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Topic: a cruel joke: breast cancer & 'thanatophobia' (fear of death)

Forum: Breast Cancer with Another Diagnosis or Comorbidity — Meet others who have breast cancer but also have another health diagnosis/comorbidity such as diabetes, MS, bipolar disorder, HIV or AIDS, Parkinson's Disorder, schizophrenia, etc.

Posted on: Mar 23, 2019 03:49AM

elise24601 wrote:

Since I was a child I struggled with severe anxiety, triggered by the thought of getting sick, experiencing pain, and - especially - dying. It got worse as a teen and young adult. I've been in therapy since I was 15, and I take anti-depressants and anti-anxiety meds.

Three years ago I got stage 3c breast cancer at age 31. Risk of mets is high. As you might imagine, it made my mental illness much worse, to the point where I've had to double my dose of pills and am still suffering tremendously.

Today I face a potential stage IV diagnosis (hip bone pain - need scans to be sure) and my thanatophobia is maybe the worst it has ever been. Although my therapist is nice, I don't think she or anyone can possibly grasp the acute panic I feel and the impossibility of treating it, due to my current circumstances.

Is anyone else here advanced stage (or high risk) with serious anxiety or phobias relating to disease/death?


Dx 5/4/2016, IDC, Left, 4cm, Stage IIIC, Grade 3, 15/28 nodes, ER+/PR+, HER2- Surgery Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy Xeloda (capecitabine)
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Mar 23, 2019 05:41AM santabarbarian wrote:

elise,

I am so sorry you find yourself in such a scary situation. I think you have every right to be concerned and upset and of course death is a certainty for all of us and cancer DOES bring it up close. I am sorry the longstanding anxiety makes everything harder and worse.

Hopefully the hip will be fine, but I know worry can still carry you away even if the scan is clear. My suggestions may be off base (take what you want and leave the rest) but I will offer you my thoughts. I am very fortunate to be a non-worrier. I am more of a preparer... I over prepare and over study which is my way of dealing with things.

First: I want to mention neurofeedback (Neuroptimal is the system I am familiar with) which is a very mellow, easy system of auditory feedback which tracks the activity of the right brain (mirroring it's own activity) and this allows it to adjust and calm itself. Anxiety is sometimes the right brain stuck in "overreact" mode... I think it's very worth a try. I am a CASA and I had a youth I was CASA for with horrible anxiety, and this was what helped her the most, and it helped rapidly... like 10 30-minute treatments. It is effortless, your unconscious mind does everything on its own. It's like by holding up a mirror to the brain, it straightens itself out. Worth trying!

Second, I wonder if really **facing and thinking through** (preparing!-- my coping skill!) your own eventual death would possibly help. Pretend you have five years... as an exercise. How would you want to spend it? With whom? Doing what? Leaving what behind as your legacy? What would your wishes be, for your loved ones? What meaningful acts would give you the most satisfaction? What is your purpose, and how could you enact it in the next 5 years?

Then do something towards this vision each day. Write the letter to the loved one, volunteer on the cause that gives you meaning, take the hike in nature, hang out with the important people. Focus on living well and it might take the emphasis off the 'possibly dying' part.

Of course, I am NOT saying you only have 5 years, I am saying, maybe imagining this can help bring into focus things that you want to put your energy towards that are more fun/meaningful, and can help push worrying to the side.

Also, if you haven't done it, you could prepare a living will so your medical and physical wishes are honored. If you want/wouldn't want X or Y or Z, write it down. You could also talk to someone who works in hospice and figure all that out and get their advice/ counsel. You do not have to have a bad or painful death. It might help to talk to someone who deals with death every day. They might have counseling suggestions.

What about *after* death? Would taking to a minister rabbi or other spiritual counselor help? Is it the unknown that is frightening? Do you have a belief about what happens to us after death that is scaring you?

Are you a member of a group of young people dealing w cancer? That could help because I am sure many of the worries you have are shared by others and it might be comforting to know that.

All of this to say, I think it *might* remove some anxiety to that know you *have* prepared, you turned over the rock and saw what was under it... Then you can put the rock back, and use the info you got to focus on spending your time in fulfilling ways.

I have TNBC -- though it appears gone,TNBC can roar back fast and lethally (usually in 18 mos-3 years). So I have faced these same questions and made some adjustments in my life. I have talked to my family about my thoughts and wishes. I have let go of some old resentments and thought about, if I only have 3 years, how I could best make a difference re things that matter to me. I have long been pondering writing a non-fiction book and now I am writing it. That can be a legacy I leave behind if the worst happens.

