HELP. I am so scared.
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What have all the doctors said about it?
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Still waiting to hear from MSK dr. The dr at Yale said that the diagnosis is still DCIS. The definitive answer is after surgical pathology. I am not really quite understanding the whole H and E slide and the calponin and p63 staining.
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That stuff doesn't matter, it's just lab testing procedures. The diagnosis is the important part and you'll get that soon enough. It's probably just going to be DCIS again. There's no need to analyze the lab report if it's just going to stress you out. I don't even look at mine until after my doctor goes over the results with me.
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Spoke to surgeon earlier today. She said it is a microinvasion....very tiny. No difference in treatment provided the post surgical pathology doesn't throw any other curveballs. I am feeling a lot worse. I don't really know how I can ever feel like there are no cancer cells floating around my body. I have negative hormone receptors so that scares me. I guess they don't test for HER2.
**Guess my husband called the surgeons PA because he saw how badly I was taking the news of a micro invasion. The nurse called me back and I feel even more anxious! She indicated that if DCIS with micro invasion is HER2+ and ER/PR- , chemo or herceptin could be part of the treatment. So much for micro invasion not being a big deal. This information is not the same as what the surgeon said....."treatment is the same". Having chemo or herceptin or tamoxifen is a lot different in my mind. And I worry how these drugs would affect my aneurysm or heart. It seems like the news just gets worse and worse.
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kkubsky,
I know you are scared but there are some realities we all need to deal with. First, DCIS is not tested for HER2. Second, there quite likely are cancer cells floating around all of our bodies. Medical science has not reached the point where every cell can be found and eliminated. Breast cancer cells, which can move through the bloodstream as well as lymph nodes, can take up residence, unseen and undetected, until something triggers their growth, orthey may remain dormant. There is simply no way to kill off every cell. That being said, if you have pure DCIS the odds are heavily in your favor. I am not trying to upset you further but knowledge and reality can actually be powerful and give you emotional strength
Focus on what you know now, period. As in life, there is no guarantee with respect to bc but again, the odds are in your favor. Don't fritter away your time and happiness over things that likely will never happen. I say this as a stage IV member. I have experienced your worst fear… ten years ago and I'm still here. Whether bc kills me in ten days or I get another 10 years, I am going to live as best as I can. Counseling, meds, whatever it takes to help you put things in perspective and enjoy your life. Again, no guarantees but it sounds as if your situation is quite favorable. Take care.
PS: re: micro invasion. Of course you didn’t want this to happen but this puts your risk of mets at a very small 1%. Try to maintain perspective 😊
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The news is not getting worse and worse. Nothing has changed since you began posting about having DCIS again. You still have only DCIS and your treatment is still the same. You literally have the BEST case scenario for breast cancer: DCIS aka Stage Zero. All of the Stage 1, 2, 3, and especially us Stage 4 people would love to have what you have instead.
You have posted about your struggles with anxiety repeatedly here and in the Facebook group but none of us can help you. Like so many people have told you, you need better or more professional mental health treatment. Whatever you're doing now is not working. I hope you can find help soon because you're wasting your life worrying.
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This thread has been slightly triggering for me. I remember being two weeks out of a double mastectomy and attending a Breast Cancer support group. (I had surgery first and then chemo). At that point I knew I was stage 3a, I had 6 positive lymph nodes and I also knew that I was HR negative and Her2 positive. I was completely depressed and distressed and joined the group to bring hope back into my life. The woman sitting beside me could not stop crying. She went on and on about how she’s been handed this death sentence and said she couldn’t cope at all. She was anxious and depressed and paralyzed by fear. Someone asked her what stage she was diagnosed at, and she said “0”. I’m a pacifist but in that moment, I felt like punching her. I would have given anything to be Stage 0. Or Stage 1. Or even Stage 2 for that matter. I not diminishing or dismissing her fears. I totally get it. But sometimes you need to read the room. And FYI, I never went back to that group
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From what I understand, I am no longer stage 0 if I have microinvasion. And of course the unknown is what will they find in the post surgical pathology? Hopefully nothing more. I wish I had an off switch for my anxiety or even a pause button but I don't. I am working with my drs to try and find the right solution medication/therapy wise. If I could just take my Ativan whenever I want I would be very happy to do so. But my dr does not want me to do that.
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Honestly, who cares if its a microinvasion? It'll be so small they could probably biopsy that thing out.
