psycho-oncology services

I love your idea!  I think what women want is often as unique and individual as each woman is, so I think someone to go to or be there (as someone absolutely wonderful was at both of the centers where I was treated) is the important thing ... maybe to drop hints about what's ahead, but then to listen and let a woman express her personal concerns and fears and address them on an as-need basis.  

Universally, I think one thing almost every women needs is permission to make themselves #1 for possibly the first time in their lives... to drop the caregiver role and let others help them. That's a very new way of thinking for most of us.

Christmas blessings to you ~   Deanna 

I stuggle with the looming fear of distant recurrence. That every lump, bump and pain is indication that cancer is ravaging my body. I'm in the middle of chemo, and can see the day coming when I'm done with 'active' treatment. How to go from active treatment/attack mode to longer term, live with the fear of cancer returning, and carry on a 'normal' (?) life. WTF? I have no idea how to live that life.

Yeah, family support, or somewhere to go away from family would be great. They don't understand, or care about what I go through, just as long as they aren't inconvenienced at all. My mom broke a wrist 4 days before my surgery and wanted a bedpan or potty chair and of course for me to deal with it, because her wrist was broken and she didn't want to have to use the stairs. For 3 weeks.

I totally agree with Momine.  I think that psych services that help educate medical personnell would have really helped me. 

I only have LCIS, but I had a traumatic wire insertion before excision.  The involved radiologist never asked if I was in pain.  No, I didn't complain at the time - they told me before the procedure I was 'not to move a muscle during the entire procedure'.  After the first  wire insertion I knew if I told them how painful it was I would cry, and if I cried I would move/shake, thus invalidating the procedure. A few months later I was diagnosed with a PTSD-like disorder (I had earlier trauma too.)   I wrote 2 letters complete with Pubmed references and a survey here to the radiologist, who finally replied that 'if he gave lidocaine to everyone he'd have to take the time to mix it with some sodium bicarbonate' (whatever relevance that has).  When I brought this up to my breast surgeon at a followup appointment, she said, 'Well, the wire insertion was in a different department.  If you have a better experience at a different hospital, then write the CEO.' 

I wanted someone to say, 'I'm sorry this happened to you.' and at least ask if I was in pain (my pain was at least 9/10-it was not 10/10 because I'm sure it would have been worse to have my arm torn off.)  Someone else who had the procedure called it 'barbaric'.  One poster here said her wire insertion was so awful that she didn't go to any followup mammograms for 10 years because of her fear of having that happen again - and got diagnosed with invasive breast cancer at her mammogram 10 years later when she decided she'd better follow up.

So I think this is needed not only for people who are diagnosed with breast cancer, but also for people who get benign results - so patients will be more likely to go to followup exams.

asmd ~ I'll PM you with more info'.    Deanna

I agree with LeesaAnn - I too am in treatment & am obsessed with possibility of recurrence/cancer spreading all over me, even though I had bmx, 4 AC, am getting taxol/herceptin x12 now, & will get herceptin til november 2012 & tamoxifin. Im thankful my doctors have treated aggressively & supported my decision for bmx even tho it was not necessary. But I worry that every little ache is something bad. I cannot get my head around how I will ever stop the constant worry & fear and somehow get any semblance of my old life back.

asmd, if you'd like to have us move your thread, either of these forums would be a good place:

• Advocacy
• Help Me Get Through Treatment

 Send a PM or post here, and we'd be happy to move the thread. 

Judith and the Mods

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leaf, what a terrible story! Awful!

asmd -- it seems to me that a lot of people diagnosed with cancer struggle with relationships. On BCO we see a lot of questions about who to tell and how, particularly when younger children are involved. We hear of marriages and partnerships and friendships that break up after a diagnosis, and people who are let go from their jobs. We hear from husbands, partners, parents, and children who are frightened and don't know what to do.

While the trauma of the diagnosis is certainly a big one for most people, a good many also seem to need help with relationships in one way or another.

I think that what you're talking about could also help preventing the kinds of experiences leaf had. With feedback, the offending doctors might learn more compassion. 

asmd,

I have no evidence of recurrence and will be 10 years out from tx next week.

The ongoing denial by medical practitioners and the continuing failure to provide genuine informed consent at time of diagnosis is something I think needs analysis and then full training for practitioners.

The extent to which the changes in sensuality and physical capability for vaginal intercourse occur with chemopause was stated by the oncologist in only one sentence with no further information provided: "You will probably become menopausal with treatment." That is cruelly inadequate.

In addition, I returned last year to the excellent cancer center where my surgery and my oncology consultation were done, and attended an introductory presentation for newbies. Nothing had changed. No discussion or information was presented regarding the changes that occur with chemopause. The nurse there told me my experience was "uncommon", and recommended I seek counseling with the oncology psychiatrists. I sought counseling and was told specifically that because the trauma is so great for those who are in treatment and in the year or two afterward, no counseling is available to those who are more than two years out from treatment. If they don't see patients after that 2-year period they are in effect continuing the failure to acknowledge and deal with the longer-term and late effects of treatment.

