Thank you for the welcome!

Westcoastgirl · 02-14-2009, 11:18 AM

Thank you for the welcome
I want to thank everyone that replied to me in the New Comers Group. I wept to read your welcoming messages. Thank you for sharing with me. It was suggested that I post here. Please bear with me as I learn to navigate here. Your replies helped me to feel positive and to accept my double mastectomy. I really liked my surgeon but did not understand why he was so adamant. I thought at first he saw me as someone that would not be able to handle the fear of the cancer returning if I kept the one breast, despite me being what I saw as quite contained in the meeting. I am at peace with that part of the puzzle now. Thank you. I had had two 6 month recalls for mammograms before I asked for a biopsy so going into the mastectomies we knew I was Her2 positive. At that time I did not really understand the significance. I will be going in to receive the Port this Monday and then meet with the Oncologist next Wed to discuss beginning treatment. Thus far I have had a bone scan, chest xray, internal organ ultrasound and a MUGA (no results yet).

I am wondering if I should request anything to check the brain?? Thank you for your support. Carolyn

invasive high grade ductal carcinoma 12/30/08
ER positive
PR positive
Her2 positive (3plus)
double mastectomy 1/15/09
8 nodes taken, all negative

ElaineM · 02-14-2009, 12:47 PM

Have you considered a brain MRI? I think that might be able to tell you if everything is going along okay up there at the top of your body.
Take care.

Westcoastgirl · 02-14-2009, 01:04 PM

Hi Elaine,
Do you think I should ask for a brain MRI? I have to say I am not that happy with my Oncologist. The first time and only time I have met him thus far it became evident he did not even know I had already had my double mastectomy. I am a headache type of person and figure I will have headaches from stress but as I read here there are many with brain tumors. I thought if he figured it necessary he would request it. I suppose I need to be more demanding?? I think he has done all the other diagnostic tests he deems necessary.

Midwest Alice · 02-14-2009, 01:09 PM

Welcome Carolyn, My name is Alice and I am kind of new too. You will love it here surrounded by love and strength. Just ask your questions and read, read, read!! I am learning so much and growing stronger each day.

Jean · 02-14-2009, 03:37 PM

Dear Carolyn,
Welcome to our very special family. I am sorry that you have been dx. and need to be here, but it is a wonderful source of information and support.

With that said, I would advise having the MRI of the brain, first of all you want to have a base line and since you are checking the rest of your body, it is only wise and prudent to do the same for you're beautiful brain.

Unfortunately we do have many sisters who have had their bc travel to their brain, but when caught early and treated you can have positive results. You may have to demand the MRI as most onc. do not believe in scans unless you are experiencing symptoms. Many have complained of headaches in order to comply for the scan.

I wish you the best during you're treatment and know that you can ask any question anytime.

Hugs,
jean

Westcoastgirl · 02-14-2009, 04:02 PM

Thank you all for responding. I am a bit hesitant I think to be demanding of anyone but after coming here and listening to your well intentioned advise I am going to go on Wed to my Oncologist appt and ask for, no insist upon a brain MRI. I agree that there should be a baseline done. As I said, so far I am waiting for results on chest xray, ultrasound of abdomen, MUGA, and bone scan. Is there any other test I should ask for while there? ...blood tests, etc? Thank you, Carolyn

invasive high grade ductal carcinoma 12/30/08
ER positive
PR positive
Her2 positive (3plus)
double mastectomy 1/15/09
8 nodes taken, all negative

tricia keegan · 02-14-2009, 05:48 PM

Carolyn, I missed your earlier post on the welcome thread but want to say hi and wish you luck in your upcoming treatments.

Westcoastgirl · 02-14-2009, 06:19 PM

Wow, you guys....I am overwhelmed with the welcome I have received. I will find out this coming week what my treatments will be but will go to that appt with much more confidence than I would otherwise have felt. I feel like I have found a home. Thank you. Carolyn

CLTann · 02-14-2009, 06:35 PM

Carolyn,

Your data are a little skimpy. For the oncologest to make an informed decision, the aggressiveness of the cancer, size of cancer(s), site of cancer, and all relevant info are needed. Of course, the HER2 quantitative info is also a part of the puzzle. From all these, the onc, based on his or her experience, may suggest brain MRI. Some doctors do not support an initial baseline brain scan.

Best luck.

Diana1993 · 02-14-2009, 07:54 PM

Carolyn,
I didn't care for my onc. at first. I thought he was too blunt, and rehearsed. After 16 years with this wonderful Dr. I have a healthy respect for him. For example, I jokingly said to a replacement nurse, last year " I guess I will have to sell my house to get required drug in the U.S." My doctor called that evening with advice not to sell my house, because the drug in question might add four more months when added to current treatment. I do take printouts of various treatments and he has openly accepted them and reviewed them. He has also taught me that I'm the first test result, meaning, what I tell him during the first part of the visit is the most important follow-up test. I no longer always say "fine" or "you tell me" when asked "How are you feeling"
I guess what I'm trying to say, is, build a relationship with your Dr. I do think the doctors sometime forget each one of us is a unique case, but they have only so many options available. By the way, I have never had a brain MRI. I think I'm too afraid they won't find one (brain), but I'm sure if I insisted I would get one. (MRI)
You have found a wonderful, informative site> I'm a lurker; here everyday, but most of the time too shy, or uninformed to comment.
Love your quote,
Hugs,
Diana

SoCalGal · 02-15-2009, 01:05 AM

Welcome...

If you are feeling demanding of your doctor that is a positive sign. Good job! If there was ever a time in life to be demanding this would be it. It's good you are here on this site. We will help you thru things and you can read the many different point of views that we bring to our her2 family.

I've been on this site for the past almost 2 years and learned more from this community than from 10 years of fighting cancer. IMO - it's unlikely that you have brain involvement but if you can get an MRI of your brain you can put your mind at ease and it will serve as a baseline.

Flori