Calling all TNs

Hi everyone,

I'm a newbie here, actually to the whole breast cancer thing. I'm 69 years old diagnosed with triple-negative breast cancer, grade 3 with a high Ki-67 (over 50%). I have not yet met with my surgeon (I put up a new post a few minutes ago) and don't even have an oncologist or even a name of one. Not sure what to do next but I guess the surgeon will be the next person I see. Sure wish there was one of those "nurse navigators" with me now but I guess that doesn't come until you've had surgery?? I have tons of questions. I see that sometimes they try chemo first before surgery. Is anyone doing that now?  I'm afraid by meeting with the surgeon that they'll want to do the surgery first and then I'll get a referral for all the rest, but if that's not the right path for me how will I know if all they do is schedule surgery?

DiV,

I am including you in my prayers. You can do it. You're strong in body and spirit

GrammaSue,

Sorry you are just diagnosed, but you came to the right place. These boards are packed with information for every step of the way so my advice is to spend some time on them to get more comfortable with what you will be dealing with. The initial diagnosis, while scary, leaves us all kind of "out there" hanging until things get moving along. Usually the Breast Cancer Surgeon is the first step and they make the recommendations from that point on, including having a nurse navigator assist you if their center offers this service. It is very helpful to have experts guiding you through this, but others have decided to get second and third opinions from other cancer centers as well so the first meeting is important for you in comfort level with the Doctor.

One thing that helps all of us is if you put your profile information up. You do this in the settings section. People with similar diagnosis then can offer suggestions/ideas to you. Things you might not have thought of to ask. I found it helpful to see what other people did or did not do during their treatment. Also, the most recent studies and trials are updated here daily. Check out your profile for this information, the moderators do a great job of placing information that is relevant to you there for you to review.

You can post on the board here or also send a Personal Message to someone if you have questions. All of this helps with the anxiety that comes with this diagnosis. And yes, the waiting is one of the hardest parts but check in her frequently for support. This is a very, very knowledgeable group who understand where you are at right now in the process.

Sending good karma your way,

Anne

Dear Mandy and Annie, sending you all the love in the world, and thoughts of hope and peace. Love Cass x

Meadow I am so sorry to hear about your surgery and infection. Your in my thoughts and prayers. Wishing you a speedy recovery.

Oh Meadow! that stinks! I, too, had to have an implant removed. Sometimes it seems two steps forward and then one step back. Those antibiotics will do the trick, and when all healed you can get back on track with the reconstruction! Wishing you a SPEEDY recovery!

Welcome Gramma Sue, - this is a great group!

Sending BE WELL wishes to all here.

Sorry to hear about your problem Meadow. I hope it can be resolved soon.

Gina

Kathy so sorry about your Mom. I think I understand how you feel. My Mum is 88 and found my cancer very hard to deal with. My brother also had (prostate) cancer a few years ago, and I have 2 sisters, one of whom died when she was a child. I'm glad that your Mom had such a good and peaceful passing, it must be a great consolation to you. Your Mom sounds like a wise lady.

Meadow so sorry about the infection and surgery. That's a bummer. Hope you are doing OK now. Sending love. X

What a beautiful prayer, Gina! You are an inspiration!

Meadow, that stinks about your infection!!! Another hurdle! I am sending healing thoughts and prayers. I will also meditate on your healing.

Lyn, that is so interesting about the American Cancer Society and the call line. I never knew that!

GrammaSue, immediately after I was diagnosed I went to a medical oncologist and a breast surgeon. My medical oncologist became my primary point of contact and frankly still is for all my follow up (although I did follow up w my breast surgeon and plastic surgeon a few times) and any questions related to my breast and overall health.

I would recommend choosing a major teaching hospital for your care, if possible. I actually read an article that outcomes can be affected by where you get your treatment......I bet the American Cancer Society nurse could guide you further and/or perhaps start with who/where you were diagnosed?

Things will seem overwhelming for a while but starting with your course of treatment and staying connected with people who care will help you traverse the road ahead.

There are amazing women (and men) on this site who truly care.

Janet

Good morning everyone,

Catching up on what is happening here since my lumpectomy on Monday. Sending healing prayers to Meadow for the infection to clear up quickly and on to the next step. Set-backs can be so discouraging but with all of the support of the Mighty TN's behind you, certainly those good vibes will find their way to your infection and help clear it up. You have come so far, keep going!! ox

DiV, your news about the surgeon is just so shocking! Am very glad to hear that you have some new medical professionals advocating for your health. What an insensitive boob of a man. Sending healing thoughts your way as fast as they can go from Michigan to you. ox

CathyToo asked if anyone's Doctors offered prognosis or survival statistics. Mine has always been one to be positive, "You are going to live a LONG life!" One of the reasons I adore him so much; he is an optimist and very smart and very, very kind. Just what we all need to get through this. I used the survival calculator that has been posted on these boards. It showed a decrease in 4 years of life for me with this type of bc and I am now 57, so that takes me to 77 or so. I would be very happy with that but who knows what will really happen and that is what makes this so difficult to let go of and move forward.

