Re: I need advice on Bone Scans

October 25, 2002

i would get a new doctor, i would want to know even just for peace of

mind..............

healing hugs and prayers

carol from michigan

October 25, 2002

Dear Dianne,

Yeah I used to ache, for 3 years after chemo--but also had a prophylactic

oophorectomy at the same time (I'm BRCA2 positive), but when I developed really

severe and debilitating fatigue, and all my lab tests were normal and the

fatigue clinic at MD Cancer Center could find no reason for my fatigue

I finally decided that I needed to try low dose estrogen. I'm on a really

really tiny dose (and please I would NEVER advocate this for anyone else) and

since I've been on it (since January) my joint pain and fatigue both resolved.

Go figure. Please know I agonized over this decision, and although it is what I

decided for me, my doctors make sure I understand that there could be risk

involved even on the dose that I'm on.

Ok, hope I didn't open a can of worms here.

Hugs,

Sue

I need advice on Bone Scans

My wife had a 1.1cm with 2 nodes positive and she had a mastectomy.

I was talking to a lady who had a similar incident and is about 10-20

yrs older then my wife but she lives in Arizona. She told me that

her doctor makes her get a yearly bone scan.

I approached my wife's oncologist about the bone scan the other day

and he said that it is not worth doing a bone scan after the chemo.

He doesn't feel it is beneficial knowing whether you have cancer in

the bone two months earlier then when you catch it. He quoted all

the studies on bone scans and cancer. He said it is up to the doctor

whether to do it or not. Some do it and some don't. I'd like to

know what everyone else has been doing. We have been done with chemo

for 1 yr now.

Thanks

Tony

October 25, 2002

Dear Sue,

Oh really! 3 years after Chemo. What stage Breast Cancer were you Sue? Oh so

many questions, thankyou for answering me, and don't answer the questions you

feel uncomfortable about. I had a hysterectomy 15 years back, and was under

Breast Specilaist for 16 years before this cancer came to being. I was diagnosed

with Invasive Lobular Cancer, and of course it didn't show up in the mammograms.

Sneaky cancer is Lobular. Thats what scares me now, is that it didn't show up

before, and unfortunately I ended up with stage 3, and had to have a Bilateral

Masectomy. They should of been doing a biopsy a lot earlier. If I hadn't had

cystic problems I would not of known I had Cancer. No lump. I would of been on

the short list Sue.

MMmm yeah I know what you mean about Estrogen. My Tumours were Estrogen

positive. I don't think I would be given Estrogen somehow. Goes to show though

Sue, that the estrogen being low could well be causing my tiredness and aches.

Oh dear what do you do. Thank Sue.

Hugs again

Dianne

I need advice on Bone Scans

My wife had a 1.1cm with 2 nodes positive and she had a mastectomy.

I was talking to a lady who had a similar incident and is about

10-20

yrs older then my wife but she lives in Arizona. She told me that

her doctor makes her get a yearly bone scan.

I approached my wife's oncologist about the bone scan the other day

and he said that it is not worth doing a bone scan after the chemo.

He doesn't feel it is beneficial knowing whether you have cancer in

the bone two months earlier then when you catch it. He quoted all

the studies on bone scans and cancer. He said it is up to the

doctor

whether to do it or not. Some do it and some don't. I'd like to

know what everyone else has been doing. We have been done with

chemo

for 1 yr now.

Thanks

Tony

October 25, 2002

Dear Dianne,

Sigh, mine was a complex situation. My cancer also was never a lump. I was

diagnosed at age 33 on a mammogram, and similar to you, if it hadn't been for a

benign problem (in my case a fibroadenoma) I wouldnt have ever had mammograms.

My initial (mis)staging was stage 0 (DCIS) but they were wrong. I had a

mastectomy but the pathologist missed that there was invasive cancer in the

breast, and the second part was that they never checked my lymph nodes. Both

together led me not to have any further treatment (because they thought it was

all DCIS--precancerous). Nine months after my mastectomy I found an enlarged

lymph node in my axilla which turned out to be regional recurrence. That was

when another pathologist went over the slides from my mastectomy 9 months prior

and found the invasive cancer that the first pathologist had overlooked!!!!!!

She wrote it in her report too, so that's how I learned that it had been missed,

when I asked for a copy of my path report.

