Recent dx of stage 4 - how to deal with anger/sadness and work

Anonymous

Almost exactly on my 11th anniversary of stage 1 bc dx and 3 months of many doctors telling me my symptoms were a virus, I am now stage IV. I had laryngitis starting in mid Sept but had other symptoms, all on my left side (sinus, ear, neck and finally the hoarse voice) starting in July that took me to my Gen. Prac. 3 or 4 times, called my oncology office to be told to see my GP, had an oncology appt with clear mammogram on 10/02 and the onc. PA said my issues were viral, and saw an ENT 9/2 for intense sinus pressure with no congestion who told me to see my dentist as I was grinding my teeth (not true!) and finally the 2nd ENT visit was for the laryngitis. She scoped me and said my vocal cord is paralyzed, can be viral but can be due to a nerve issue and ordered a CT of my neck. I have extensive lymph node cancer in my chest and neck and a large collection of these have put pressure on my laryngeal nerve, paralzying the left vocal cord.

Up until the end of July, I felt fantastic. I also felt fantastic when I was dx as stage 1 in 2008. However, in the end of July I certainly had so many symptoms on my left side that I thought I had a brain tumor. My GP and the onc PA who I saw on 10/02 both kind of scoffed when I told them that. I see a PA because my oncologist retired in 2015 and I was transferred to the Wellness Clinic as my risk of recurrence was low(this is at a top rated Cancer treatment and research center). I go in twice a year and all mammograms and breast MRI's and blood work have been great.

I am 55. Happily married with two young adult kids (one with aspergers). I have a thriving, succesesful real estate career in a small community, I work a lot because my husband and I are diligently working towards retirement and have enjoyed dreaming about how we will spend our time. CUE BITTER SOBBING from both of us.

I AM NOT READY to be done. I do think that the treatment will work for awhile, which is great. The neck to pelvis CT Scan and the Bone Scan with tracer both didn't show any other areas of concern, I have a brain MRI and a PET scan tomorrow. Will start Fulvestrant on Friday and Ibrance as soon as my insurance approves. (cancer is ER/PR positive but the HER2 info not avail. yet - assumes its HER2 neg as my first one was , but we will find out thurs.

I don't feel like sharing this news with many people. Of course my family and a few close friends know as well as my immediate boss, and my work business partner. I'm not having surgery or chemo so won't have obvious reasons to share and to be honest, I feel like people said the weirdest things to me when I was stage 1 (and did chemo and radiation plus 7 years of femara). I ended up having to console them or try to make them feel better OR try to explain the many facets of Breast Cancer and I am not up for it.

Is it weird if I don't tell work colleagues ? These are not friends, but acquaintances in the same industry. I don't want them to feel like I can't work, or look at me with sadness. I guess I am looking for advice for those of you that have been there, did you tell everyone or just those closest to you.

Re-reading this, it sounds so petty. Does it matter? I think really it will depend on how well I tolerate my new meds, right ? I feel so much like I am out to sea with no paddle.

I was a stay at home mom for 14 years and for our PLAN, I need to work for the income but since I am bitterly considering the fact that I won't really have much time to be "retired", maybe I should enjoy life and not work so much. How do we decide ? It seems like every basic thought I have turns in to a huge WHAT IF. HOW LONG DO I HAVE. and STOP IT - TAKE IT ONE STEP AT A TIME.

My final note is that I am really struggling with HOW did this happen and why did none of my doctors listen to my many pleas for help before I lost my voice. All my life I have been a great advocate for myself, my family and clients. I rarely go to the doctor so it's not like a am a hypochondriac. I am just devastated. I was patronized and they were all dismissive and here I am. I need to let that part go, and most likely it would have been still pretty extensive lymph node involvement in early august so really, not that different - except I could have started treatment earlier.

Thanks for reading/listening. Any advice is appreciated:)

Anotherone

hello aprilgirl

I hear your thoughts and can so relate to them...

