psycho-oncology services

dlb823

asmd ~ I wish you could see how smoothly psychological care is integrated into overall care @ UCLA.  It starts with your very first appointment where a psychologist rotates in to see you, right along with a breast surgeon, oncologist & rad onc.  Questions like, "How are you doing with this?," and "What kind of support do you have around you?," (asked of both me and my DH) fill in really important gaps for your docs to get a much better understanding of who you are and how you're handling or going to handle what's ahead.  Support groups are offered (they run several, including a separate one for metastatic bc), but you're also assured that there's no right or wrong way to react to a bc dx, and if a support group doesn't appeal to you, that's absolutely fine. You're encouraged to talk to a professional counselor if you feel the need -- but also to be sure that it's someone who is very familiar with and really understands bc -- that it's not the time to be trying to explain to a general psychologist why something about what you're going through is upsetting you -- that they won't truly understand the terminology or the implications of your dx (like finding out you're Her2+ or triple negative, or that your margins weren't clear, for example) the way a psychologist who deals with bc all the time will. Then, at subsequent follow up appts, a psychologist just pops in and asks how you're doing and if you have any concerns -- totally open ended.  And if you do, they offer meaningful suggestions.  For example, when I shared my concern about how I would deal with worrying that every new ache & pain was a recurrence, the very wise psychologist told me that what works for many women is to set a time limit -- and she suggested that 3 weeks is good -- during which time I would let any new ache or pain run its course, because most will go away within that time.  Then, if it hasn't, I was to call and they would check it out.  It was such a simple "solution," but it took away so much of the out of control feeling I had about the situation.  

When it's done right, there's absolutely no stigma or discomfort or anything negative about it.  In fact, it's totally comforting to know that the stress of what you're going through is acknowledged, and there are professionals there who understand it better than you do and are there to help coach and ease you through it.     Deanna 

manekineko

I do not have supportive family. I have some friends. I had total of 7 surgeries including 2 mastectomies due to recurrence and so on. My biggest worry was not being operated on but who is going to pick me up for this coming surgery. Also I picked my oncologist because his practice was very close to my house thinking about the time I become too weak to go. My original Oncotype DX was 16, I declined chemo because when I looked into my oncologist's Chemo room almost everyone had someone with them and I will be alone. I felt very lucky that I had choice of not getting chemo because of that reason.  I tried cancer support group but quit going there because almost everyone has husband with them or mother, sister etc. just made me more miserable. I took up another job on top of my regular one because it acts like untidepressant to me.

PinkShirtNow

I think the toughest thing for me was that I had no clue what help I needed.  I felt like I was thrown into a sea of decisions that I was not qualified to make.  I think that I would have been receptive to seeing a psychiatrist if it were offered as part of the normal process of treatment and screening.  I had a nurse navigator who was helpful and took me aside and asked me if I was having trouble sleeping at night due to anxiety.  I almost felt like that was a dumb question because of course anxiety was keeping me up at night.  I just didn't know what to do about it.  She got me a prescription for Ativan to take at night and that helped me.  I am grateful to her for not letting me fall through the cracks.  I think that many of us fall through the cracks because we try to put on a brave face and minimize our emotional symptoms.  Having a psychiatrist be just a normal part of the treatment team would probably help those of us who don't really want to admit that we might not be strong enough to deal with the stress of our diagnosis and treatment. 

Momine

Deanna, that sounds realy good and is close to what I imagined as a way that woud work well.

Thatgirl

I think women with BC need a real life BC.org. This site is a life saver but I would love to have the Dr./patient confidentiality coupled with the freedom to talk about any and everything without being judged over coffee.

Thatgirl

I too think a common desire from any patient would be to have someone working on their behalf. It feels like everyone in the medical field is doing what they think will be fit THEM the most. They tell you just enough or not enough to cover their butts.

Ang7

Wow~

When I first started searching for a doctor I filled out forms that asked if I was depressed or feeling great sadness.  Neither doctor that I spoke to first even asked me about my answers to these questions. 

