Reality check

AlaskaAngel · Posted: Mon Apr 18, 2005 9:08 pm Post subject: Reality check

Hello Pat,

At diagnosis I was given the understanding that chemotherapy is used to delay recurrence and reduce the number of recurrences, but in essence does not extend survival. My interpretation of this is that most breast cancer survivors will eventually have recurrence with or without chemo. My first question is, is that understanding basically correct, or not?

Cancer doesn't scare me half as much as chemo does. I completed the chemo recommended for me and am NED and over 2 years out, but continue to be "stuck" about chemotherapy. When I asked my oncologist questions before doing chemo he avoided answering them, telling me that "it was academic". Prior to chemotherapy I never was given any information about recurrence or survival percentages as they applied to me.

I started out with a surgeon who advertises herself as a "breast care specialist" but failed to follow up on me and compounded that by not even reviewing her own clinic notes when I called her to try to get her to biopsy me. I don't even feel dislike for her; I just feel she doesn't know her job well enough to be doing it.

I am inspired by the dedication and integrity of some of the doctors I work with, but out of the 5 doctors I had at time of diagnosis not one of them (even the ones with female breasts) said anything at all about chemopause. They just said that it was likely I would go through menopause because I was over 50. Why on earth wouldn't any of these people that I feel some real love and respect for, provide any pre-chemo couseling at all for that? The youngest female one actually said to me "Well, the average age of menopause is 52 so you are going to go through it anyway." How can I get back to feeling confidence in what they know and what they advise me to do? I'm ER+PR+ so they are recommending an aromatase inhibitor for me. But both my internist and my onc simply stare at me when I want them to help me deal with chemopause, which started for me within 2 weeks after I followed their recommendation and started tamoxifen. In fact, my onc actually laughed at me when I said that I'd heard it causes vaginal dryness, and said that it does not.

I feel like they are the ones who need the reality check. Do you have any comments?
_________________
Dx Dec 2001 at age 50
Lumpectomy Jan 2002, 1.6 cm IDC plus some DCIS
Node neg
ER+, PR+, HER2+++
CAF x 6, 35 rads+boost
NED
Tamoxfen 1 3/4 yrs
In 2 clinical trials
bc for mom and 1 sis and 1 aunt and 1 granny
ovarian cancer for 1 aunt

pat devitavessa · Regular Joined: 09 Apr 2005 Posts: 25

Hello there,

You do not need the reality check! You are right faith in your proffessional team is very important. There is a book by Greg Anderson called, 50 Essential Things to Do. I suggest that you give it a try. You should be an active and equal part of your team, treated with seriousness and respect. If you have trouble reminding them of this underline passages in the book that apply and take it with you. Give a chance for all of you to work this out. If not, remember they should be working with you and for you. Many people have needed to replace team members because it simply was just not healthy.

Any of your medical questions can be addressed by either one of both Dr. Leo & Dr. Jay.

Try, to make one calm, complete statment of your concerns and ask if they can provide that, then do what you need for your health and peace of mind. Let me know what you decide. I am here for you.

Best of Luck.

Pat
_________________
Pat DeVita-Vessa, MFT

This is a dislaimer that this is not medical advice only information to help you

bethanyaok · Posted: Sat May 07, 2005 11:20 pm Post subject: Re: Reality check

Hi Alaska Angel... I agree with you that there needs to be more counseling support as we go throught this process!! I was 39 when I was diagnosed, and honestly, being told I would go into menopause (chemopause) was shocking and devastating for me. I was not prepared to hear this, and given no support in processing this bit of info and major change in my fertility status!! I was childless and single. This was a big deal. And no, I did not go into menopause afterall, and still have my monthly periods.

You asked for comments... My best advice would be to find another oncologist and internist. One who has compassion and has a clue about the symptoms of menopause (vaginal dryness being near the top of the list after hot flashes!) I, too, would have trouble putting my confidence in these people. Medical skill aside, their "bedside" manner needs some work. I am so sorry to hear you encountered such insensitivity during such a difficult time!! Hope by now you've found some support around the chemopause symptoms!!

Take Care,
Bethany
_________________
Bethany
breast cancer dx 4/17/00
4 AC, 28 rads, tamoxifen
7 years NED, and counting!
BRCA2+ 2/1/07

Lost Dad to Lung Cancer June '05

Kristen · Experienced user Joined: 01 Nov 2004 Posts: 60

Hi Alaska,
This is the first time I read the coping and support posting.
I think I have found that I need more support now than I did two years ago. I have some doctor issues too and one of them is about the chemopause like you. Also as you may remember reading in previous posts of mine in the bc room that my HER2+++ was never even mentioned to me. Another issue I have is why the heck they don't inform you of lymphedema????? I found that every time I tried to address lymphedema they all totally disregarded my feelings. I wanted to know what I can do to PREVENT it...blah blah blah..
Ok back to chemopause.,...I am 43 and went into it after starting chemo...ok so no period and some hot flashes...but then they also forgot to tell me that because of my age I could get my period back...and I DID...so where does that leave me now....it leaves me in limbo in premenopausal state of not knowing when my period is going to come and go. Also nobody seems to really be able to answer the question about getting your period back and our concerns being ER and PR positive???
OK...sorry I have some issues....didn't mean to rant!! LOL
I think part of the problem is that at the time of dx and surgery and chemo ...you really don't have the time to stop and think and you really don't know what questions to ask. I think there are a lot of good books, but you really don't have time read them at the time of dx...
I am reading a really good book now...Life After Breast Cancer..(I think) I am trying to get on with my life, but it is tough!!!
Thanks for listening..
Kristsen
_________________
Dx 3/03
43 yrs old
Invasive Ductal
1/14 + nodes
lumpectomy 1.6 cm
3 sugeries for clean margin & nodes
A/C & Taxol Dose Dense with daily Nuprogen
38 Rads
ER+/PR+
Her-2/neu +++
Stage 2
Tamoxifen 19 months
Treatment Finished 12/30/03

pat devitavessa · Regular Joined: 09 Apr 2005 Posts: 25

Hi There,

Sorry I have been so late writing back. I have been out of the country. Goodness, I wish I could tell you a comforting reason why some people can be so out of touch with others feelings. I have a bunch of thoughts but no excuses!I think that your feelings are vaild as are your thoughts. For YOURSELF tell the rough Dr.s to "slow up and listen and that you expect the time, hear and answers you pay them for". .

Hey, try reading Chichen Soup for the Surviving Soul. You can get it at any bookstore.

Just Thinking about you,,

Pat
_________________
Pat DeVita-Vessa, MFT

This is a dislaimer that this is not medical advice only information to help you

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