those things are in question, I'd get a 2nd opinion.

  • I agree with MinusTwo. Get a second opinion if you feel uncomfortable but don't assume that you will need one. Lots of people get second opinions but most don't.

    IF you have invasive cancer, that's new to you, but it's not new to your doctors. While some invasive cancer diagnoses are complicated, many (probably most) are not complicated at all. There are well established treatment guidelines which you can easily access to review and to match up against the recommendations you receive, or review before you see your surgeon and MO to be prepared for what they likely will recommend. Sometimes there are choices within those guidelines or a diagnosis might be borderline between one recommendation and another; those situations might warrant a second opinion. Sometimes there may be reasons why treatment should vary from the guidelines for a specific individual; for example there may be a comorbidity that raises concern about a particular treatment, and if your doctors aren't receptive to moving away from the guidelines, that might warrant a second opinion.

    Don't assume you'll need a second opinion if you are diagnosed with invasive cancer. The treatment recommendation might be quite simple and straightforward. Once you have a pathology, then the treatment options get laid out. Until then, everything is just speculation and needless worry.


  • kkubsky
    kkubsky Member Posts: 47

    I just wonder if it would make sense to go to a larger facility due to the fact that I have a newly diagnosed aortic aneurysm. Just want to be sure that if something negative were to happen, the facility could handle that issue as well. I really like what I am seeing about Dana Farber but there may be insurance issues since we would be out of state. I guess I can call tomorrow for some information. Another option would be Sloane Kettering but I am not so thrilled about going into NYC. And there is always Yale that isn't too far. Or just stay local. I just want to get the best possible outcome with the least amount of treatment and feel confident. I am not that thrilled with the NP at my local center although many people seem to like her. Haven't met with a surgeon there yet. So much still up in the air.

    And after adding one additional dose of Ativan yesterday, I was able to sleep. Blood pressure is still too high for what it should be....


  • minustwo
    minustwo Member Posts: 12,990

    Kkubesky - I don't think you're processing what we're saying. Dial it back. Quit researching a future that may never happen. If you need to stay off the computer or phone to do that, then put them down for now. If you're into sports- watch the SuperBowl. If you have snow, go make snow angels. If you're by any water - lake, ocean, river - go watch it move and let your mind flow into other paths - good memories, happy dreams for the future. I rarely recommend leaving reality, but you don't have a diagnosis yet and everything you're thinking about is specious. Quit thinking about & planning for eventualities you may never need.

    Please read this again from one of Beesie's earlier posts.

    Deal with what you know, don't speculate on worst case scenarios

  • kkubsky
    kkubsky Member Posts: 47

    I know what I should be doing. But I am an overthinker and it is very difficult to shut off my mind. I know it is probably fruitless but I feel better if I have some sort of contingency plan in place. I also know that it causes excess stress. And even knowing that I am basically spinning in circles, I have a hard time stopping. It's like I feel the need to be prepared....don't want to be caught off guard. I feel that if I have some sort of prior information or outline of the possibilities, I won't feel quite as gob smacked if something bad does happen. Although, honestly, I will still feel gob smacked. I am my own worst enemy.

  • kkubsky
    kkubsky Member Posts: 47

    Well I should be hearing results today. I am a bundle of nerves. My stomach is in a knot and I can't eat. I dread the phone call. Been taking Ativan the past 2 days and my blood pressure is still up. BUT I have slept so that is something. Don't really want to keep taking it on a regular basis but maybe that is just what I have to do for now. I HAVE to figure out how to keep my pressure down....I have an aneurysm to think about as well as the breast dx.

    I have been trying to understand how having a mastectomy (which I am assuming I will be having) is going to get rid of this once and for all. I know nothing is 100%. The lumpectomy/rads failed. So now the whole breast will be removed leaving very little area for a cancer to grow? But of course you can't get all the tissue out. I am scared of the surgery. And more so of any other treatment if there is more to these calcifications than DCIS. I know I shouldn't keep thinking about all the possibilities but my mind just keeps churning.


  • alicebastable
    alicebastable Member Posts: 1,933

    No matter what happens, you will never get back these days you spent on what-if instead of living in the present. Don't let the idea of cancer rob you of days when the real thing does enough of that.