After I found the doctor that I clicked with at a major University Hospital, I was given a nurse that called me and spoke with me a couple dozen times.  She called the day before my mastectomy, I called her the day I was feeling like running my car into a tree.  She was knowledgeable in how my children might feel etc.  I really feel like this helped me greatly throughout my treatment.  She has called me in the past year to see how I am doing.  I am not sure of her title but I could find out.  She was an angel.

asmd

thanks for all your comments. dlb-UCLA sounds wonderful. Did they have your fill out formal screening to check on your mood/anxiety or ask you personally? Hasn't Donna Karan become involved in their cancer services?

The more I hear from all of you, the more it helps me clarify my vision-which I will then have to convince hosp admin is in their best interests. I think screening for distress should happen after the diagnosis, and be a part of the package, normalizing it. At the same time, do it in a personal way, not just a numbered scale. Getting cancer is like going to war-what other disease evokes so many images of fighting, and courage? Only there's no basic training for cancer. So early screeing becomes an offer of support for those who want it, and for those who are at higher risk, we can intervene with community services, pastoral care, problem solving skills training, or psychiatric help(meds) or  therapy.

I even thought about proposing that I, or another member of the team, attends tumor board. So instead of surgeons, pathologists and onc looking at slides and coming up with treatment plan based on pathology, a treatment plan becomes more about the woman with the disease, not just the cells on the screen. 

Manekineko- I'm so sorry you don't have a supportive family. There should be community sources of support, you could find out about them thru am ca society and also from this site, on the home page.

AlaskaAngel

asmd,

Given that so much of treatment is done for breast cancer to subdue (if not annihilate) the hormonal basis for breast cancer, we are long overdue for participation on the tumor board by specialists who are familiar with the  deliberately downplayed "side" effects of treatment beyond just reducing cancer. When the only specialists attending are doctors who discuss surgery, oncology, and radiation, the focus is on each one of those specialties without any required clear support for the emotional changes brought about by those modalities.

I would have appreciated having both a psychiatrist on my tumor board as well as an endocrinologist, particularly now that adjuvant treatment for early stage bc is recommended for such a broad group of people, most of whom would be fine without anything but surgery.

The effects of treatment are generally perceived by breast cancer patients as being "as bad as they are going to get" by two years out from treatment, but that is hardly an accurate perception.  We don't yet have a lot of information about such toxic treatment for such a broad group of patients in terms of what they go through as the years go by, since treatments such as chemotherapy, radiation and hormonal therapies continue to affect patients more and more over time after they have been completed.

I read post after post by bc patients within the first few years after completing treatment while in their 30's, 40's and 50's, telling how they feel it was difficult but "do-able", and that they "recovered" their energy and sexuality.

Having been diagnosed and treated at age 51 some 10 years ago, I have found that the effects worsen steadily and there is little or no support for that. Those effects are always blamed on aging. I would have appreciated knowing more about the endocrine basis and the psychological basis for long-term effects when trying to make the decisions about treatment as an early stage HR positive patient. But there was no one who had any concern about those aspects who sat on my tumor board.

AlaskaAngel

dragonfly1

Asmd I think it's clear that we could use the presence of a Psychiatrist on our treatment teams for so many reasons. I'm a hospital social worker (inpatient med/ER) and I previously worked on Inpatient Psychiatry for many years. There is a lot to be said for family education about a serious illness. Not one person explained to my husband and I the overall impact that BC and the treatment would likely have on our lives. That would have been a very good start. The focus was so narrow-medical and medicine with little regard for my emotional state or other psychosocial issues such as work, sex, relationships, etc.

Even with my background and training I struggled to get a grip on the anger and grief I was feeling in the beginning. It was all happening too fast and my coping reserve was completely gone because I was physically wiped out. I could have used a crash course in the mental health issues and symptoms associated with a BC diagnosis-something to normalize what can happen. I didn't know that I my mind could go to such dark places during chemo or that I would have frequent crying spells. My MO and nurses never asked about my emotional state. This website was my lifeline and helped me process what was happening and find the relevant information I needed.

