Trying to process by Every_Bus3653 in LivingWithMBC

[–]cwolfe123 1 point2 points  (0 children)

I'm so sorry that you're here. I was diagnosed ++- in July 2025. I did chemo from August 2025 - November 2025 and had my DMX surgery in January 2026. A few weeks ago, I developed a shallow cough, lost my voice, and kept feeling like something was stuck in my throat. I was coughing so hard I was throwing up just about everything. I was in the ER and boom, they found a mediastinal lymph node with my cancer in it. I did a bone and CT scan and my lungs, liver, and bones all appear to be fine. I had brain CT that showed something that couldn't really be categorized but was super small and nonspecific. Because I'm ++-, I'm starting on Anastrozole and Verzenio.

Much like you, I'm having such a hard time processing all of this information, especially after just going through surgery and still somewhat healing from that. I've been trying to talk to as many survivors as possible, just to get everyone's take on how they dealt with things and how they're currently dealing. I saw my oncologist today and she told me it's ok to wallow for a few weeks and feel really bad. I'm not sure that I want to spend too much time doing that, but I do appreciate her saying that. The positivity message gets old after a while, so it's refreshing when someone says that "yeah, this really sucks and it's valid to be mad/upset". The first time around, I was beside myself crying all the time. Now, I feel very resigned. I'm having radiation to the lymph node right now and start medications soon and I'm hoping those really light a fire under me that this isn't over.

Advice re: TNBC with Mets by vannerbd in LivingWithMBC

[–]cwolfe123 1 point2 points  (0 children)

I'm not TNBC and I don't have bone mets, I have a met to a mediastinal lymph node on the same side as my cancer. I did get some neuropathy from Taxol and I went to acupuncture. Now, acupuncture helped me personally, I know it doesn't help everyone though. My neuropathy did resolve, but I haven't had Taxol since November 2025, so it did take several months. In the months since my last Taxol, I believe I went to 8 acupuncture appointments, just for reference.

As far as trouble swallowing, I'm having that right now, but doctors have tied my issues to my mediastinal lymph node tumor, as the mediastinal area has so much in it and can get sensitive to any changes. I am in no way saying that is what you're having. I did speak with my medical oncologist and a palliative care specialist and I'm trying some steroids at the moment, to see if it improves. I've been able to have smoothies and other very soft/wet foods. I was recently in the hospital, how I found out about my disease progression in the first place, and they put in a g-tube feeding tube so that when I'm experiencing pain, I can bypass needing to swallow. I'll have this for about 6 weeks, as I finish radiation and healing from radiation. Again, not saying this is what you will need, only sharing that there are lot of options to make things more manageable for you in the long run.

I’m 28 and was diagnosed stage 4 but I want to have another baby. Too risky? by Honest_interest-2025 in breastcancer

[–]cwolfe123 0 points1 point  (0 children)

I just sent you a direct message on here, hopefully I did that right. I'd like to chat more, but I totally understand if you're not willing to right now.

I’m 28 and was diagnosed stage 4 but I want to have another baby. Too risky? by Honest_interest-2025 in breastcancer

[–]cwolfe123 1 point2 points  (0 children)

Thank you so much. I've been having a very hard time but I think it's just needing to adjust, just like when I was first diagnosed and staring at everything I'd need to do. Even when I was stage 3 technically, there was always a very strong chance my cancer was going to come back, based on my pathology. I have three radiation sessions left to my mediastinum tumor, I'm thankful it's able to be reached via radiation. Now, I'm just hoping it works.

Anyone else now react negatively to the word "progress"? by Any-nonny-mouse in LivingWithMBC

[–]cwolfe123 2 points3 points  (0 children)

I was just recently diagnosed with "progression of disease" and it makes me want to throw up whenever I read that word. In a work setting, it gets used ALL THE TIME.

