Does it get better

pgoddard · 09-27-2007, 10:28 AM

I was recently diagnosed with invasive loblular cancer and a had a bi-lateral mastectomy on 09/20 i went in on 09/26 for my post op and was informed I had 1 sentinel node test postive(which was not found during surgery when it was tested) next week I will have another surgery to remove more nodes.

I will start my treatment soon after useing Dose Dense Chemo? I was informed I will have hair loss, I also found out my insurance company does not cover wigs. good ol HMO, juust thought I would get my frustions off my chest (no pun intended)

Pamela

Sheila · 09-27-2007, 10:45 AM

Pamela
Are they removing more nodes as a double check since you said the sentinel node was at first thought to be neg. As far as the chemo goes, although none of us are jumping up and down to get it, it is a necessary part of the best outcome for putting this caner behind us. Let us know what type they plan for you and there will be someone here to help you through it. Dose dense is very common, so don't let that scare you...actually you are miles ahead of where I was almost 6 years ago when I was diagnosed...things change very quickly, and your treatment will be much more advanced and thorough. As far as wigs, you can go to your American Cancer Society Regional office and they have wigs for free....or get in tough with them, they can help you obtain a wig. I got one but have only worn it a couple times...I am much more comfy with a scarf or bandana. It is an individual thing. You are in my thoughts as this journey begins for you...believe it or not, most of us are much better off for what we have gone through.

pgoddard · 09-27-2007, 11:07 AM

Sheila,

Yes they are going to remove more nodes as precaution due to my age and also I lost my sister last year to cancer. I was told I needed to get tested for the gene as I have a 14 year old daughter, the treatment medications are 4-AC 4 Taxol every 2 weeks? this is so new to me I ma not sure what any of this means, also thank you for the information on where to obtain help for the wigs, I bought alot of bandanas but am not sure if it is appropiate for work. I really appreciate this forum as I cannot rally talk about my feeling openly to my family, I really am not sure if the are 100 % there when I talk and truly belive there hear about 50 % of what they want to belive

Thanks do much for the response

Sheila · 09-27-2007, 12:29 PM

Pamela
You do not mention whether or not your breast ancer was Her2 positive...if it is, you should get Herceptin for a year or 2 after the other chemo. Herceptin is very easy to take with minimal side effects for most. I have been on it for 4 years for metastatic breast cancer. I know that the AC is Adriamycin Cytoxin and the taxol I know well as I am on it right now. Maybe someone else will answer with the AC as i have not had that, but the Taxol has also been easy for me to take. Please ask any questions you may have, we are here for you.

Christine · 09-27-2007, 12:46 PM

Pamela,

I buy my wigs at www.paulayoung.com They have the best prices and perhaps the best return policy on wigs that I have ever seem.

Hugs
Christine

chrisy · 09-27-2007, 01:05 PM

Pamela,
My friend Sheila beat me to the punch with as much as I know! All I can do is agree, she's right in everything she has said. Knowing about the Her2+ is very important.

Re the "wigging out", I bought one very good wig, but actually most of the time I wore hats or a variety (and I DO mean variety!) of free wigs I got from the local cancer center. I made several trips there and had one that was so NOT me it even fooled my husband!

But for me, the #1 priority was my comfort - which usually meant a soft cozy hat to keep my head warm. If you're looking for some good news, you will be going through this over the winter months, and so whatever you put on your head will be more comfortable.

Your local ACS should have a program called "look good feel better" which is free and teaches you how to use makeup, scarves, etc. to your advantage. They also provided a free wig. So there are plenty of options.

At work, I usually wore hats or ballcaps. Another woman in my workplace wore a wig initially and then went to bandannas. She looked absolutely beautiful! I don't know what your workplace is like, but I would hope you would have a good deal of latitude.

If I could give you advice, it would be to do WHATEVER makes you feel good and comfortable - both physically and emotionally.

And...remember that all the purpose of getting the chemo is to rid your body of cancer, hopefully for good. Everything else pales before this goal.

fauxgypsy · 09-27-2007, 05:29 PM

I found that hats and do-rags (much more so than scarves) were much more comfortable than wigs. It might feel different in the winter. McCalls has a pattern for do-rags. It is in the uniform section with scrubs. I made several out of really fun fabrics. Now that I have half inch of hair I keep getting compliments on my "haircut'. Keep asking questions. Learn all you can.

Leslie

BonnieR · 09-27-2007, 05:37 PM

Leslie, I have to ask. What is the difference between a scarf and a "do-rag" exactly? I am thinking it is a geographical thing. You in Mississippi and me in California!!! But the do-rag sounds real comfortable!!!!!

Jean · 09-27-2007, 08:31 PM

Hi Pamela,
Our wonderful Shiela answered all of your questons. I just wanted to welcome you to our wonderful sisterhood. A breast cancer dx can be
terrifying, but you will find that most of your questions will be answered
here and this is just a great place to visit to connect with others.

Sometimes it is very difficult for the family to absorb everything.
It is overwhelming thats for sure. I wish you all the best with
your node surgery. Just set your mind on one thought, "You will
beat this."

Wishing you the best!
Blessings,
jean

BonnieR · 09-27-2007, 09:02 PM

Pamela, we all know how frightening this is for you. We all have been there. Are STILL there! But it DOES get better when you start reaching out and getting answers. Being your own advocate. As you are given literature to review, you will formulate more questions to ask. Be sure to write those down for your doctor and write the responses too. Then you can ask us specifics about the practical day to day stuff. The coping we learn here.
Keep the Faith!

tousled1 · 09-28-2007, 08:20 AM

Pamela,

Welcome but sorry you had to find us. The most important thing that has already been stated is you must know your HER2 status. It should be on your final pathology report. I had the A/C but had Taxatore instead of Taxol. With the A/C you can expect to loose your hair around the 14th day. Yes, you loose your hair quickly with A/C. Good luck to you and please keep us posted.

mke · 09-28-2007, 09:02 AM

I'm mostly going to echo the others.

I bought a couple wigs at Paula Young one, which I bought to "release my inner redhead" as my sister put it, reduced my husband and sons to tears of laughter. It did make me look like Bozo the clown. The other was OK, but I only wore it a few times - like when I had to get my picture taken for my driver's license renewal. The best things I had were some terrycloth turban things that one could run a scarf through to dress up or just wear to bed. My head got cold without hair. I cannot remember where I got them, but they and a hat were my mainstays.

Be prepared for your scalp to be tender when your hair starts falling out, it's not bad and it doesn't last long, but it's an odd sensation.

I had the DD AC and DD taxol too. It's pretty standard now. Everybody is different and responds differently. I had a hard time, could not have worked through the entire process (but did much of it), others certainly have. The dose dense regimen is hard on your white blood cells so your blood will be tested to make sure your cells counts are adequate. It is likely that you will have injections to boost white blood cell production - neupogen or neulasta. Some people have no problems, some have bone pain.

The AC particularly is toxic and you will have to drink a lot of water to flush it out of your bladder. What is not often mentioned is that you want to flush that toxic urine off your genital area after you pee. Dab, rather than wipe and then use some sort of spray bottle and dry.

Your family does not really understand what is happening with you. That's just the way it is. Don't expect too much of them, try to tell them exactly what you need and likely they will respond.

Best wishes

pgoddard · 09-28-2007, 02:07 PM

Thank you for welcoming me aboard, I have started doing some research breast cancer and also was looking for a support group and I believe I found the right one you all are so knowledgeable and I am such a green horn as they call it I am truly blessed to have found this site. I am taking a notes and your information and experience is truly vital to me. Once again thank you all!!
<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com

ffice

ffice" /><o

></o

>