I will say that my BS and RO have been wonderful but my MO is the worst and I'm planning to soon change that-I didn't previously have the energy to fight that battle. I sure didn't need additional emotional strain caused by my MO. I haven't shared this before but here are just a few examples of the past year with my MO. Shortly after completing chemo I asked her what my risk of recurrence would be to which she replied "we'd like to think that your cancer was gone at the point of surgery and therefore you've done all of this (chemo/herceptin) for nothing". I also got up my nerve in the same meeting to bring up the fact that intercourse is now nearly impossible due to pain...absolutely no empathy much less solution from her. Fast forward several months and I'm at an appt with an Ortho Dr. for frozen shoulder and tendonitis in my right hip. Ortho calls MO to ask if my treatment could be causing these multiple joint/tendon problems. Ortho walks back into the exam room and informs me that the MO does not think Herceptin is to blame but maybe Tamoxifen and by the way "she doesn't think you have BC anyway" (exact words). I assume she meant "anymore" but I have to wonder why she felt the need to say it. There's more but I won't go on-I've lost all respect and have ended up spending the year feeling like my MO could care less. It's actually been hurtful. Thanks for letting me share that. My real point is that in this emotional storm I probably could have benefited from having a Psychiatrist on my team-maybe I would have sought them out for support instead of muddling through.

As others have said, I think that a particularly crucial time is the end of treatment. I'm nearing that time now with 2 more Herceptin infusions and I find my anxiety increasing again with all the fear about recurrence. I think if someone said to me, "this can be a very difficult time because...etc (again normalizing things) and we'd like you to meet with our team Psychiatrist to discuss this transition..." I think I'd be open to it now. I don't know that I would have been open to it at the time of diagnosis or during active treatment to be honest.

I wish you success in your planning. Happy New Year!

Ang7

"I didn't know that my mind could go to such dark places during chemo or that I would have frequent crying spells." 

dragonfly1- you took the words right out of my mouth.  I so agree with everything you said.

asmd

If it helps, ending treatment for me was initially a high-that lasted few days, then-very dark place. Everyone around me was happy-my MO, my family-"you're done, it's over". For me,  an identity crisis. I no longer looked like myself, no energy, couldn't string a sentence together, felt confused. I had been the most physical person, exercising, riding my horse, hiking and now I could barely get up the stairs. Sleeping 12 hrs and still awakened unrefreshed, hated going to work.  I had a busy, thriving psychopharmacology practice, but I didn't take new pts for 7 mos, and had to drop 1/3 of my practice when I got sick- I knew I couldn't take care of them.  I came back to a financially devastated business.Then I found out I had a rare genetic mutation, and I remember after seeing the genetic oncologist in Boston, my husband was sleeping and I was standing in front of our hotel window, looking out, sobbing and feeling doomed, and worse, what if I passed it on to my daughters? Lucky for him he didn't sleep through it...The lowest point.

Looking back on it now, it was like a delayed stress reaction; we all have to hold it together during treatment. Falling apart isn't an option.I hated being called a survivor-survival implying it's all over- I had to make peace with the uncertainty.

The depression lasted about 3 mos, and I slowly began to feel more like myself. It didn't end until after the contralat mx 5 wks ago.

Here's the good news. Since then, it's been a transformative time. I decided to do the psyco-onc project. I feel like I'm more patient and somehow, a better person than when I started out.  I feel really good, not physically back yet, but getting there.

I can get dark and sad, but it doesn't linger. Mostly, I'm happy and life feels more meaningful. Sometimes it really is darkest right before the dawn...

lulubee

asmd, bless you for applying your expertise in this way.  There is a huge need here and I don't think anyone really knows how to fill it, but way to go for trying.  You might be just the one to come up with something helpful.

Exactly three months after my final reconstruction surgery, my hair started falling out like crazy. I lost about 1/3 of my hair within a few weeks. My response to this felt exaggerated to me even then -- every time I scooped up hair off the bathroom floor or picked a strand off my sleeve, the invisible, wild panic I felt was yet another identity shock to me: "For heaven's sake, I've had my breasts removed and held it together only to freak out now over my hair falling out??"  SO not me.  And there was this jarring disconnect -- how could I appear so quiet and nonchalant on the outside while my insides careened out of control?  It was like insides were jammed in high gear but my outsides were lugging in slow motion.  I bit my tongue a lot for the sake of others, and held a lot inside.

