Seeing oncologist....

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babyseeester
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Date Joined Oct 2004
Total Posts : 826
   Posted 10/29/2004 8:55 AM (GMT -7)   
I have an appointment to see the oncologist for the first time on Tuesday.  I will find out the schedule of chemo and radiation.  Any advice on questions I should ask?  I seem to be in a mental state when I am at the doc these days and that's not like me.  I guess it's the severity of the situation.  I'm also having the staples removed the same day.  I think I'm healing better with this surgery.
Kathy


Carole2of5
Regular Member


Date Joined Aug 2003
Total Posts : 31
   Posted 10/29/2004 6:19 PM (GMT -7)   
Hi Kathy. It will help you to bring a tape recorder to your first appointment with your oncologist. That way you can listen to what you missed later. Also have the oncologist write down the names of the chemo drugs he'll/she'll be using. Ask how he's going to handle any side effects and how to contact him or another oncologist if you have difficulties after hours. Ask about the possibility of getting into a study. Studies can offer cutting edge treatment and sometimes, extra attention. Don't expect to think of all of your questions during the appointment so ask how you can contact him when you do think of what you want to ask. This is a very overwhelming time with lots of information coming at you. Take it easy on yourself and don't be afraid to ask all the questions you want. Good luck, Kathy.
In All Things, Give Thanks


Tavish
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Date Joined Jul 2003
Total Posts : 2272
   Posted 10/29/2004 8:52 PM (GMT -7)   
Hi Kathy-
For sure, the tape recorder is an invaluable tool. I wrote lists of questions and then taped the session, they don't mind if you ask them first. That allowed me to listen without having to 'get' it all, and I could go back and listen later. You may also want to ask if the doc or RN will email with you if needed, my surgeon gave me great information that way....and then it was already written down in the right way for me to re-read.

I asked about every side effect under the sun, and the RN chuckled and just told me to wait and see what happens. She was right, I did not experience most of what I was afraid of. If you do have a single side effect, ask how to combat it...no need to suffer in silence. And for nausea, there are a lot of drugs and cocktails, so if one does not work, please ask for a change.

Most of us, I think, will agree that the fear and anxiety of the first chemo is worse than the treatment itself. And keep coming here for questions...surely one of us will be able to help. Chemo is a very individual experience, no 2 of us will have the same reactions....

Good luck-
Lori


ardee
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Date Joined Sep 2003
Total Posts : 854
   Posted 10/30/2004 11:46 AM (GMT -7)   
Hi Kathy,

You've gotten some good advice. I'll be praying for you. I understand we might be "neighbors." I'm in Santa Clarita. If you need someone to go with you, just let me know.

Hugs,
Rita


babyseeester
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Date Joined Oct 2004
Total Posts : 826
   Posted 10/30/2004 6:21 PM (GMT -7)   
Thanks for the advice.
 
Rita, I live in San Gabriel, so yes, in a way, we are neighbors.  Thanks for the offer to go with me.  I will be fine.  I'm also having my staples removed the same day, so it should be FUN!  LOL  I have a couple of hours in between appointments, so I'll visit my former work place, which is near the hospital. 
 
I'll post again when I find out what the oncologist says.
Kathy


Luci
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Date Joined Jul 2003
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   Posted 11/1/2004 9:33 AM (GMT -7)   
Kathy, the only thing I can add is maybe take another someone with you. I always think 4 ears are better than 2. The tape recorder is a wonderful idea. It'll help you relax during the appt. knowing you have everything on the tape to listen to later, when you're not quite so anxious. I'm a firm believer in a large hot fudge sundae immediately following the appt. It's comfort food, you know. L&H's, Luci
In the depth of winter, I finally learned that within me lay an invincible summer.  Albert Camus


nurse_mikki
Regular Member


Date Joined Jul 2003
Total Posts : 349
   Posted 11/1/2004 12:08 PM (GMT -7)   
Hi Kathy--the ladies have given you good advice. The tape recorder and extra person were invaluable to me.