I know this is easier said than done! It is hard to stop a racing mind. I am sorry you are suffering. Just some ideas that might help you put amorphous worry into more specific, life-enhancing purpose.




pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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Mar 23, 2019 06:03AM KBeee wrote:

I think santabarbarian has some great suggestions. My anxieties do not come close to yours, but every now and then I do get very anxious. What works for me is to just tell my self that I can only control what happens today. I get overwhelmed sometimes looking even a few months down the road. I have to focus on today. Cancer is not going to kill me today, so what do I want to do today? Then I do something to distract myself. Focusing on the here and now can help. If your therapist is not aware of how serious it is, please ask to see someone else.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/25/2013 Mastectomy: Left, Right Chemotherapy 9/19/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/11/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/22/2014 Reconstruction (left); Reconstruction (right) Surgery 1/28/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Surgery 2/24/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Chemotherapy 3/30/2015 AC + T (Taxol) Radiation Therapy 8/24/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Mar 23, 2019 06:51AM - edited Mar 23, 2019 06:52AM by Salamandra

Hey Elise,

So sorry you have to deal with all of this. I will say it sounds like it's time to get out the big guns for your mental health care. Does your cancer center have any psychiatrists or social workers on staff? They may have more specific expertise and/or be able to refer you to practitioners who with stronger skills and knowledge for supporting you.

Psychology Today is a great website for finding therapists. Most are happy to have a phone call with you before setting up an appointment. That can be a good way to do an initial screen for someone who feels competent for your needs. Like others mentioned, you may need more specialized care than just regular talk therapy.

My situation was different in a lot of way but I also found that my old therapist just wasn't cutting it any more. I more or less ghosted her.

I'd also say, if you have the ability, even tenuously, to pay out of pocket for this, I think it's worth it to expand your search to beyond who is covered by your insurance, if necessary. In my city, it can be very hard to find psychiatrists who take insurance at all, for example. This is really compromising your quality of life, and it is worth paying for.

I think that some of our stage IV members might be able to answer your question with more relevant personal experience. There is a thread where members who are not stage IV can ask questions on the stage IV board.

Heart

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
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Apr 3, 2019 05:39PM - edited Apr 3, 2019 05:42PM by Yndorian

Santabarbarian, your post is really amazing. I am a high risk patient because of a palpable supraclavicular node, I'm having chemo before surgery, breast tumor had a great reduccion but supraclav node is still there. I was thinking a lot about those all stuff you mentioned, I don't afraid to die but pain is my worse fear so I have been reading a lot about paliative care/hospices. Never is too soon to have a good plan into this madness...

Dx 9/24/2018, IDC, Left, 3cm, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 10/26/2018 AC + T (Taxol) Surgery 6/11/2019 Lumpectomy; Lymph node removal: Left, Underarm/Axillary Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Breast, Lymph nodes, Chest wall
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Apr 5, 2019 08:17AM wallycat wrote:

((((Elise)))))

I am a worrier. To try to find a gradation on who worries more or what they worry about is a thankless and useless job. THose of us who ruminate and fret understand your situation very well. I think even those who have not had the "death" worry end up dealing with/having it once the "C" word is used.

You are young, so understandably it can be more pronounced (the worry). As we get older, we realize that death is a part of life. For me, that was really how I was able to cope. Sure, when we're feeling great, have a decent life, the thought of death can be intrusive and unwelcome. When we come face to face with it, it is a rude and unwelcome event. Still, for me, it helped me realize that this is something we all share. Some young, some old, but in the end, it is the great equalizer. This is one event that power, money, status, etc. cannot help us escape. In some perverted way, that soothed me. I will be following in the footsteps of some great minds and contributors..Mozart, Einstein, Hawking...and me. In that way, for me, it put perspective on the experience. When I had a recent lab scare, initially, it frightened me and made me anxious...and I rethought the scenario and framed it with how I just described. It helped me.

The fact is that science is progressing and there are far more treatments and options than we have had previously. The odds are *usually* in our favor. That is comforting. It doesn't change the final outcome, however far in the future it will be. In some strange way, the fact that it is a shared experience is soothing.

I hope you live a long and healthy life. I hope you can find something and/or someone to assist with the anxiety. I know how very real it is. You are not alone.

Dx 4/07 1 month before turning 50; ILC 1.8cm, ER+/PR+, HER2 neg., Stage 1, Grade 2, 0/5 nodes. Onco score 20, Bilateral Mast., tamoxifen 3-1/2 years, arimidex-completed 4/20/2012

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