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-   -   My sister (https://her2support.org/vbulletin/showthread.php?t=53802)

Kathleen09 04-03-2012 02:58 PM

My sister
 
Hi everyone,
My sister was recently diagnosed with breast cancer - Stage 2, 2 tumors that are both <1 cm and we know it's in lymph node (only one that we know of for now...they nipped the node by accident in the biopsy so that's why we know that now). She is Her2+ and Triple receptor positive (sorry, still not sure what all the right terms are etc). Her surgery is April 10th - so that's when we really find out the details. Both of our parents are very ill - so the cycle of life has turned our roles as daughters more into parents to them. They don't know any of this yet. My sister is my best friend, my maternal figure (she is 13 years older than I am), she's my rock and my everything. We've been mistaken for twins at times and our brains operate as twins too which is amazing. Anyway, her diagnosis is devastating but she is being so amazing and so strong and I know I have to be strong for her. I've been reading, reading, reading all I can to know as much as I can - it's too hard for her yet to read what the web says. And any details I can take care of for her I am. We're going to look at wigs on Friday just so she can do that when she is strong both physically and mentally. I also have 2 very good friends that are breast cancer survivors so I've been talking to them a lot. I'm encouraging her to celebrate the small wins as we go and that they will be our pathway to true victory. If you have any suggestions on what I can do for her to support her the best way I can in every and any way I'd love the input. Until she has the surgery and we know exactly what is there, the "official staging" etc and she meets with the oncologist it's so scary - the unknown I mean. Also is it ever possible to not receive chemo when it's HER2 and in the node?

KDR 04-03-2012 05:36 PM

Re: My sister
 
Hi, Kathleen09,
I can feel the love between you and your sister, and that's wonderful! Lucky people! There are many questions in your post that I can't answer, but I can tell you that you've come to the right place for questions, and you're joining people who understand.
Wishing you peace,
Karen

chekmark 04-04-2012 04:30 AM

Re: My sister
 
Kathleen,
First I want to say that the bond you have with your sister and parents is amazing. May you always stay so connected. Her journey is just beginning but with your strong support and her positive outlook things will hopefully go well. Lets just hope that it was caught early as it sounds like it was. I think the standard of care is chemo with herceptin with Her2 but I think there are some on this board that have had herceptin only. I could be wrong. Chemo is doable and herceptin is a breeze. It is all so scary right now but it gets better. I cannot answer all of your questions but I hope that things go smooth for your sister. Someone her will chime in with answers for you. Her 2 is impatient and I think that is why they recommend chemo with herceptin. Please keep us posted. God bless. Darlene

snolan 04-04-2012 10:00 AM

Re: My sister
 
Your sister is so lucky to have you there to help her. The one thing that seemed to help me get ready for the battle is when my Dr told me once I had surgery, the cancer is gone, everything we are going to do i.e. chemo/herceptin is to make sure it doesn't come back. Do everything you can do to make sure it doesn't come back, don't be scared of the unknown of chemo as we are all here to help her through it. The begining of this journey is the scariest but it does get better. Be wary of the web information as most of it does not contain results since herceptin was approved. Herceptin has changed to results so much for the positive. Let the Dr educate you on the whats and hows it is a much less stressful way. Good luck with your journey.
Suzanne

Paty 04-04-2012 09:59 PM

Re: My sister
 
Dear Kathleen09,
You have come to the best board for her2 BC women. You are a great sister, I also have one sister I am very close to and I understand your worries and pain. It is very important that the tumors are small and once you have the final results after the operation, you will have more answer to what it is the right treatment that your sister needs to follow. her2 is supposed to be a form of very agressive cancer, but wait, dont read to much in the internet or you will be scary of all they say. Fortunately to us we have many treatments that keep us very well for a long long long time. Nowadays there is a drug called Herceptin (Trastuzumab) wich targets the Her2 and blocks it to keep acting. I am a 6 years survivor, my original tumor was 2.2 cm and I did receive chemo, radiawtion treatment and Hercepting for a year (every 3 weeks). So far I am doing fine and I am able to follow a new normal life. Feel free to ask any questions, there are so many of our survivors very well informed here that they will be able to answer your questions. God bless you and tell your sister that there e many treatments out there that re avIlable. I am sure her doctor will help her to find the best treatment for her according to the results.

NanaJoni 04-18-2012 05:34 PM

Re: My sister
 
Kathleen - checking in to see how your sister's surgery went. Hoping and praying for the best.

Kathleen09 05-04-2012 10:40 AM

Re: My sister
 
Hi Joni! What a nice surprise and how sweet you are to check in! I never got a notification that you wrote this message on 4/18. I have to tell I often think of you. Your first message to me in March I think it was... in particular gave me such strength that day when I was so scared and sad. I in turn was able to give that strength to her. I think of you every time I know she just needs to vent and I need to listen (following your wise advice) and I thought of you the first time I made her a healthy meal (another piece of wise advice)...I made her soup. She loves soup and loved the one I made. It's a lentil and swiss chard soup and its really delicious. If it sounds good to you I'm happy to send you the recipe. :)

Her surgery went well - although they determined the cancer was in 4 nodes and in one it came out of the casing slightly. But the good news is that her margins are clear and she recovered like a champ! :) We just went to her oncologist on May 1st - what a nice man. She will most likely start chemo at the end of this month.