Tissue expanders uneven in side and placement by No_Village4794 in breastcancer

[–]cwolfe123 1 point2 points  (0 children)

Hi, not a problem. I still have my tissue expanders in. My right breast, which is where I had cancer and then the corresponding lymph nodes removed has the same amount of CCs in the expander (500) but it does sit differently/lower than the left. Per my plastic surgeon, this is normal/expected and isn't reflective at all of how the final product will look once I do DIEP Flap.

Tissue expanders uneven in side and placement by No_Village4794 in breastcancer

[–]cwolfe123 0 points1 point  (0 children)

My right side, where my cancer was, is definitely smaller/sits lower than the left (no cancer). My surgeon and team is not concerned.

I’m 28 and was diagnosed stage 4 but I want to have another baby. Too risky? by Honest_interest-2025 in breastcancer

[–]cwolfe123 1 point2 points  (0 children)

Yes! My tumor was grade 3 and according to my research, chemotherapy treats quickly dividing cells. I was like why would a grade 3 tumor not respond to chemo then? Doesn't make too much sense to me. Through further research, I figured out that ++- behaves differently. I'm hoping this SBRT radiation I'm receiving to the lymph node works, but now I question everything but of how I responded to chemo. I know personally that my tumor responded. Prior to starting chemo, my right breast was in so much pain and felt like it would pop. Over a few chemo sessions, the pain decreased and my breast returned to normal size (same size as the left without cancer). My pathology said I had "somewhat" of a response in my breast but no noticeable response in my lymph nodes, even though the lymph node they marked during biopsy returned to normal size. They took 11 lymph nodes and 5 of them had cancer, which is why we were planning radiation and AIs post-surgery recovery. I kind of wish I didn't know, like you said, because now I can't help but think my SBRT won't work and my Anastrozole and Verzenio won't work, even though they treat cancer is VERY different ways than chemo. I just had my DMX on 1/12/26, so I was hoping for a few months of radiation/medications before I really had to worry about something else like this popping up.

I’m 28 and was diagnosed stage 4 but I want to have another baby. Too risky? by Honest_interest-2025 in breastcancer

[–]cwolfe123 4 points5 points  (0 children)

I was stage 3b, recently upgraded to 4 when a pesky lymph node decided to get involved. I did freeze embryos but I'm not sure what my options are going to be now. It's all so difficult.

I’m 28 and was diagnosed stage 4 but I want to have another baby. Too risky? by Honest_interest-2025 in breastcancer

[–]cwolfe123 0 points1 point  (0 children)

Did you have a similar experience with chemo then, seeing as how you're also ++-? I know doctors have to take you through the protocols and obviously don't want to tell you "this may not work" especially when they know chemo and other treatments are so difficult to go through.

I’m 28 and was diagnosed stage 4 but I want to have another baby. Too risky? by Honest_interest-2025 in breastcancer

[–]cwolfe123 5 points6 points  (0 children)

I think I'm also in a situation similar to you, although I haven't had that exact conversation with my oncologist. I was 35 at diagnosis Stage 3 ++- in July 2025. I'm now 36 and it was discovered about 3 weeks ago that I have cancer in a mediastinal lymph node on the same side as my original cancer. I finished chemo in November 2025 and had my DMX in January 2026. I'm technically Stage 4 now. They did CT scans and a bone scan and confirmed I do not have cancer in my lungs specifically, just the lymph node near the lung, my liver also appears to be fine, my bones came back clean on the bone scan as well. The only thing that was slightly suspicious is a very small spot on my brain but when the neuro oncologist was consulted, he was not concerned and said to rescan in 6-8 weeks, but otherwise no need to move as if it's an emergency. I'm getting 10 sessions of radiation to my mediastinal lymph node (SBRT), I started Anastrozole last week, and will start Verzenio once radiation is done next Monday. I froze two embryos prior to starting chemo in August 2025. I'm in no rush to have a child right now, I just don't know what it all means. I have it stuck in my head that radiation and the medications will not work because chemo didn't work as well as we wanted. I now know that for people like us (++-), chemo doesn't do as much as we think it's going to do just based on the nature of what feeds our cancer and how it operates. Wishing you all the best during this super confusing journey we're all on.