Shock, hurt , anger, tears , bitterness, fear, confusion with planning, grief.

I think you are very right in thinking who you tell and not doing it widely. Why would you want to? Mind , even if you wanted to I would have said wait a bit as once it is said it can not be unsaid.

They wisely day on these boards not to make any major decisions for a year after diagnosis. Of course it is difficult to figure out re work and money and time and priorities, don't expect to know it here and now , give yourself time..

It's bad. Sometimes it can be worse or better... Even in this very bad position of stage 4 cancer there are divisions that are as far apart as day and night. One can be fully functioning with minimal to no side effects and long term stable or NED or deteriorating steadily with severe limitations and no other options left and full of angst.

Good luck with your treatment. I found short guided meditation utube videos helpful in the middle of this immense stress.

Anonymous

Hey aprilgirl - just another one to chime in about the feelings you are having and know that you aren't alone. I was diagnosed de novo with bone mets about 6 weeks ago and am only just now starting to get on top of my emotions. Some days I still can't believe it - I had always been healthy and rarely went to the doctor, rarely got ill, and when it really came down to it, my damn lymph nodes packed up and took a vacation. I get angry at myself too for not taking better care, for not going to get that mammogram when I turned 40 (like they say in the US to do), even though they don't start scanning here (UK) before 50. But with no family history and no risk really other than dense tissue (and I had even had a reduction 20 years ago that took a bunch of it out), I just put it to the back of my mind.

I didn't tell work for the longest time as my treatment plan kept changing as the scans came back. I just told my immediate line manager and even then I didn't get into stage, only noted that the treatment will involve pill-based therapy and I won't look any different,etc. Most people don't know/understand what treatment options there are, and I don't think its my place to, you know, educate them Unfortunately I am dealing with some issues with mets in my sacrum which are impacting my ability to walk, so its a convenient excuse for everyone else that I am WFH right now. But ultimately I don't want people to know because I don't want to be treated differently or excused or pitied. I am still me, just with a really ugly passenger in the back seat that only I can see.

I understand the planning dilemma - how can you plan when you don't know the impact of the side effects? Or treatment options and if they work? Do you work or not work? Its as if life wasn't uncertain enough another layer of uncertainty was added. I haven't figured it out yet, but I suspect some other, longer metsters will be along shortly to chip in.

For me, for right now while I wait for the 'real meds' to start next week (also Ibrance/Letrosole - Im only 42 so they have to shut down my estrogen first) its been about continuing daily life, going to work (even if I dislike it) and working through these feelings and accepting/mourning. Lately some vague ideas have started to form about what I think I want the near term future to include, but I don't force them, just letting them come to the surface. Id also like to get into some therapy when I am finally mobile again, because I think it is good to talk with a third party and get some coping mechanisms. I've also been trying to take more, longer breaks from cancer information/interaction to help keep it off the mind as much (sometimes it works).

Do come join us on the various Stage IV threads when you are ready (believe me, it took a week before I could look at the threads without crying) - there are threads for the drugs or mets places or just general chatting too.

Piggy99

Aprilgirl1, everything you feel is perfectly normal. Being diagnosed with Stage IV cancer is in many ways like a death - the death of the future you envisioned for yourself and your family, the death of your carefree days when your mind was allowed to peacefully and blissfully plan for the future without any nagging voices in the back seat. And it's normal to mourn and to be angry at the death of all those things.

But it's not the death of you - not today, not tomorrow, not next month, not even next year. You seem to know that on a "mind" level - as the treatment starts working, you will start believing it on a "heart" level. It will take a while, but you will get to that place. Maybe not to the carefree place before cancer, but to a place where you feel that planning for ten years from now is not a complete waste of time.

I think the "one year" advice is a good one, and it especially applies to those, like you, who are in good shape at diagnosis and are looking at a future measured in years, not in months. In my own situation, I took it to mean that for the first year I would make the same decisions that I would have made if I didn't have stage IV cancer. I was in a somewhat similar situation to yours two years ago when I was diagnosed de novo at 42. I had just changed to a new career a year before, taking a substantial pay cut for more rewarding work. I had applied to law school and planned to attend for three years, work as an attorney until my then 6-year old daughter left for college, and then enjoy an early retirement with my husband.