When the pathology came back it was a dark day for her. She was so sad and it was the hardest day to date for her. The next day she told me that she woke up and wrote herself a note to Take the Bull by the Horns. And she did...she picked herself up and fought though her sadness. When she told me I was in awe of her. So I went on line and found a small bull stuffed animal...I wrapped him up and wrote her card saying how strong she was and how proud I was that day when she told me that she wrote herself that note and that this stuffed animal bull would be our mascot during this journey...so whenever she got scared or down and out he would be a reminder that we need to keep taking the bull by the horns and we'll beat this thing hands down and send it back where it came from. :)

Thank you again for checking in, Joni. I even told my sister about you. It's amazing how we all can impact each others lives even as complete strangers isn't it.

Talk soon,
Kathleen

NanaJoni 05-04-2012 12:18 PM

Re: My sister
 
Kathleen - thanks so much for the update. Sounds like you and your sister are moving forward. This rollercoaster we ride can take us to a wonderful high or a terrible low in a matter of moments. The stuffed bull is a wonderful idea - having a tangible thing to hold onto is really helpful. I have a ring with the names and birthstones of my five grandchildren - when I was at my lowest I only had to look at it to get that little extra boost I needed to fight a little harder. While it may seem that these tough times will never be over, you'll be so surprised next year when you look back. So many of us here pray daily for each other - so draw on that energy when you need it. ( we may have a cosmic connection - my mother's name was Kathleen and one of my grandaughters is named for her, too).

Kathleen09 05-06-2012 05:41 PM

Re: My sister
 
Hi Joni - Hope you enjoyed your weekend! Yes, we're moving forward. Your ring sounds so beautiful and I'm so glad it was able to give you such strength. Can I ask you a question?...I see in your stats you did TCH. Did you have any discussion with your Dr on TCH vs AC-TH? Reason I'm asking is my sister is deciding between the two and I know there's been some debate on the topic. I'd love any insights or information you have.

NanaJoni 05-06-2012 06:34 PM

Re: My sister
 
Kathleen - my doctor didn't ever mention or consider the AC-TH. I was stage one and one of my small tumors was triple negative, the other was er-/pr-/HER2+++. With the double mastectomy and clear margins, TCH seemed to be the best option. I did follow up with the radiation because triple negative cancer doesn't respond to the hormone treatments like tamoxifen. I had a pretty rough time with each of the 4 treatments I did - potassium crashed on first one, infection, and then I threw 3 pulmonary emboli after the 4th. The blood clots were from all the multiple surgical procedures I had (3 for ports) and my onc decided I'd had enough. Some newer research shows that 4 TCH is as effective as the standard 6 so I'm okay with it. I know this all sounds terrible but at my age and with some other health issues I've had (autoimmunine-lupus, genetic clotting disease called Leyden mutation Factor V, etc) - I really think I did fine and have had a fantastic outcome. I've lost 40 lbs and now have lovely white hair. Your sister will lose her hair for sure on either regimen so start collecting scarves and/or baseball caps. I found out I look great in hats - I jokingly told my husband that I must have looked like hell before I had cancer because now people tell me I look wonderful. LOL You've had a lot of responses on another thread from folks who've had AC-TH and TCH so you should have some good info to digest. I agree that some of the pre-meds (especially the steroids) can be tough but they are necessary and make the treatments more tolerable. My cousin did the AC-TH and did very well - she's almost at the 5 year mark now and no recurrence or other problems. I had the TCH every three weeks with the Herceptin weekly. After the last TCH, I did herceptin for the next year. That's pretty standard. Herceptin is easy and is every three weeks for the 52. I had the runny nose side-effect and some thinning of my nails along with some mild fatigue during the few days after a treatment.
All that being said about treatment, you may also need to be sure your sister is staying healthy emotionally. That was a huge part of this journey for me. I did find a wonderful counselor who helped me deal with all the changes we were going through-physically, financially, spiritually. It's really hard to deal with so much and still be feeling your life is in the balance. She will surely never be the same - it changes you to face cancer. I feel I am a better, stronger, happier person now and get some pretty strange looks when I say how blessed I am to have had cancer. I've gone on way too long here so I'll finish now - you are both in my thoughts daily.

Kathleen09 05-08-2012 10:38 AM

Re: My sister
 
Hi Joni, So wonderful to hear how it changed you for the better. Thank you so much for all your insight. You have such a positive attitude. My sister does as well and I know that will help so much. She is doing extremely well emotionally all things considered. She hasn't missed a beat with work and is doing all she can to eat healthy so she is as strong as she can be during chemo. We already have 2 wigs and ton of accessories - sleeping caps, yoga caps, Baseball cap with hair....so she's all set and ready to go. She wanted to get all of that stuff done and out of the way before chemo started. We were laughing because the wig is actually the style we've been trying to get our hairdresser to do on both of us for 2 years! lol She also discovered a Wellness Center near us - she went to the open house over the weekend and LOVED IT! There's a nutritionist on site, a small work out room, everything they sell is natural and for disease prevention. We both got our antioxidant levels taken as well - her's was super low which isn't good, we need to get her higher before chemo starts. Mine was above average, but not where it should be. Which kind of surprised me because I eat VERY healthy and always try and eat a variety of fruits and veggies all the time to make sure my body is getting every vitamin it can. Have you ever had your levels checked - really was so interesting. I can send you the information if you like. The scanner was on Dr Oz once - there's video on You Tube all about it and how they help fight cancer. Here's the link if you'd like to see it: http://www.youtube.com/watch?v=QerPwoLVTIk.


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