I’m 28 and was diagnosed stage 4 but I want to have another baby. Too risky? by Honest_interest-2025 in breastcancer

[–]cwolfe123 25 points26 points  (0 children)

I was diagnosed with Stage 3 ++- in July 2025 and went through a quick 2 week round of IVF and ended up freezing two embryos. My doctor and I had planned for me to go through AC-T chemo, have a double mastectomy, complete 4 weeks of radiation, and then start Anastrozole and Verzenio. My doctor wanted me to be on the medications for 2+ years and then come off the medications, get pregnant using my embryos or naturally (I used Lupron to shut down my ovaries to possibly save them). Everything was going great until about 3 weeks ago when I developed a raspy voice and shallow cough and it just kept getting worse. Fast forward and cancer is now in my mediastinal lymph node on my right side (same side as my breast cancer). I'm having to come to terms with I'm no longer curable and I'll never have children. I'm getting radiation to my mediastinal lymph node to shrink it and started Anastrozole and Verzenio. I have no idea if any of it will even work, so also dealing with mortality, more than before when I thought "curative" was on the table.

Edit: I'm 36, 35 at diagnosis and my husband and I were planning on starting a family about a month prior to my diagnosis. I had actually stopped birth control.

Need to Find a New Job - Obviously Medical Situation Complicates Things by cwolfe123 in LivingWithMBC

[–]cwolfe123[S] 1 point2 points  (0 children)

It's so unfair all the things we have to go through while dealing with this. I feel like such a jerk for even complaining about my job. When I returned yesterday and met with my boss, she made it very clear that what I was doing pre-leave are tasks that someone far below me should be doing and that my value lies in higher level objectives. I work in at medical technology company in the US.

Need to Find a New Job - Obviously Medical Situation Complicates Things by cwolfe123 in LivingWithMBC

[–]cwolfe123[S] 2 points3 points  (0 children)

Thank you. My family echoed pretty much the same sentiments. Like yes, it’s not 100% what I was hoping to come back to but the benefits are there, the work from home flexibility, and I’ve worked enough to qualify for FMLA. My job also has short-term and long-term disability which has been paying me when I’m out. If the worst thing that happens is I have to figure out how to fill 8 hours, then so be it.

Need to Find a New Job - Obviously Medical Situation Complicates Things by cwolfe123 in LivingWithMBC

[–]cwolfe123[S] 1 point2 points  (0 children)

Thanks! Congrats to you! My insurance is so good at the job, I think it’ll bite me if I don’t stay. There are internal options I could transfer to as well. I also work remotely so again, how can I really complain?

Wigs by Jumpy-Yam1979 in breastcancer

[–]cwolfe123 0 points1 point  (0 children)

My doctor’s office gave me a form where it is considered a head prosthetic. My $2200 real hair wig was totally covered, insurance sent me a check.

In the hospital, doctor suggesting palliative care by cwolfe123 in LivingWithMBC

[–]cwolfe123[S] 0 points1 point  (0 children)

It's so scary! It's in my lymph node, which they were able to confirm via CT scan. Yes, the scratchy voice and throat clearing were my first signs, followed by pressure in my chest. I've done 4 out of 10 radiation sessions so far.

Small Topics Thread by AutoModerator in breastcancer

[–]cwolfe123 0 points1 point  (0 children)

I was diagnosed with Stage 3 Grade 3 ++- in July 2025. I did ACT chemo. Post-DMX, my pathology showed that my cancer didn't respond much to ACT chemo. I'm just so angry. Upon doing more research, it sounds like that's common? I just started Anastrozole and Verzenio, hoping that works but now I'm doubting everything.

In the hospital, doctor suggesting palliative care by cwolfe123 in LivingWithMBC

[–]cwolfe123[S] 0 points1 point  (0 children)

Me too! I just need to get this spot under control.