How can I find mental health support when therapy waitlists are months long?

Hi Adrien, I’m also going through a terrible time emotionally. I’ve finished chemo, surgery and radiation, and am now on a PARP inhibitor and endocrine therapy. I’m supposed to stay on endocrine therapy for 10 years, due to having high risk HR + breast cancer, but I’m not going to make it. I can’t live like this. What part of the journey are in right now? I might be able to help, as I’ve been through most of it, and only lately had a hard time dealing with it. Please let me know.

Hi Vicki, I found a lump in my left breast in March. Went through months of trying to get a doctor, get a mammogram, then a diagnostic mammogram, that led to MRI. Surgery was require to remove golf ball sized tumor in left breast at 5 o'clock position. The surgeon right-sized my right breast so i'd be the same size on both sides. The drains were so painful. I could have said no to right sizing for my right side but that would mean additional surgery in the future to even them up. I'm second guessing myself. I am using alcohol to numb myself. Every night I sleep 2 or 3 hours. I'm in trouble . I asked my PCP FOR HELP. The system is very congested and it's months to get help. The docs are putting me on radiation and chemo because the surgeon removed tissue that showed spread to the lymph system. I'm scared. I need to talk to a mental health professional. So you know how to get help. I turn 65 on November and don't know if I'm going to be eligible for Medicare. I can't get help with that either. I'm in a mess and need help

Hello Adrian Daniel I'm sorry you have all these issues. When I was diagnosed with metastatic breast cancer, I contacted an attorney specializing in disability law. The attorney listened to me. He took breast cancer, depression, and Al my other health issues into consideration. After a few months I got my disability through and now I'm on Medicare. When I first filed I was only 60 and because my cancer started earlier, I got my disability back dated ans additional Money for the back date. Try talking to a disability attorney, you can Google one in your area, and see if he or she can help you. I'm on Enhertu currently, which is a mix of target and chemotherapy treatment. Throughout my treatments I was on Tamoxifen, Verzenio, fulvestrant, Truqap, and radiation on my spine and my breast. Yes, cancer causes mental health problems and your best bet is to ask for help at the hospital you get your treatment done. If they can't help you call the Komen foundation,they can help you too. Good luck and I hope you use some of the tools offered. Monika

I’m so sorry, Adrien. I have some idea about what you’re going through. I’m 62 now, was 61 when I was diagnosed. I was stage 3, with a huge tumor and 4 positive nodes. Before you do chemo, make sure it will be beneficial. There’s a blood test that tells you if it will work or not. I wish my oncologist had done that, because chemo did exactly zero for me. I didn’t need to go through it, i could’ve gone straight to surgery. I was given the test AFTER I finished everything (thx a lot), and saw that I have the PIK3CA gene mutation. This mutation is very common in HR+ breast cancers, and it keeps the chemo from effecting the cancer cells. Don’t have chemo if it’s not going to help you. I can tell you all about my experience. Also, when it’s time for radiation, insist on proton therapy. Since your cancer is on your left side, your insurance will most likely pay for it. Proton radiation spares healthy tissue (like heart and lungs) while being more effective at destroying the cancer than traditional (photon) radiation. I also struggle with sleeping, due to the endocrine therapy I’m on. My oncologist prescribed ambien for me, which I take only after I’ve gotten my initial 2-3 hours. It works pretty well, so far. Please don’t drink alcohol! It will make everything worse, including your state of mind. I really think I might not have gotten cancer, even with my gene mutation, had I not been a regular drinker. It actually causes breast cancer. You’re not alone, my friend. I’m here for you.

Hi Vicki You and I are about the same age. In November, I'll turn 62. I have been fighting breast cancer since 2018, and in 2023, I was diagnosed with MBC. I too, have the PIK3CA mutation as well, and for a little over 7 months, I took Verzenio, but this medication didn't work right because of the gene mutation. Next, I was on Truqap, which is a target therapy specially developed for the PIK3CA gene mutation. However, Truqap only worked or about a year before it stopped. Now, I'm on Enhertu, which is a form of chemotherapy that targets therapy for the gene mutation, and the chemotherapy of the medication is supposed to kill other cancer cells as well as tumors in my body. My PET scans show that this medication is working, and hopefully, it will kill the rest of the cancer in my body. I have about six more treatments to go. The Enhertu infusions cause fatigue, hairlos, and nausea. Before I get the infusion, the nurse gives steroids and an antinausea medication via the IV to me. This helps with some of the side effects , and thus far, I'm feeling ok. I lost a few pounds and my hair, but ovaerall, I feel good. So, I'm not complaining. Hopefully, you and everyone here don't feel too bad throughout this cancer journey. I wish you all the best for all of you. Hope, Strength, and Positivity! We only live once.

What area of the country are you in?

Hey Monika, this is great information, thank you. I have a couple of questions: were you put on endocrine therapy at any point, and had you gone through chemotherapy of any kind prior to starting Enhutu?

Hello Vicky At first, I was on Tamoxifen and took this medication for about four years. After the cancer turned malignant, I first took Verzenio, and fulvestrant or Faslodex. About 12 months later, Verzenio didn't work anymore, and because of the gene PIK3CA, I was put on Truqap. Truqap was supposed to get rid of the cancer, but that didn't work either 😕. Now, I'm on Enhertu, which is both chemotherapy and a target medication.