  • serendipity09
    serendipity09 Member Posts: 769

    Kkubsky - I hope you've received the call and that everything is ok. If it does not come back in your favor, you have plenty of members here to support you. Please be gentle with yourself! {Hugs}

  • kkubsky
    kkubsky Member Posts: 47

    Well, the biopsy results are in. DCIS again. The pathology is identical to the first time. So now to have surgeon consult. Have decided to go to either Memorial Sloane Kettering or Dana Farber. Could go local again but I think I prefer a dedicated cancer facility the second time around. Plus even though at this point it appears to be "only" DCIS, there are no guarantees till after surgery. My DCIS is high grade, er/pr negative with necrosis so it isn't one to just watch and wait. Feeling a bit better that so far there is no invasive component. Scared of mastectomy surgery and what that entails.

    Anyone familiar with either Dana Farber or Sloane Kettering? I could go to either. One interesting thing I saw was that Dana Farber has a program just for DCIS.

  • alicebastable
    alicebastable Member Posts: 1,933

    Well, at least you know what you're facing with the same diagnosis, but I'm sorry you have to go through it again. I hope it's contained and as easy as possible.

  • Sorry that it's DCIS again, but glad that it's just DCIS. Hopefully that remains the diagnosis after surgery and you have nice wide surgical margins, in which case you'll be all done after the mastectomy.





  • kkubsky
    kkubsky Member Posts: 47

    What happens if the margins aren't wide? What happens then?

  • alicebastable
    alicebastable Member Posts: 1,933

    What happens if they are?

  • kkubsky
    kkubsky Member Posts: 47

    Touche! I need to think like you do. On the plus side, my boobs are large so there should be plenty of room.

    Now to get the ball rolling and get this done. The logistics of it all are overwhelming. Also the fear of what a mastectomy entails is scary.

  • jo-jo2018
    jo-jo2018 Member Posts: 139

    Kkubsky, just wanted to say how sorry I am that you have a recurrence.

  • kkubsky
    kkubsky Member Posts: 47

    If after mastectomy there is an invasive component, how does that change treatment and prognosis? I worry because I have high grade, hormone negative DCIS confirmed after biopsy. Interestingly, the pathology is exactly the same as my original DCIS. I am trying to be positive but having a hard time putting the possibility of invasion out of my head. How do people do that? Right now I am nervous about the surgery itself and the recovery. Not planning on reconstruction so a bit nervous how that will look too. And the neverending thoughts about micro invasion or more.

  • marinochka
    marinochka Member Posts: 82

    I had DCIS and was treated at MSK in NY. I am happy with everything how it was handled there in 2019. I would recommend them.

    Now I have checkups there.

    I hope you don't have invasive, but right now take care of yourself and don't think ahead please! Hugs!

  • minustwo
    minustwo Member Posts: 12,990

    Kkub - another member saying the same thing - 'DON'T THINK AHEAD'. You really do have to do some fun things to get your mind to STOP.

  • kksmom3
    kksmom3 Member Posts: 101

    Khubsky, I had the same kind of DCIS as you. I thought that was all I had, but pathology revealed an invasive component, luckily it was only 3 mm in size. That was hard but my treatment plan didn't change at all. I'm 3.5 years out and so far, so good. So sorry you have to go thru this again!

    I realize this is a recurrence, but once you have a mastectomy, you are very likely home free. I know this sucks though! I would have to think if it's invasive at all, it would hopefully be small. When do you go for a consult?

  • kkubsky
    kkubsky Member Posts: 47

    Waiting to hear from 3 different institutions regarding surgical consult. Two have gotten my prior reports today. Waiting for phone calls back.

    Spoke to the local nurse navigator today. She suggested local surgeon but I don't think I want to go that route this time. She also got me more riled up about invasive possibility...... I was doing better after talking to radiologist yesterday but now my brain is churning again....

  • alicebastable
    alicebastable Member Posts: 1,933

    Kkubsky, have you noticed that most of the women who have responded to you have or had invasive cancers?

  • kkubsky
    kkubsky Member Posts: 47

    Yes I see that. I guess I am a weenie.... It's hard for me to be positive. I was diagnosed with an aneurysm in September, which threw me for a loop. And now this. Just a bit overwhelming.