Just found out today
I'm so glad there's a group like this!
Just got results from the patient portal - TN IDC stage 2 in my left just like I had 13 years ago in my right. The MRI I had in May was totally clean. As you can imagine I'm feeling all the feels. None of my providers has actually called to speak with me yet (in fairness the results came though this afternoon), but my surgeon's office did set up an appointment after I called to alert them to the results.
What questions do I need to be thinking about? Is there any chance this is a distant recurrence rather than a second primary? I'd welcome any words of wisdom. Thanks 💕
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I’m sorry that you find yourself dealing with this again. I’m fairly certain that a contralateral bc would not be considered a distant recurrence of your previous bc. Distant recurrences usually refer to metastatic spread, typically brain, bone, lung or liver (though other areas of metastasis are possible). Will they be comparing the tumor from your first bc to your current one? That will give you the info that is used to determine a new primary vs recurrence of the previous one.
Since you have access to the results, don’t hesitate to ask your doctor to clarify or explain anything you are not sure of. After all, most of us are not medical professionals. No question is too silly. I laugh at myself when I remember how little I knew about the complex world of bc. You can, and should ,take notes at your appointment or record the appointment. Take care0 -
Hi @kks_rd -
It's really a kick in the gut isn't it? You likely thought you had moved on from all this and WAM! — it's back. Sigh. Know that you are not alone in this. Some of us seem to just make these bc cells—-even years and years apart. (19 years for me.) My 'guess' is that they will treat is as a new primary, but that's up to the docs to determine.
The 2nd time around for me they did genetic testing. Nothing of interest was found.
For the most part, you know this drill. You've been there. Like the first time, once you have a plan in place, I think some of the 'shock' of it all calms down a bit. Not like you want to be on this journey once again, but you can do it!
Sorry you have to go through all this again. Know that we are here for you.
Hang in there.
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Thank you @mandy23 and @exbrnxgrl for responding so quickly 💓 it's tremendously helpful to hear from folks who get it.
My partner (he went through this with me last time) will be coming to the first appointment. Ironically, a few days ago I just found the notes he took from my first appointment last time and was reminded how good he is at it. I'm starting to compile my questions now.
I forgot to mention I'm BRCA1+ so I've always known this was a possibility... but like Mandy said....WAM! I even did risk reducing salpingoophrectomy, though with both tumors being TNBC perhaps that didn't make much difference. And for a many times as I've said to new survivors myself that the time between diagnosis and having the plan is just a unique kind of hell, I honestly had forgotten that fact myself. Thank you again for reminding me.
Some things are familiar though. Despite finding out at work, I resisted the urge to tell my boss because I know from experience it's best to wait until I have a plan and can talk specifically about how to balance treatment and work. I'm holding off on telling pretty much everyone for the time being, though I do plan to call my parents and brother tonight.
I really am so grateful for this place to connect. Hope whoever is reading this has a great day. I welcome any other input you amazing people have to share!
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So much has happened since my last update! I've met with my surgeon who says we should plan for surgery within a month or so. Chemo is likely, adjuvant this time.
Because I have existing heart damage from my first treatments (cardio-oncology follows me and I had robust cardiac testing last summer), I wasn't sure whether I'd be a candidate for rads. The answer to this question would drive my surgical decision… I can't explain why, but despite knowing my lifetime risks with BRCA1 I would still choose lumpectomy if possible (as I did last time). The surgeon is supportive of giving me a choice, he says thinking on this has changed over the years and overall mortality is no different whether I keep my breasts or not (though not morbidity; risk of a third cancer is greater if I don't do DMX but high-risk screening as I've been doing helps significantly in ensuring anything new is caught and treated early).
My surgeon called my radiation oncologist who graciously made room in her schedule to see me the next day. She, too, is supportive of giving me a choice. They have newer techniques to spare the heart and she would deliver 20 treatments (16 whole, 4 boosts) rather than the 33 I did last time.
My case will be presented to the "multidisciplinary care conference" aka tumor board by the surgeon's PA and my RO today. They want MO to weigh in. My prior MO retired but SO has a strong recommendation for a new MO - I asked in a local survivor group and people say she's terrific and a straight shooter. RO said since my tumor is small I might not need chemo at all? Honestly that terrifies me, despite how awful chemo is I would feel much more reassured getting it then not getting it. This answer, too, might drive my surgical decision.
I also notified my cardiologist's office. They told me I should come in right away (however when I got there, the cardiologist said this appointment was a bit premature 🙄). She did write a good comprehensive note with some considerations for oncology, and her nurse navigator will be attending the multidisciplinary care conference.
At this moment, I am eager/anxious to hear how the multidisciplinary care conference goes today. [They will also determine what other scans I should have — a complicating and possibly coincidental symptom in all this is that I've had unexplained lower back pain for about 4-6 weeks which was worked up by my PCP and there's no obvious cause. Pelvic u/s was normal which was a relief!] My plan is to sit with their recommendations over the weekend and try to make a surgical decision next week. However, depending on what they recommend, I might seek a second opinion just to be sure.
It's hard to say where I am emotionally. I haven't cried in probably a week, I don't feel anger. I am focused on getting my plan together and perhaps compartmentalizing. My partner, work, and family/friends are supportive. There's a local BC organization that offers 1:1 support, the person who does it is actually a acquaintance/friend, and I'm meeting with her today. Input from other survivors is tremendously important to me - all of you included. If you made it this far, thank you for listening and for any input you can share.
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Hi @kks_rd
Good to hear that you are moving forward down this dx/treatment road. Lots of decisions always. With my 2nd dx, at least I didn't have the learning curve from the 1st time even though there are always new things I didn't deal with then. I'm sure you feel the same.
Good luck with your continued gathering of information/opinions and I hope they lead you to decisions that you feel are the RIGHT ones for you!
Take Care. Hang in there.
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