It was something different every day for awhile. I would go to my book group meeting that I used to capably help lead and I would feel mute -- I had no idea what to say about anything.  One day I couldn't choose a paint color for my bathroom because I wasn't even sure what colors I liked anymore, and I started crying and couldn't stop.  My teenage daughter lost it with me, grabbed the fandeck and quickly chose a color for the paint contractor. (I hate the color in that bathroom still.)  I remember feeling stuck in jangly place, unable to calm down, and oddly incapable of making a decision.  This, from a woman who had spent five years overseeing the renovation of the rest of the house and calmly loving every minute of it.  

After consulting my PCP and my onc to no avail, it was my gynecologist who finally fingered PTSD. She told me it's a very common occurrence among women who have recently finished BC treatment. But from there, I was on my own to figure out what to do about it. Learning about PTSD and figuring out how to navigate it consumed my life for several months.  I am so much better now; even though I am now dealing with mets and my reality is actually worse than it was back then, I am navigating like a zen master compared to the way I handled the aftermath of initial diagnosis four years ago.  However, I have had two bad flares of PTSD since that first one, both brought on by stressful situations with my daughter. Both times I could feel my adrenaline ratcheting up unchecked, and then later my hair fell out like crazy for awhile. 

I tend to expect all BC patients to have PTSD after all we go through.  We've had strangers touch us all over, and calmly poke stinging needles and boring wires in us. We've had the most beautiful parts of our bodies cut off in our sleep and woken up in searing pain, some of which fades away and some which is always there somewhere, never too far away. We know things women should never have to know. When people patted me on the back for being so brave and courageous in the face of all of that, so often I wanted to just say "I'm not brave; it was either get beaten to a pulp by a small army of strangers in white coats, or die."

Like a lot of women here, I've had to work mighty hard for the past 4.5 years for every day I've had positive momentum in my spirit.  Yes, I would have loved some help.  But the help my oncologist offers is always anti-depressants, and I don't feel depressed, exactly. I feel more repressed or maybe suppressed than DEpressed.

I just feel like I've lived through the front wall of a hurricane, and the back wall is coming.

What I find lacking now in my own area is a support group for Stage IV BC overseen by a mental health professional.  There are general BC support groups locally, but I am not interested in scaring the daylights out of women with early stage disease, nor do I expect them to know how to support someone who is where I am now.  I've been where they are, but that ship has sailed. So I just come to the Stage IV forums here for company and support.

I think it would be a marvellous boon to have a psychiatrist or two participating in the forums, so please stay around!

Chevyboy

To the beautiful, women on here that have gone through sooo much:....Your honesty and integrity on this link is amazing.  How you can "handle" all of these problems, without any real back-up from your cancer-team is amazing.  You just go on, struggling along, trying to do the best you can, with what little you can figure out!

I'm so proud to be among  this group of women...  And yes, lulube, these Daughters of ours can knock us down to the breaking point sometimes.  It's like they think WE are their Daughters, and can be-little us & tromp all over our feelings, just because they can.... Because we can't or won't "fight back."  It is so dissapointing, to us, & makes us feel even more helpless.

PTSD sounds so familiar!  Yes, I believe that happens to us whenever we cannot pick ourselves up off the floor!  Something, or someones beats us down to our breaking point, and it's up to us to try & get back up to our knees, then our feet, expecting the "other shoe to drop."

If only we had "someone" like you asmd.....to be there for us when we are at our darkest...To answer the phone in the middle of the night, when we are "alone," and sure we can't take it anymore.

It would be like the service for "battered women"....Where you can call anytime, and someone is always there to talk you through your tears and your worst fears.  Just someone on "your side" that will listen, and maybe help you make your decisions... It would be in-valuable I think.

Yes, asmd...please stay with us....You are someone who validates our feelings.

dlb823

So much great information and excellent ideas here, including Chevyboy's absolutely brilliant idea for some sort of National (?) Hotline!  (I might personally be willing to work on that if anyone else would be interested.)

asmd, in thinking about you, I also remembered a program that's being done in the NYC area that a friend of mine on the "Motivation" thread attends.  Here's a link: http://youcanthrive.org/   It's not the in-hospital counseling you have in mind, but it includes elements of coaching & advocacy, and I thought it might be worth knowing about as you brain storm what you want to do.     Deanna

Megadotz

Deanna,

There are at least two hotlines in the US  that I know of:

Cancercare.org has a hotline with oncology  social workers answering the calls: 

 800-813-HOPE (4673)

Y-me.org has a hotline for breast cancer with trained on-call peer counselors:

1-800-221-2141

I hope this helps.