My Harvard Law School acceptance letter came two months after my PET/CT results, and I cried for days over the death of my dream and the wasting of an amazing opportunity. And then I read stories of hope on this site, I talked to my husband, my boss and my doctor. And I wrote back to the admissions office and said I would be honored to attend in the fall. In my mind, I added "unless my scans look bad". But they looked great, and I went, and I can't imagine a better way to have spent the last two years than planning for and going to school once more. Caveat: I'm a freak and loved going to school since I was six - I'm not saying that everyone should do that. Like you, I felt I WASN'T READY TO BE DONE, and I'm glad I didn't let the early darkness decide that I WAS done.

I have no guarantees that my good fortune will hold long enough to finish school. Even fewer guarantees that it will hold long enough to get a few years of practice as an attorney, to see my daughter leave for college, to retire... But at this time, my body is still cooperating and I'm doing what I want to do. What I would have done if I hadn't been sick. And I know I won't regret it no matter how the future turns out. In your heart, you probably know what YOU WANT TO DO. Unless it's recklessly endangering you or your family, I'd say do it.

As for telling people, the people in my social circle know (neighbors, parents of my daughter's friends). In retrospect, I wish I had been more selective, because it turns out some people are willing to care only if it involves short term provision of casseroles to the gaunt and bald chemo patient. I got a comment along the lines "All I was told was that you had cancer, and now you're going to law school?" as if I had somehow cheated them into compassion by not immediately declining toward death.

I also told my boss, HR, my secretary and my closest work colleagues, but the majority of people at work don't know. None of my law school classmates do. It's not that I desperately want to keep it secret, it just didn't seem necessary to tell them. And like you, I wanted to feel normal for as long as I could. I wanted to be "the wise old classmate with a husband and kid" not "the poor classmate with cancer" .

And last - if you can, and this is easier said than done, stop thinking about how you got here. It doesn't make any difference in what lies ahead, and the anger will just poison your precious time. As you said, you would have been stage IV even if you were diagnosed back in August. And it looks like it's not spread beyond the lymph nodes, so the additional damage is more a matter of quantity than quality, so early treatment would probably not have made a big difference.

I apologize if this is long and rambling - your words really resonated with me, and I just wanted to let you know you're not alone. Best of luck, and may we all be here for many years to come.

Moomala

Aprilgirl1 I sooooo hear you and understand. I'm eight months into this and have had quite a ride in 2019. I had back problems starting last year and my doc kept telling me it was arthritis for months. Well...it wasn't even cancer that was hurting - it was that cancer was nibbling on my bones and they were crumbling, causing bulging discs and pinched nerves. MRI finally started showing a much more serious picture of mets in most of my skeleton and in my lungs. Then bone scans and cat scans and on it went.

I'm 63, DH and I are both self-employed and had plans to start cutting back workload as we got toward 70 and start doing some traveling. Bitter Sobs too. So unfair. My cancer is not yet stablized, I'm on new treatment and my back/hip is seriously disrupting any travel plans I might have had for this year and probably next.

I've told all of my clients that I have gotten a Stage 4 diagnosis so that they can be a little more understanding if I have to cancel for tests and stuff. I'm a piano teacher and have very loyal, dedicated clientele so I don't have to worry about my diagnosis giving anyone opportunities to take my clients. I have, however, cut my studio schedule in half from last year. Financially this is NOT great however for my peace of mind it has been wonderful.

A couple of little snippets of advice I've received as I've gone through this. Give yourself a year. You need to process, think about decisions you must make and get your head around what's happened. I can feel myself, at 8 months, coming out of the fog of that initial grief and getting busier at making decisions - some of which are incredibly difficult and some of which are things I'm looking forward to.