In addition, given what is already observed about hormonal importance for treatment, it makes no sense to have tumor boards composed of surgeons, radiologists, and oncologists without training and adding onco-endocrinologists to the tumor board with equal authority for treatment recommendations to that of the omnipotent oncologists on the boards.

AlaskaAngel

SheChirple, that does sound like an excellent program.

Morning asmd....I quit going to my Oncologist because she was just so in-different when I would ask her anything!  I was put on Tamoxifen....took it for 14 months, and went deaf.  I'm not the only one either on BC.org....  If she could have just "listened" to me, asking her about this, because I was terrified!  

She didn't think it was possible.... Wanted me to stay on Tamoxifen...  "not a likely side-effect"...but it was. 

I quit going to her...researched all over the Internet....found lots of information about Deafness from Tamoxifen...  I quit the pill... I lost all trust in that Oncologist...she wanted to put me on Femara...I was just to scared to try anything else.

So I just see my PC now...she believed that some things happen that no-one can for-see.   I take supplements & get those 6 month Mammograms, & an annual physical.  That's all I trust.

So, even though "permanent hearing loss" was never listed as one of the side effects of that drug, it does happen! 

If the Docs could just treat us as individuals, not just breast-cancer patients, and just "LISTEN" to us, it would put a lot of our fears to rest...

I wish you the best of luck! 

asmd, I have another thought. A fair number of women here have mentioned how surprised they've been that *they* were being asked to make all sorts of decisions about their treatments and how they felt unqualified to be making medical decisions.

I've been surprised at that reaction (it seems to me I have to make medical decisions for myself frequently!) and I suspect that the women who feel that way aren't being adequately ministered to (to use a pastoral expresion) because most doctors are probably unaware that some patients feel this way. So that's another area you might think about for your service. 

I have to admit this.  Yes.  I would feel weird if a psychiatrist came to talk to me at my center.  I'm sorry, but you asked.  I was trying so hard to keep it all together that having a routine evaluation or something by a psychiatrist would make me feel that everyone then expected me to lose my mind on top of everything else.  

When I went in for my very first chemo infusion, the phone rang.  (My phone is like the Batphone...only used for emergencies.)  Literally, just as they were about to push the chemo, my 5-year-old's school called.  He was an hour and a half away having a seizure at school.  The ambulance was on the way.  The nurses told me I could reschedule, but I told them to keep going.  My son could have seizures every week (he had had some in the past usually associated with fever, but right about the time of my dx coincidentally his increased in frequency and he's since been on medication and hasn't had another..yay).  My mom was up at our house, used the GPS to get to the hospital and was there before the ambulance.  I made my husband leave me there in Boston, and knew a friend who lived nearby would come for me and drive me home.  She did.  

They called in a social worker to see me.  I admit.  I cursed several times when this happened.  I just kept saying how absurd it was that all this would happen to me in one day.  While the social worker was really nice, I felt like I was tattled on and got an emergency psych consult or something.  Again, she was nice and later we met again a couple of times when she passed through and she said she wasn't worried about me because I vented (by cursing lol), and then got on the phone and went into "mom mode" calmly stating my son's allergies, etc.  

But the nurse who called in the social worker...to this day I feel like a total ass in front of her.  Like I lost my shit in front of her.  I KNOW!  I KNOW!  I had every right to be upset and I would never judge anyone else for being upset, but later during infusions I realized how you can hear EVERYTHING and I wondered about the people around me that day and how it must have been a bit of a scene.  It was all so embarrassing.   

I think it would work better for me, when "as needed"....I mean I didn't need much help after diagnosis, because I had a supportive family...  I mean I acted strong, for them....  I think most women need help AFTER the rough parts....because for some, it just gets harder!

It was after the diagnosis, the surgery, after radiation, THEN thinking of chemo, really upset me.  My first Oncologist thought I needed chemo....ordered the Onco test, & I scored low... 

I quit going to him....Went to my last Oncologist, she put me on Tamoxifen, took it for 14 months before I went deaf....

It was THEN I needed SOMEone that would listen.... Someone to believe that what happened was real!  Don't even know if a psychologist could have helped.   I had to figure it out for myself, and take care of it.

After the ENT, and the hearing aids, I am okay.... now.   I just want to be DONE with anymore cancer, anymore side effects .....

But I think a lot of women on BC.org, WOULD benefit from psych help!  Some women are very angry, because of it all.   They need to vent....and a lot of them are going through terrible treatments, with no family, and many problems other than cancer.... 

Maybe even you could help on here, asmd!  By offering your expertise or services to these women that are "lost".... But by helping on here, you probably wouldn't get paid.... By letting them know by Pm's that you are "here" if they just want to talk.....?