Meg

dlb823

Thanks, Meg.  I had no idea they existed.  I guess survivor family/friends and then BCO always filled that need for me.  Did you ever call either one?  I'm just curious how helpful they were.     Deanna

Galsal

doesn't that sound like just the ticket for others going through this or cancer of any type!

asmd, your comment about basic training is too right.  i'm an army veteran of 15 years service.

Megadotz

Deanna,  I did't call either one, but was very impressed with one of cancercare.org's  LCWs who facilitated an in person support group I was in for women transitioning from active care.

 I looked at the  information for y-me.org's on call peer counselors and it looked pretty solid.

Meg 

Jennt28

My chemo team includes a psych-onc. You don't have to use her if you don't want, but I chose to use the referral and am very glad I did because over this last week I had hit a very dark place in terms of anxiety and I was able to meet with her today and sob my heart out.



She listened to my fears and faxed a letter through to my PCP who I saw this afternoon. He has prescribed a short-term anxiety med to get me through to my port instal next Wednesday and my first chemo next Thursday. She's even diarised to come down and be with me at the beginning of my first session next week.



I think this service is excellent and a good psych-onc should be part of all oncology teams... No stigma fear here. Everyone just accepts that innately normal people can be overwhelmed in our position :-)

Chevyboy

Thanks Deanna!    I know the hot-line for abused women is not the same, as the one for women with cancer, but they would kind of serve the same purpose.  The hot-line was always available, day or night, with a live woman to talk to....about anything! 

Sometimes when your whole world has come to a screeching stop, and falling down on top of you, & there is no-one to talk to, these women are there to listen, and comfort, and guide you as what to do next.... Friends or family, weren't always there, & sometimes they were the problem!   Just running away didn't help...if even from ourselves.

I'm glad to know that those hot-lines are available!  Maybe they could be incorporated into this forum?  Somewhere?  Or maybe by you asmd?

Sorry Jenn for what you are going through.  I sat through some classes once, listening to women who were in much worse shape than I, and I just couldn't stop crying.....  Our hearts and our heads just don't work together, and we need someone in-between to put us back together again.

Take good care my friends.....

vivirasselena

it's so interesting to me how the word "stigma" is still associated with psych services.

My goodness, if anyone needs and DESERVES psych support, it's us.

As a therapist myself, I await the day when we treat our emotional needs with as much respect as we do our physical ones.

Trauma is trauma......

love to all

michele

1vamom

I very literally begged my first oncologist (thru the nurse, as the Dr. was always too busy, or running too late to see me) to PLEASE find me someone to talk to or someone to continue my Rx for ativan which the onco had prescribed for a month or so.  They both refused, and told me to take my "mental health issues" elsewhere, but wouldn't tell me where.  So. I went it alone.

I have found that very few of any of the many doctors i have now been acquainted with care about your mental/emotional state, and I have yet to have any ask me how I'm doing in any way other than physically.  In fact, all seem even uncomfortable for me to bring up that i might not be very happy.  That seems to be treated as a given, but not on the plan to fix. 

Like it was just silly of me to be upset over losing a breast that the oncologist had said it would be no problem to save, going thru chemo, losing my hair, dealing with a crappy relationship with a man who still doesn't care, and trying to raise my kids, essentially alone, without work, or money, or financial or emotional support of any kind.

I still bug my primary, my new oncologist, whomever will listen and write me an Rx for a little sanity, as I see it, but have no place to go to talk, or to not feel as if I have to beg for drugs to feel better.  I bungle through as best I can, feeling that I deserve more...

Ang7

Hey 1vamom~

From another vamom~

If you ever need to vent feel free to send it my way...

It helps me so to talk with those who understand.

Hugs to you.

Linda-n3

I agree that for many (if not most) women need lots of support AFTER they are through treatment. That's when the rest of the world thinks you should get back to "normal" and everything is "done."  Not so true - and difficult to communicate that without sounding like a whiner.

Also, I have experienced significant distress and anxiety due to poor communications, despite being treated in "one of the best academic medical institutions" in the country, where they have "a team" to "meet all your breast care needs" - but somehow, that doesn't seem to include "all your patient care needs."

asmd, I am sending PM.