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Topic: How to find mental health resources

Forum: Stage IV/Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Aug 14, 2019 01:43PM - edited Aug 14, 2019 01:47PM by Moderators

Moderators wrote:

After a metastatic breast cancer diagnosis, it's not uncommon to experience stress, anxiety, fear, or depression. What effects did your diagnosis have on your mental and emotional health, and how did you decide to address it? Did you decide to see a therapist, take medication, join a support group, or try another approach? Thanks for your insights!

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Aug 14, 2019 03:20PM candy-678 wrote:

I come here for my support. I live in a rural area and we do not have a cancer support group in my area ( I checked ). I wanted to go see a counselor, just to talk it all out. I called a counseling center in my area. I have health insurance, but it was going to cost me $35 per session - after my deductible. So if I went once a week that is $140 a month out of pocket. Cannot do that when pinching pennies due to quitting work and going on SSD. I get my treatment at our local cancer center which does not have social workers or access to a counselor. I heard some larger facilities have mental health services INCLUDED for the patients. Not mine. When I go for my appointments the nurse asks the standard questions about depression, but never offers any advise on how to treat it. I think "if you are not going to offer help, why ask the questions". I do think that with our diagnosis- MBC- that mental health should be included in our care. Standard. Same as prescribing the standard meds to treat the cancer. But mental health is definitely overlooked.

Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo, then switched to hormone therapy/targeted therapy. Also using Xgeva injections for bone mets Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Chemotherapy AC Surgery Lymph node removal: Sentinel; Mastectomy: Left
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Aug 14, 2019 03:47PM - edited Aug 14, 2019 03:47PM by Anotherone

I come here as well.

I did not find local metastatic support group - I really could not have coped with being part of the primary diagnosis group as we would be in very different places and I don't think I would be sympathetic to them and I think they would be scared of me .

I tried to call McMillan cancer support line a couple of times but it was either out of hours or I just hung up before being attended due to feeling it will not help .

Guided meditation helped - listening to recordings on YouTube.

Primary in 2006, metastasis 2019. Sorry can lot log in diagnosis and treatment info properly - it gets jumbled. Dx 10/10/2006, IDC, Left, Stage IIIC, metastasized to lungs, Grade 3, 4/9 nodes, ER-/PR-, HER2+ Dx 7/1/2019, IDC, Stage IV, metastasized to lungs Chemotherapy 9/17/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy External: Chest wall Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement
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Aug 14, 2019 05:33PM LoveFromPhilly wrote:

Mental/emotional health is incredibly important to me. I have used several avenues to find the perfect blend of support including:

1) When I was diagnosed, I saw a couple different therapists before settling in on one woman who is a psychologist. We just clicked and I knew I was home. 2+ years later and I still see her every other week, or more, if there is a need. Initially, I was seeing her 2x/week, then went to 1x/week and now down to 1x/every two weeks which feels good for me right now. She has REALLY helped me get my life on track after having the diagnosis. We have worked through the stress, anxiety, difficult convos with family and friends, and also she has helped me get my act together around finances (always been something I have not given much thought to and I have been a person who has flown by the seat of my pants). So now the financial strain of MBC and my need to take good care of myself and the $$ it will cost to do so is a stressor for me. I have always been a huge fan of therapy and have voluntarily taken myself to therapy since I was about 22 years old, on and off again. I have worked with the most amazing therapists as well as fired a couple terrible ones.

2) I also get massages through UniteForHer's program, every two weeks. I consider this somatic therapy. It works out the issues in my tissues that get stressed out from all the emotional/mental/and pharmacological impact on my body. I love my massage therapist and we have a very loving and open dialogue. She is the head of The Reiki School in Philadelphia and trains reiki practitioners who volunteer at one of the big hospitals here, giving free reiki treatments to people in the oncology centers (including patient's loved ones/support/caregivers).

3) Medication became a necessity for me after I tried to cope with the emotional aspect for a year with some success but not enough. I am one of the fortunate people who's oncology center also have oncology psychiatrists on their team. So I met with them and got myself onto Lexapro which feels like a godsend!

4) Guided meditation helps me get through the dark moments and stormy weather of my mind. It helps me calm down and slow down or stop the "what ifs." It is what helps me make through sleepless nights and pulls me out of deep depressive thoughts.

5) Lastly, exercise is therapy to me and so important for my mental health. I struggle daily to get myself to exercise (in fact, I haven't done any today, yet!). I am my own worst enemy when it comes to exercise. I ALWAYS feel better when I am done, and so proud of myself. The day feels complete. If I don't exercise, I start to feel somewhat claustrophobic and itching to get out of my skin. I feel anxiety creep in. Exercise helps me clear this away. When I exercise it typically includes some levels of cardio, weights, core, stretching and strengthening. It doesn't always feel good the next day, but it gets easier the more I do it.