I also kept copies of all of my test results, pathology reports etc in a folder. That way, if you are seeing more than 1 doctor (ie the onc, radiation onc, surgeon, family doc, gyn etc) you have everything you need available at your fingertips rather than having to wait for records to be sent to them. Just ask your docs for the test results as they become available.

I kept a regular spiral notebook, too. After I listened to the tape at home, I would write things down in the notebook. I would also use the notebook to jot down questions/symptoms I had in between appointments so that I could discuss at my next appointment.

Hugs to you,
Michele
May this disease NEVER be allowed to take another wife, mother, daughter, sister, lover or friend........
~~~~~~~~~~~~~
I cannot control the wind, but I CAN adjust my sails 
 ~~~~~~~~~~~
You can choose to look UP or DOWN--it's all about putting perfume on a pig. It is still a pig and it STILL stinks, but it stinks BETTER!
 ~~~~~~~~~~~~~
Breast Cancer Chronicle Demystifying BC, one step at a time
 
 


babyseeester
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Date Joined Oct 2004
Total Posts : 826
   Posted 11/2/2004 7:20 PM (GMT -7)   
I am back from the first visit to the oncologist.  He is very informative.  This was a 'get to know you' kind of visit, is the best way to describe it.  He seemed surprised at the size of the tumor.  But, one thing he told me, which I found enlightening, is that I am not sick!  He explained how much cancer cells are needed to create a 2cm sized tumor and since I only had 1 lymph node affected (it showed evidence of spilling outside the node), chances are that I MAY have stray cancer cells throughout my body, but there is no way to tell.  Therefore, the need for chemo. 
 
confused  he down side of what he told me is that based on my particular circumstances, I have a 50-60% chance of recurrence.  Chemo will reduce that by 50-55%, so even after all this, I still have a 20-25% chance of a recurrence in 10 years.   The pathology report he received didn't include info whether mine is HR+/-, so he will need to find that out.  I go back in 2 weeks. 
 
He took time with me and wrote everything down for me.  His nurse practitioner sat in for part of the time and seemed very compassionate.  She gave me some info on breast cancer, support groups and an excercise program at the hospital for patients undergoing chemo.  Even though the hospital isn't close to home, I'm thinking about it.
 
Well, that's it for now.  More later.
Kathy


Tavish
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Date Joined Jul 2003
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   Posted 11/2/2004 7:44 PM (GMT -7)   
Kathy-
If it helps, they would give you chemo even if your nodes were all negative. Even in that case, they say there is always the possibility that cancer cells have eeked out...If I recall, 1/3 of women who are node negative can still have cancer cells that are "out there"....but when I did chemo, they said they had no way to know who that 1/3 was, so we all got chemo. My point is that your onc may not have told you much different in other circumstances.

Did they talk about tamoxifen (or femara) and or radiation? Those can buy you percentage points too, to reduce the chance of recurrance. Stats are just that...and can only try to predict what may or may not happen. You may have a 20% chance of recurrance, but that also means 80% chance of being cured.

Do you have Gilda's Club near by? It was founded by Gilda Radner, and there are locations all over the US. It is a free cancer support community, offering networking, support, crafts, activities, dinners, lectures, childrens' activities, etc. You may want to check online for locations.

Hang in there, you sound great!
Lori


Desertdreaming
Regular Member


Date Joined Jul 2003
Total Posts : 319
   Posted 11/2/2004 7:55 PM (GMT -7)   
I had no nodes but still had chemo.  Was told that it was preventive maintenance.  I took tamoxifin but switched over to Amrimidex with much better results for me.  Glad to see you posting.  Can you believe that Steve and  Paula have been married for 11 years already. 