I live in Arkansas

Monika have you signed up for Medicare? How to sign up for Medicare when you turn 65 (in Arkansas) When you’re about to turn 65, or if you're already 65 and haven’t signed up yet, here’s the general process: 1. Know your eligibility window (Initial Enrollment Period) You have a 7‑month Initial Enrollment Period (IEP): the 3 months before your 65th birthday, the month you turn 65, and the 3 months after. You should try to enroll during that period to avoid possible late penalties. If you already receive Social Security (or Railroad Retirement) benefits before turning 65, you may be automatically enrolled in Medicare Part A and Part B. Arkansas Insurance Department +2 Social Security +2 If you’re not automatically enrolled, you’ll need to sign up manually. Arkansas Insurance Department +1 2. Enroll in Original Medicare (Parts A & B) You can enroll in Medicare’s hospital (Part A) and medical (Part B) coverage. To do that: Online via Social Security: Use the Social Security Administration website to apply for Medicare. Social Security By phone: Call Social Security at 1-800-772-1213 (TTY users call 1-800-325-0778) Social Security In person: Visit your local Social Security office. Social Security +1 When enrolling, you may need identification documents like your birth certificate, Social Security number, and recent tax or employment records. arkansasbluecross.com +2 Arkansas Insurance Department +2 3. Choose additional coverage (if desired) Once you have Original Medicare, you may want extra coverage options: Medicare Advantage (Part C): private plans that include Part A, B, and often drug coverage. Prescription Drug Plan (Part D) Medigap (Medicare Supplement Insurance) to help cover out-of-pocket costs. In Arkansas, Medigap premiums cannot vary by age (for people 65 or older) — i.e., there’s “no age rating.” healthinsurance.org Also, when you turn 65 and enroll in Part B, that triggers your 6‑month guaranteed issue window to purchase a Medigap plan without medical underwriting. overtonagency.com +1 4. Be aware of deadlines and penalties If you miss enrolling in your IEP, you might have to wait for the General Enrollment Period, which runs Jan 1 to March 31 each year. arkansasbluecross.com +3 Arkansas Insurance Department +3 overtonagency.com +3 Late enrollment in Part B or Part D can result in penalties (you pay more each month).

For immediate mental health care call 988

Dear J Miller Thanks for the fast reply. When I was 58 and diagnosed with MBC, I sought the help of a disability attorney. Since two years, I have been receiving disability Social Security, and since May of this year, I'm receiving Social Security with part B. I was fortunate my husband was in the service and later working for the government. We have TICARE, and they cover my deductibles. Thanks again. Maybe a member of this group can use this info. Finally, if anyone can not work because of breast cancer, find a lawyer who specializes in disability. The attorney will take the breast cancer and all diseases contributing to you not being able to work. I wish everyone love, happiness, and strength to make it through this journey 💓 Monika

Also, for anyone over the age of 55 each state has PACE which is all inclusive care. It means you have to give up your current providers and use theirs. They provide everything.

So happy to hear you have resources, I have a Medicare advantage plan and through it I have access to Doctor on Demand. I was able to get a therapy appointment and psychiatry appointment very quickly. I feel that a cancer dx is so isolating and the internal emotions and thoughts are overwhelming. I am finally starting to feel a bit grounded. Thank you for sharing and I hope you get the support you need as soon as possible.

Great info, J!

Monika, are you HER2+?

Im so sorry its very hard I know but what helps me is just doing one day at a time !

Hi Vicky, yes I'm HER2+

Adrien it sounds like you’re dealing with a lot and I can appreciate that. I’m 68 and was diagnosed with TNBC almost a year ago, and after chemotherapy, surgery, radiation and now I’m on oral chemotherapy for 8 months. Initially it is overwhelming as there was so much I did not understand. But 2 things helped me tremendously….positive thoughts and I kept moving throughout all of it. I kept walking, Pilates and even worked with very light weights. Yes, there were days I felt like shit! I listened to my body and only did what felt right at the time. I also talked to a therapist initially and she helped. I realized that I had support and needed to accept the help offered. I hope you are able to find someone to talk to and also get the Medicare benefits sorted out. Good luck with your journey and keep a positive outlook. You got this!!

I am right there with you! I feel so alone and reading further into how to help the pain and nausea,well no one answers thar question. As a matter of fact I walked down the hall to get fitted for the last part of Radiation and 3 techs gave me 3 different answers to the same question! I don't feel much love or concern from them after starting Radiation. It's like cows being hurded in and out.Stupid statements being said! Just so done!

I am finding that the medical professionals only have a limited understanding of our emotional and mental wellbeing. Finding support whether here or in your city I have found to be much more uplifting and positive to help me cope. I have a peer support person from cancer hope network who has been through it and is now helping me. We need each other!

Hello All, The medical profession does not take into consideration the mental health part of this. It's what brings us to our knees along with the treatment, surgeries and feeling alone. I did speak to social workers that my team recommended. We need to talk to a professional about how we are coping and feeling. This is a lot. Try to get a patient advocate, I now have one my second time around. I just got diagnosed again on April 2nd. Again, my mental health is affected. But I'm trying to get help. National Breast Cancer Foundation is great too. Good luck to all

Finding immediate mental health support during a cancer journey can feel urgent when traditional therapy has long waitlists. Consider reaching out to cancer-specific support services like those offered by the American Cancer Society, many hospitals' patient support programs, or online therapy platforms that often have shorter wait times than in-person providers. Your feelings are completely valid, and there are people who want to help you through this challenging time.