I was initially thought to be er positive and that was part of my decision to

have an oophorectomy after chemo (I was 35 at the time). Later they thought I

was er negative, but now they have reassessed it and have concluded (by 2

separate facilities) that I am er positive. As far as the hormones go, well I

had no choice. Aparently I'm tremendously sensitive to estrogen deprivation. I

had no quality of life. I could barely get out of bed. Exercise didn't help,

diet changes didn't help, they even tried a stimulant called provigil which

didn't help either. Antidepressents helped my hot-flashes and my libido

(Wellbutrin) but not my fatigue. My thyroid was checked 3 times--normal every

time. I became so frustrated and upset by the fatigue that I was suicidal.

Believe me for 2 years I was relatively happy about being postmenopausal but the

3rd year I just felt terrible all the time. I searched for any other answer and

saw a ton of experts and no one really had answers. I was at my wit's end when

I begged my doctors for hormones. My understanding is that most people aren't

effected this way by menopause, even in their 30s even surgical menopause. So

I'm not sure what it is about me, and sometimes I feel that it's a HUGE

shortcoming on my part that I couldn't cut it. But I did a ton of research and

at the time that I chose estrogen I was out of treatment for 4 years and I was

suffering so badly that I really had no other option. Further, although I am on

a LOW LOW LOW dose of estrogen, my bloodwork is still toward the menopausal

range. So I figure that since I removed my ovaries so young I " m probably better

off where I'm at now than I would have been had I kept my ovaries, who knows,

only time will tell. I was and continue to be amazed by the fact that even on

this small dose I feel so much better. My libido is back, my energy is mostly

back (not 100%) and my achiness is improved. I hate that we have to make these

decisions, though, and wish there were better options. Again I will stress that

the decisions I made were tough ones and certainly wouldn't recommend anyone

think I'm advocating hormones. I have to admit that my oncologists are for the

most part supportive, not because they think it's incredibly safe for me to be

on estrogen but because I made them understand the huge quality of life issue it

came down to for me.

Sorry to ramble on and on. This is an issue that I have grappled with over the

last 9 months and have gone back and forth and every which way with. I post on

3 other breast cancer boards (not including FORCE) and most have sort of

followed my story.

I'm happy to answer any other questions. You will find that I'm not a private

person. On the other hand I don't post alot to this list but not because I

don't care but between my work with FORCE and my family and the other boards I

post on, I just don't always have the time!

Hugs,

Sue

I need advice on Bone Scans

My wife had a 1.1cm with 2 nodes positive and she had a

mastectomy.

I was talking to a lady who had a similar incident and is about

10-20

yrs older then my wife but she lives in Arizona. She told me that

her doctor makes her get a yearly bone scan.

I approached my wife's oncologist about the bone scan the other

day

and he said that it is not worth doing a bone scan after the

chemo.

He doesn't feel it is beneficial knowing whether you have cancer

in

the bone two months earlier then when you catch it. He quoted all

the studies on bone scans and cancer. He said it is up to the

doctor

whether to do it or not. Some do it and some don't. I'd like to

know what everyone else has been doing. We have been done with

chemo

for 1 yr now.

Thanks

Tony

October 26, 2002

Once in awhile my onc gets angry at what he calls my " ad hoc approach to

follow up care " I threaten to go to another cancer center and he

capitulates. I guess I'm what they call a " difficult patient " .

Sue, I'd say you have a " difficult doctor " and not the other way around! If

your oncologist really doesn't respect you and your choices, you might want

to consider a new oncologist. I feel so dependent on my own oncologist that

I tend to forget that I am still the consumer here. It's my body and I'm

hiring an expert for their services, just like I hire a plumber when the

toilet breaks.

Jill

October 27, 2002

Dear Jill,

Actually this oncologist is one of my favorite. He always capitulates. I had

one of the country's top oncologists at MD before my current one and he

was IMPOSSIBLE! He wouldn't order ultrasounds of my lymph nodes (long story)

and so I fired him.

I actually have 2 breast oncologists, one in Houston and one locally who is also

very good and made the very insightful call about retesting my hormone status

since I was thinking of going up on estrogen. After 3 years of believing I was

er negative, the repeat tests showed I'm er positive. So as much as I hate

being on estrogen, at least I know that going up in dose would be a very bad

decision .

Thanks again.