๐Ÿ’ซ ๐Ÿงš๐Ÿพโ€โ™€๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿพโ€โ™€๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿฝโ€โ™‚๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿฝโ€โ™‚๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿพโ€โ™€๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿพโ€โ™€๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿพโ€โ™€๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿพโ€โ™€๏ธ Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/4/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Aug 18, 2019 11:20PM LoveLau wrote:

so you were able to get the anxiety down

They are going to start me i. A maoai inhibitor patch next week. I am hoping it will give me somenrelief from the anxiety. I am in remission. But cant get around that. I am treatment resistant. Getting hip replacement tuesday. Did anyone use the patch how did it work. Thanks li e to all.

Dx 10/2016, LCIS/ILC, Right, 1cm, Stage IB, Grade 2, 1/24 nodes, ER+/PR-, HER2-
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Aug 19, 2019 12:34AM illimae wrote:

After the initial shock and once I began treatment, I just kind of looked at the big picture. Iโ€™ve always been pretty calm and happy and I was tolerating chemo better than I expected, I had no pain and a wonderfully supportive husband. I decided if I felt good, I was good, not in denial but not very fearful either. I am occasionally thrown into a panic over a new pain or scans but quickly pull myself back and like Philly, exercise is a key component, mentally and physically.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/1/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/1/2017 Herceptin (trastuzumab) Targeted Therapy 1/1/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, Stage IV, metastasized to brain Radiation Therapy 10/19/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/22/2019 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 20, 2019 12:42AM Andi67 wrote:

This thread is so timely for me.

This has been my main support group. I love the women on these treads and really feel like they are my friends and understand me so much better than anyone else that is physically around me. I have never wanted to join a "live" support group here in Denver... not sure why. I do take anti anxiety medicine nightly (small dose of Adavan) and I have recently started taking CBD oil for anxiety and insomnia, and it has already made a difference. I also try to exercise consistently. I think I need to find that massage therapy service that Philly is talking about!

However, it's been 7 years since my Stage IV diagnosis and just in the last two days I have realized I need 1:1 therapy or counseling, primarily (this is going to sounds super selfish) to deal with the increasing anger that I feel that nobody around me - husband, kids, siblings, parents, etc...even acknowledge that I have cancer and that things could go south and they could lose me. They think that because I look and seem "normal" that I am all well in side and we are out of the woods. They don't see this site and the fact that we are losing people constantly. I'm not looking for special treatment (okay, maybe just a teeny bit) but some sort of attention would be nice. I seriously have anger issues. I was JUST thinking that 1/2 hour ago and I picked up my laptop to check in with all of you and found this thread.

So thank you, Moderators, for asking the question. If you ask again in a month my answer will be that I am in counseling to cope with all of this.

XO

Andi

Dx 4/2009, DCIS, <1cm, Stage IV, Grade 2, 0/3 nodes, mets, ER+/PR-, HER2+ Surgery 5/9/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 9/14/2012 3DCRT: Breast, Bone Chemotherapy 11/20/2012 AT Hormonal Therapy 3/12/2013 Arimidex (anastrozole) Hormonal Therapy 10/12/2013 Aromasin (exemestane) Hormonal Therapy 3/14/2014 Faslodex (fulvestrant) Hormonal Therapy 5/6/2014 Arimidex (anastrozole) Targeted Therapy Herceptin (trastuzumab)
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Aug 20, 2019 02:32AM Anotherone wrote:

I think I understand Andi

My soon to be ex decided that the way to behave was as if nothing was happening. When I told him I was not getting what I needed from him he said "that's the way I deal with stress". When we were thinking about arranging councelling for my daughter I said we may benefit as well and his response was "I don't need it I am coping well". I told him "so your function is to support me , i am telling you I do not get the support I need from you and your response is that you coping well ??!!" The response was silence..

Andi , I made an observation on human nature , not necessaroly about cancer but now you complained about your nearest and dearest I see it fits very well:

When you tell people something hurts (either physically or emotionally) unless you show them your distress they don't feel full empathy. You and me are the same , it's just human nature. We may understand mentally but we are not going to feel for other person the same if other person does not show us how it hurts.

Similar with cancer - unless we related to them every little detail - thought , feeling , info from here- unless they know users of this website by nickname as you do and follow their journey- they can not possibly emphasise.. I know it sucks.

I had a bbq at mine a couple of weeks after diagnosis and I felt as if a massive plexiglass wall divided me from my guests and those were very close friends...