Annette
We have raced "for the Cure"
Worn Lee's Jeans on Friday "for the Cure"
Bought New Balance tennis shoes "for the cure"
Worn pink ribbon pins "for the cure"
Collected donations "for the cure"
Ate pink M&M's "for the cure"
Drank Sutter Home wine "for the cure"
Spent an extra $.08 on a stamp "for the cure"
Ate Lean Cuisine frozen dinners "for the cure"
 
We have all done our part "for the cure"
now you do yours and get us that cure.


gma
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Date Joined Jul 2003
Total Posts : 2921
   Posted 11/3/2004 6:04 AM (GMT -7)   
My daughter had chemo with a large tumor and no positive nodes after having a mastectomy. She is now almost six years out and is doing fine. Her chemo was 4 rounds and she had minimal side effects, tiredness and a little nausea. Hope you will have an easy time, too. Hugs MK


babyseeester
Veteran Member


Date Joined Oct 2004
Total Posts : 826
   Posted 11/3/2004 12:47 PM (GMT -7)   
Thanks for the replies.  Yes, radiation will follow the chemo and he mentioned hormone therapy for 5 years, but didn't say Tamoxifen specifically.  I know I need to look on the bright side of having an 80% chance that it won't recur.  I was just being emotional when I got home.  It was a long day.  But today, I took my walk early, napped, showered, doing some laundry, and posting on here.  LOL
 
Annette....yes, it's hard to believe they have been married that long.  They got married just a month before our Mother died, too, so it is easy to remember their years.  Our mother died on Thanksgiving day that year.  Boy, was that tough.  She hang on until I could fly home, though, even though she was basically in a coma.  She knew I was there, though! 
 
Enough of that!  Let's be happy and positive!!!
Kathy


ardee
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Date Joined Sep 2003
Total Posts : 854
   Posted 11/3/2004 5:04 PM (GMT -7)   
Hi Kathy,

I was also node-negative, but received chemo too. They probably won't talk about Tamoxifen right away, as you need to get thru chemo and rads first. Within 6 months of my surgery, I was finished with treatment and looking forward to being "normal" again. I have to say that treatment went much faster than I thought it would. Hang in there. We'll be with you.

L&H,
Rita


Cathi
Veteran Member


Date Joined Jul 2003
Total Posts : 702
   Posted 11/3/2004 8:39 PM (GMT -7)   
Kathy..so glad that the appointment with the Onc went well and
that you like him...You seem to have a really good attitude which
is so important and at times very hard to do..Please know that
we are here to help you get thru this...........

Cathi
Sometimes it is a slender thread, Sometimes a strong,
stout rope; She clings to one end, I the other;
She calls it friendship; I call it hope....


cupycake2
Veteran Member


Date Joined Jul 2003
Total Posts : 955
   Posted 11/4/2004 9:33 PM (GMT -7)   
Kathy,

Sending you my thoughts and prayers too. Just wait and see, these next few months will fly by and before you know it you will be done with chemo and rads.

It has been almost 20 years for me. I was dx'd at 33 and had a recurrence 2 years after that. Hope just reading that will give you some encouragement.

Aren't these ladies just the best? I sure wish I would have had them 20 years ago. AHHHHHHHH

Hang in there, there IS a light at the end of the tunnel sweetie.

God Bless,
Debbie
^j^ ^j^ ^j^
"What sweetness is left in life if you take away friendship? It is like robbing the world of the sun"
Cicero


DiVanDyke
Veteran Member


Date Joined Jul 2003
Total Posts : 734
   Posted 11/8/2004 9:07 AM (GMT -7)   
Hi Kathy and Deb,
Kath, I like Deb had a recurrence after 2 years and now it has been 4 more and I am blessed to be OK. I had 10 positive nodes the first time and a 5cm. tumor the second. I am ER- so no tamoxifen.
I am thankful every day. Thanks for reminding me Deb that you had had a recurrence also. So Kath, you may Never have one but even then they are survivable. Write me anytime or I would call you if you wish. I've had about everything. Hugs, Di
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