Watched 2 years and now possible dcis plus invasive?
I had a bout of 1/8" dcis five years ago that was mid grade. Had lumpectomy good margins, but no rads as surgeon said it was too small and if it came back they could not radiate again. Ok, so fast forward 3 years, got another bout of tiny 1/8" dcis same area. Pathology was still dcis but higher grade. Surgeon wanted me on Tamox (which blew my uterus up in a month). I was afraid to take the Letrazole…. surgeon said let's do mammograms every 6 mos to watch it. Which of course I did.
I did speak to several oncologists as well, all said I should have had the second bout of dcis removed. My surgeon disagreed. He felt dcis was overtreated and it's ridiculous to operate on every little piece of dcis. He did say if it got bigger he would of course excise it.
Things were stable on mammo 6 mos ago, which was great. But my recent mammo, not so great. The area of dcis was double in size! Now, 1/2" in span on mammo. They are biopsing this week to see if there is an "invasive element' because it got bigger in 6 mos. So, when I heard the word invasive…. of course I'm upset. Mad that a year ago, or 6 mos ago, I could have had it removed. I don't know how that affects me going forward? Obviously lumpectomy possibly rads, but I'd rather not do a masectomy.
Wanted to know from women on dcis board if they had higher grade dcis and was it always invasive on final pathology? Was the invasive still contained in the duct? And how did they handle going forward? I was under the impression, that DCIS takes more than 3 years to go invasive or longer? Any similar stories, let me know.
Also, if biopsy showed invasive with dcis how long did you have to wait for surgery? Could it spread more or break out of the duct in a month?
thx
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Hi @breastquest, I'm sorry your DCIS increased in size. DCIS is not invasive even if it is high grade since it is contained in the ducts. It is possible cancer cells may have left the ducts and become invasive but they will not know until after the biopsy pathology. The wait for surgery is about the same whether it is DCIS or IDC (invasive) since cancer is not an emergency like a heart attack.
Cancer doesn't follow any particular timeline. My cancer was missed for two and a half years; I had DCIS next to the IDC. I imagine if it had been found earlier it would have been just DCIS but there is no knowing when the change took place. It's upsetting but I've come to terms with the fact that medicine is not perfect and the best thing you can do is deal with your current diagnosis. Hopefully it will be DCIS on its own but if it is early stage IDC it will be treated the same: lumpectomy, rads and aromatase inhibitors. All the best.
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“Cancer doesn’t follow any particular timeline “ Well said Maggie!
We are looking for certainty, straightforward paths, predictability, and a guarantee. Breast cancer comes with none of those things, even in two people who appear to be in similar situations.
Invasive cancers cannot be confined to the duct, because that is in situ, which is non-invasive. DCIS cells have to undergo changes to become cells that break out of the ducts. If you do have IDC, it is already outside of the duct.These invasive vs non-invasive cells are two very different things. It is not just that a cell was able to break free, but there are molecular differences in the two. This is true for LCIS/ILC too. While we most often focus on the lymph nodes, bc cells can spread through the bloodstream as well.
Breast cancer, even high grade, is relatively slow growing and depending on testing, scheduling, etc., will factor into surgical wait times. There is no standard but waiting a month or two is not uncommon. It is highly unlikely that this will effect your bc in any way. Again, bc is a slow growing cancer. Could more DCIS cells break out of the duct and become invasive? In theory, they could but bc cells are so tiny that it might not be possible to know. BTW, if you do have IDC, treating that becomes the primary focus as tx takes care of the DCIS as well. This is a stressful time for you. Try to focus on what you know to be fact right now and stay away from speculation. I know it might feel like it but lower stage bc is not a medical emergency. Just keep moving forward, even if the pace seems slow.
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This whole breast cancer is so scary, In November I was diagnosis
ductal carcinoma in situ invasive. Had lumpectomy and lymph node all are clear and margin. My doctor said the invasive was so small that is was very early. I have stage 1 with 2mm and also a grade 2. Er positive and Pr positive and HER2 is negative. I had 5 rounds of radiation. My issue is now the Hormone pill (letrozole) I have done so much research, and I am scared to death to try. I know people say try and see but I just can't open that bottle. I am 65 years old, and I already wake up with joint pain. I also did the PREDICT Modular and said 89% without hormone therapy will not return. I know nothing is written in stone, but I do not want take hormone pills, then take another one for joint pain and hot flashes. I cannot get this out of my head on what to do. I just had a friend that was on hormone pills and got it back in two years. I know I might not be making sense, but this is on my mind every minute. Is there anything else I can do instead of taking hormone pills. Is there any testing showing if it will come back.
Patrish-Bopper
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thx everyone for responses !
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Whether to do tx or not is always up to you. With breast cancer there are no guarantees and no cures, just the hope that whatever tx you choose will keep you recurrence free. AI’s like letrozole decrease your chances of recurrence but nothing eliminates it. What happened to your friend is anecdotal , not predictive of anyone else’s situation. But if you would like to believe it did, here’s the counter weight. I was stage IV de novo (bone met) for 13 years on AI’s , with no progression until recently. Again, this has no predictive value whatsoever and completely contradicts the theory you’ve come up with (that has no basis in fact). So what your friend or I have experienced says nothing about how you’ll do but bear in mind these drugs are not a cure. Chances of recurrence are lowered by taking them but never eliminated.
I am in the “try it and see how you do “ camp. Side effects vary wildly and other people’s experiences say nothing about how you’ll do. Whatever you choose, get to a point where you will feel no regret even if things go sideways (which can happen even 20 years later). Take care0 -
Thank you for your kind words. I am sorry you have to go thru all of this also. I appreciate your thoughts but I am still in a place in my heart why me! I know I am being selfish, and I have to think about off the wonder things in my life and how lucky i was I caught it early but this whole process has such a hold on me. I am going to call my doctor and discuss again my concerns and hopefully I get a handle on this.
Once again thanks for reaching out.
Patrish
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