Primary in 2006, metastasis 2019. Sorry can lot log in diagnosis and treatment info properly - it gets jumbled. Dx 10/10/2006, IDC, Left, Stage IIIC, metastasized to lungs, Grade 3, 4/9 nodes, ER-/PR-, HER2+ Dx 7/1/2019, IDC, Stage IV, metastasized to lungs Chemotherapy 9/17/2019 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy Herceptin (trastuzumab) Radiation Therapy External: Chest wall Surgery Lymph node removal: Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement
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Aug 23, 2019 01:22PM Bliss58 wrote:

Coming here and a couple FB pages are my biggest support. For the most part I'm doing okay emotionally, but it does frustrate me when my family and friends "think I'm fine." Part of it I think is my fault for trying to protect them from my dx. But recently I've thought, no, I need to really bring them in and make them aware of what I'm going through - really emphasize the Stage IV. Heck, until just recently my husband didn't even realize I'm going for scans every 3 mos. or that I was receiving monthly injections or why my joints are so bad. I do think men tend to cope by denying what's in front of them. DH needed a CT and made such a big deal about it. I asked him if he realized I do that quarterly plus nuc bone scans? He said, no - he had no idea! I thought, really? Where have you been?! So I've also started talking to him about a future when I'm no longer here, that I won't outlive him; he was very surprised by that. Initially, it was uncomfortable for my sister and mother to talk about Stage IV with me, but now they do understand and are my biggest support, along with my DD, who is fully aware and supportive though she fears losing her mother too soon.

Dx at 56, married, one DD. "Eat half, walk double, laugh triple & love without measure." (Tibetan proverb) -- 6 rounds TCHP to 10/15. Zometa 11/15 every 3 mos; ended 5/18. Now monthly Xgeva 6/18. Quit Letrozole 1/18. Dx 6/1/2015, IDC, Left, 4cm, Stage IIIA, Grade 2, ER+/PR+, HER2+ (FISH) Dx 6/30/2015, Stage IV Radiation Therapy 12/16/2015 External: Bone Surgery 2/17/2016 Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy 5/9/2016 External: Lymph nodes, Chest wall Hormonal Therapy 2/1/2018 Aromasin (exemestane)
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Aug 23, 2019 03:15PM LoveFromPhilly wrote:

wowwwwww Bliss about your hubby! Thatโ€™s soooo nuts!!!!

People process difficult news so differently. It amazes me that this person can be married to you and NOT know these things.

Iโ€™ve been sharing more about my diagnosis with folks, not everyone, but people here and there. I am chalking it up to educating the public. I still get the โ€œwow you donโ€™t LOOK like someone with stage 4 cancer!โ€ alllll the time as a response. I donโ€™t get mad or angry or defensive, I just think itโ€™s interesting to note. Most people donโ€™t know about MBC, or they donโ€™t understand what it means to be in lifetime treatment for MBC.

I guess I take it as a compliment that I look so well still. I have to be grateful for the little things, like I still have my looks I guess?

The mind wants to believe what the eyes can see.

๐Ÿ’ซ ๐Ÿงš๐Ÿพโ€โ™€๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿพโ€โ™€๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿฝโ€โ™‚๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿฝโ€โ™‚๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿพโ€โ™€๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿพโ€โ™€๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿพโ€โ™€๏ธ ๐Ÿ’ซ ๐Ÿงš๐Ÿพโ€โ™€๏ธ Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/4/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Aug 23, 2019 04:07PM Moomala wrote:

I was just diagnosed five months ago and I'm' still processing the diagnosis plus all the appointments and scans and things I have to do now. I've experienced stress, depression, anxiety AND anger over the last five months.

I love coming here find answers to questions and just to reach out and connect with someone else who might be able offer me a little hug across the miles and a little bit of understanding. There is so much experience offered with different treatments and side effects and things that I can typically search out whatever I'm concerned about and find numerous posts with tons of answers from people who have more experience.

I do have a support group here with our local Breast Cancer Coalition and they are an absolutely wonderful group of people. Our meetings occur once per week and the BCC here also offers us seminars and workshops on cool topics. (This month's topic is Forest Immersion as a source of healing.) We socialize outside of support group time so they really have become a very close group of friends.

I am not on medication for depression but I am also not ruling it out. I take alprazolam at night to help me with sleep - otherwise I'm just up and down all night. I do see a psychologist every other week. Currently we're working on that I'm avoiding the grief of my diagnosis by spending way too much time on social media and not enough time being present to things that are more nourishing. He's right about that. BCO aside (which I don't consider social media) I spend way too much time just browsing social media and not doing more of the things I love to do.

Exercise is critical for me. It helps me keep pain levels at a minimum, keeps me from feeling stagnant and gives me a feeling of control and accomplishment over my disease. Because of bone issues, I've had to change my mindset a bit. I used to run 5K regularly and lift weights. I am no longer allowed to do that but I'm finding new ways to feel physically challenged.