Next, your cancer is your cancer and yours alone. Everyone's cancer and situation is a hundred percent unique. So although the boards here are very VERY helpful, remember that the person writing is a different person with their own unique cancer.

The boards here are fantastic. I've gotten help with grief here, and medication side effect possibilities. When Ibrance failed for me at six months, I was devastated and the people on this board were fantastic in understanding how disappointed and devastated I was over what I thought was a wonder drug. It didn't work for me because my cancer is unique from theirs but I found myself in a state of disappointment and jealousy that took weeks to shake. I think I cried daily for two weeks and had thought I was over all that crying. Let crying come and let anger come whenever it comes. I always find joy again.

But! once you've gotten what you need from the boards here, take your time and energy back to your life. That's where everything that matters is. It's hard to read some of these threads at first so read what you want and ignore the rest until you are ready and never forget that your life is not on these boards. I spend a little time here a few times a day but I also have to take breaks. I'm embarking on more regular and longer breaks such as full weekends.

Here for you! I'm sad you're here but I'm glad you reached out.

Anonymous

Thank you all for your replies! It does make me feel less crazy and less alone. I love the advice to wait a year, or at least wait until I see if the treatment is tolerable. It really does help to know that my ups and and downs will settle down as I get used to this. I will follow my gut and not really announce what I am dealing with - really, only certain people are on a need to know basis.

I so appreciate this Board and all the treatment info/advice/amazing people who post and help. I learned so much in 2008 and knew I would find support, understanding and BRILLIANT advisors who are also dealing with the same disease.

XOXO

DivineMrsM

April, your feelings and concerns, all of them, are valid. Do not apologize for having them; do not minimize them. Anger, sadness, bitterness, fear, anxiety, the whole everything. Feel it. Don’t judge yourself for the feelings.

The part of consoling others about your diagnosis: yep, it happens and it’s weird. So, It’s okay to keep your health matters private. I told very few people, none of my coworkers, and am very glad I did it that way.

It’s okay to slow down your work pace a bit while you come to terms with the new normal of your life. Make those adjustments knowing you can pick the pace back up if and when you feel like it. If anyone questions your intentions, smile and have some already-thought-out vague replies like, “Just learning to balance it all.”

I questioned what the hell happened, how did I get here, too. After awhile, I stopped trying to figure it out. But it’s normal to have those thoughts.

See this as living with metastatic breast cancer, not dying from it. In time, you will adjust and create a revised game plan for you and your husband. It’s not over. I was diagnosed stage iv from the start almost nine years ago. Some of my most wonderful of life’s moments have happened since then, not because of mbc but in spite of it.

Best wishes to you.

vlnrph

My metastases were found in 2018. I'm doing OK now so wanted to point out that, should you have enough work credits in the US and wish to quit your job, your on line Social Security Disability application will be fast tracked. Approval can be expected within a couple of weeks under the Compassionate Allowance program.

There is a five month waiting period until the first check hits your bank account but it will be for the amount you would have received at full retirement age. After two years you qualify for Medicare.

Perhaps this information will help in planning to cover future medical expenses and/or travel, law school tuition, mortgage, whatever!

Frap

Curious for those who were able to claim early SSDI as a MBC candidate, did you need your Dr's approval or input? My Dr says I'm perfectly fine working even though she has no clue the mental stress of my job, not to mention battling the side effects. Wondering if her input will disqualify my application. Certainly appreciate any input and many blessing to all who are suffering through the many SE of these meds.

Anonymous

hi Frap - there is a thread about early ssdi - I will see if I can find it for you ! I have read on that thread that some had no issues getting approved with mbc as an automatic approval , but one person was denied this year. I will tell you that I am still working full time and so far have had minimal side effect on my meds . I started this thread when I was just dx and devastated . I am relieved that this past year has been good. Don't get me wrong , I'm still devastated that I am stage 4 but I have less fear and a bit more hope . I really appreciate everyone who replied to me and gave me support