Look, its not helping you or others to use this site/FB as your anxiety dumping ground as your current coping mechanism. If you really cant deal with a piddly half ass barely cancer, then find a doctor who WILL prescribe Ativan or whatever you need, or pony up the money to get a decent cancer-focused therapist.
Most everyone else manages to take the bull by the horns and do what needs to be done to manage both physical and mental symptoms to live their best life while dealing with this, regardless of stage. Its not fair for you to blast your worries on here when you have repeatedly been told your news is NOT getting worse, you have the BEST possible prognosis, and to go get some HELP. The centers you are at are top notch and surely SOMEONE in one of them will be able point you in the right direction.
Sometimes I wish early stagers could walk a month in my shoes, or any others in late stage and be thankful to whatever entity they call on in their daily lives for having an easy, simple, tiny, garden variety BC.
I dont normally put people on blast like this but what you need cannot be solved by continually reviewing and combing biopsy reports and asking for Ativan on this forum. What will make you better is to get out and live life and ask/demand for what you need there.
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I am about to write a fairly lengthy response risking losing everything before it posts. I hate to see the last comment on this thread being so harsh. You have two dx’s and one is definitely health anxiety. You agree with this. You are seeking help and reassurance everywhere and prefer negative feedback to nothing. Many of us have had mental health issues and seek relief by doing exactly what harms us the most. I am uncertain why your attempts are so irritating to others as they could simply ignore you and avoid your post. And ignoring you would be much more helpful to you if they really want to help.
Posters here are correct in stating that you cannot get help here. You can get accurate information and reassurance, but neither of these help you.
The recommendations for health anxiety suggest that you limit your attempts to seek reassurance if that no longer helps. When you no longer find relief from valid information and your level of stress is unreasonable for the level of risk, you need to stop seeking this.
I ask you to stop posting here as I fear you may receive harmful feedback. You have a valid illness and should not be shamed or ridiculed. But the posters here cannot help you. They offered their best. Please get the level of professional help you deserve. Please stop opening yourself up for more negative feedback here. Take care
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Tb90 - wonderfully said. Thank you for your post.
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Since you are no longer "just diagnosed" and you have a specific diagnosis and treatment plan, it would be a good idea (for everyone) to let this conversation end, and for you to post future questions in the DCIS forum and/or the forums specific to your upcoming treatments.
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tb90, thank you for being so kind, yet for being so straightforward. Health anxiety is a real thing that I wish in no one. Those that don’t have it can consider themselves super blessed.
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I just wanted to add some thoughts before I end posting on this topic. I certainly never meant to trigger or anger other members. I was hoping to get information and clarity along with being able to express what I may have been feeling. Even a reality check was ok. But perhaps this was not the right place. If you have never experienced a true anxiety disorder, it can be hard to understand. It is not rational. I am fully aware of that and that it is not something that can be taken care of on this forum. The anxiety, whether or not it is in proportion to whatever is causing it, is a real feeling however.
I don't think that someone who has "just DCIS" should feel guilty that they don't have a more advanced situation. Of course Stage 0 is better than Stage 1. And Stage 1 is better than Stage 2, etc. My "just DCIS" caused me to have a lumpectomy in 2016, and radiation. It triggered a 5 year battle with anxiety and visits to various mental health professionals and medications, and a lot of lost time worrying about recurrence. It then proceeded to recur and stir up a lot of anxiety again. It also advanced to Stage 1 since there is at least one known microinvasion. It is causing me to have a mastectomy, node removal and whatever else post surgery issues arise. That is what my "just DCIS" has done for me up until this point. I certainly hope there are no surprises with the pathology but it obviously isn't going to come back as "oops, there is no cancer".
Having said that, I am aware that others have gone through even more and would love to have my "just DCIS". I would love to have "just DCIS, grade 1, less than 1 cm, positive hormone receptors, and no comedo necrosis. Or better yet, not to even be on this forum.
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kkubsky--I hope you are able to get a handle on the anxiety and even more hopeful that your pathology results are good. You may want to keep in mind that most people posting/responding to you are either waiting on diagnostic testing, in the midst of terrible treatment (chemo/rads), or maybe recovering from surgery. Most of us are anxious, frightened, sick, and trying our best to keep it together. We'd all love to be supportive but sometimes it's difficult when we are struggling with our own issues. It would probably be best for some posters to simply "scroll on by" instead of scolding you, but a little understanding is required on both sides. Good luck to you.
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No one wants to be here. Even those with advanced BC have anxiety. I have my Ativan at the ready. But your thread title in this forum will draw people with MBC in.
Here is the DCIS forum:
https://community.breastcancer.org/forum/68
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