Great family support. My mom and my sisters are great. My kids and grandkids are super supportive. My husband pulls away a little but I'm giving him time and space. This is all pretty new for him too. Andi I really understand what you mean about the anger that people forget you have cancer. I am so physically active and still working and am a quite upbeat person. But my back hurts in one spot or another and many times several areas from all the damage that cancer has done. But becuase I'm always wearing a happy face in front of people it just doesn't show and I do get angry at some of the things people expect of me. Some days I need to keep my back a little quiet and other days I can move mountains. I don't expect people to be mind readers but it's also hard to think that others' expectation is that I can just be the person I was before. That person was go go go until all hours and there's no way I can do that anymore.

Dx 3/1995, IDC, Right, 2cm, Stage IIB, Grade 1, 1/17 nodes, ER+/PR+ Dx 3/2019, IDC, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2- Targeted Therapy Afinitor (everolimus) Hormonal Therapy Aromasin (exemestane) Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole)
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Aug 23, 2019 08:27PM Simone80 wrote:

It has been 7 months since I was diagnosed. I was a mess at first, so depressed. Then I started to educate myself on MBC. I soon realized it is not an immediate death sentence and I needed to pull myself up so I could enjoy the time I had left. I use several methods to manage stress, anxiety, depression etc.

1. I pray and meditate daily. I have Amazon prime and found a couple of good meditation videos I listen to.

2. Exercise daily. At least 30 mins of something. Walking, swimming, biking, yoga etc. I switch it up to keep it interesting. Not only has this helped with my moods and fatigue, I've also lost a few pounds.

3. I found breast cancer online support group. This has been a big help to me as now I can talk to others that "get it". They understand the anxiety and depression that comes with MBC.

4. I see a therapist monthly and just started antidepressants.

5. I also found a couple of really good books about people who are in a long remission from stage 4. This really uplifts me when I feel hopeless.




Dx 7/2001, IDC, Right, 1cm, Stage IIIA, Grade 3, 7/13 nodes, ER+/PR+, HER2- Dx 1/2019, IDC, 1cm, Stage IV, metastasized to bone/other, ER+/PR+, HER2- (FISH) Hormonal Therapy Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Aug 27, 2019 01:16PM Moderators wrote:

We greatly appreciate your feedback. Any other suggestions?

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Aug 27, 2019 01:28PM candy-678 wrote:

To reiterate my original post-- I think mental health services SHOULD be included in standard healthcare for Stage 4 Cancer folks. Offer us counseling at a reduced cost. Include this in our MO visits. Something. I live in Rural America and we don't have Social Workers on staff with my MO. If you need mental health services, you have to seek it out yourself and pay the high cost of the sessions. And I was even told by one service I called that they don't have services for cancer folks per se. Did I need help for depression, grief, etc so they could direct me to the right person/area. Good grief.

I don't know what you plan on doing with this information, but hopefully you have a plan to really help the ladies here.


Found mets on CT for unrelated issue. I only had 2 treatments with IV chemo, then switched to hormone therapy/targeted therapy. Also using Xgeva injections for bone mets Dx 6/2017, ILC/IDC, Left, 3cm, Stage IIB, Grade 3, 0/1 nodes, ER+/PR+, HER2- Dx 9/2017, ILC/IDC, Stage IV, metastasized to bone/liver, 0/1 nodes, ER+/PR+, HER2- Targeted Therapy Ibrance (palbociclib) Hormonal Therapy Femara (letrozole), Zoladex (goserelin) Chemotherapy AC Surgery Lymph node removal: Sentinel; Mastectomy: Left
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Sep 11, 2019 02:36PM Moderators wrote:

Dear Members,

We appreciate your shared insights on this topic and we are compiling information including resources that we hope will be helpful to the community. While we are in the process of doing such we thought you might be interested in these resources:

Cancer Care provides free on-line support groups

Check out this link to join their Metastatic breast cancer group โ€“ 15 weeks led by an oncology social worker โ€“ new group starts October 1, 2019

https://www.cancercare.org/support_groups/44-metastatic_breast_cancer_patient_support_group

You also might be interested in Telephone Support Groups for those with MBC. Check out the organization SHARE and click on this link https://www.sharecancersupport.org/calendar/support-groups/ to learn more about how you can register for such groups.

The Mods

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Nov 25, 2019 05:58AM LoveLife-1 wrote:

I was on Paxil prior to my diagnosis of Stage IV as I suffered from depression my whole life; It has been 2 months since my diagnosis; I have had ct scan, bone scan; blood work; I am on Letrozole, Ibrance and anti anxiety meds; I feel like I am getting worse in my mental state; I don't feel like doing anything; I can barely get out of bed in the morning; I have a lot of support from family and friends but it is not helping my depression at all - I can't change my diagnosis - state iv breast cancer but I just want to live what like I have left and enjoy it - how can that happen if I am constantly depressed and glued to my sofa

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