My SIL had this cancer in 2005, before the medical community knew as much about how to treat it. It was in two spots in one breast and measured several centimeters with node involvement. She had lumpectomy. She was in a clinical trial then and is doing fine now, 11 years out. That is certainly encouraging news for all of us. She does not do anything much to maintain her health either, just is enjoying life and confident that she was treated appropriately. She has a very strong religious faith that has helped her as well. I will add that she does not know much about her bc status, she chose to have her husband manage it and just followed recommendations. It worked for her I guess, but we are on these boards for a reason, we are seeking knowledge which equates with some control over what is happening to us.

For now, I plan to fight as hard as possible and enjoy everything I possibly can. The initial shock has worn off a bit, yea! Since this is my second time at bat with this disease, I have first hand experience living with the dread. I wasted so much time worrying, it took the joy out of my life so decided to work very hard at letting that go last time as soon as possible when I was done with radiation. It felt so good to be done with treatment and I focused on doing all that I could to feel good. If it helped me live longer great, but what really happened is I just felt so much better overall and could stay more positive.

I lost some weight (was about 10 pounds over my ideal weight and felt very uncomfortable.) Eating well, ton's of exercise including yoga which helped my mental state incredibly. I made some wonderful friendships through my yoga and those friendships are helping me today as well. I highly recommend some sort of meditation for anyone who is feeling anxious. It might not work every time but it works most of the time for me. The trick is to keep at it for a few months. The first few times I was clueless and thought it was just the biggest waste of time. Then I met a woman in class who advised me to stick with it as it takes time to "get it." She was right. Maybe it is a cumulative effect like chemo and radiation?!?! The nice part is you can do this at anytime and anywhere. Just close your eyes and breathe. I did this last Monday during surgery prep and my BP was holding steady at 118/72 the entire time. When I got this second diagnosis it soared to 138/78 and would not budge for a couple of weeks! I kept at it though, breathing, meditating and yoga . . . I think women do not spend anywhere near enough time taking care of themselves. This is a form of self care and it is important for us to do everything we can for ourselves. Much easier said than done.

I hope everyone reading this post has a lovely Sunday and a peaceful week ahead. Back to work for me tomorrow and I find out more about chemotherapy this Friday at my check up. Anxious yes, but glad to put the screws to these nasty cells.

Anne

Kathy so sorry about your mom. Meadow, sending gentle hugs and hoping that infection leaves you soon. DIV I'm speechless about your breast surgeon. The scary part is he is so respected. Makes you wonder how many others he has just let die. Scary thoughts on that.

Grammasue you are at the most difficult part. hugs to you.

Cathytoo, my MO will not talk recurrence statistics. She told me it's because when she was teaching oncology at a major university she was so into statistics until she had so many get discouraged and not look for all possible for their patients because they were hung up on statistics. She told me with TN it tends to recur sooner rather than later, but you cannot live your life waiting for it to recur. She then said what does 'tend to' mean in real life?

I can admit my first time with BC 25 years ago, I had a few rough years when every cough, ache, pain I would run to the Dr. Time helped.

My prayers and thoughts are with Annie and her family

Hello to all

Val

Welcome, GrammaSue, I am glad you are here with us!

I know we are all concerned and somber, regarding our Annie. The news we hear of her health is distressing, to say the least. Mandy her daughter will update us with news we long to hear, or dread to the heart of us. As we wait for news, what would Annie do? She would want a distraction of some kind....and to share laughter. She is funny! So, in her honor, and to give ourselves a perk me up here in grey January, I am asking for you to share a bright spot....something cute, or funny that you saw, or that one of the grandkids said or did. This does not disrespect our Annie, let's do it to honor her and how hard she tries to make us feel good about ourselves, about life. Share something simple...I will start....my 6 year old granddaughter has lost her two front teeth....she says, "give me some S words to say", we go thru saying "salad" and "sunny ", and of course, "Sally sold sea shells down by the sea shore". Priceless.

Now your turn! And you lurkers chime in too...you know who you are! [Wink]

Oh Val! So cute!

Oh no! He did not! Lol

My MO talks to me about stats, and how each of the treatments can "buy" extra percentage points of reduced recurrence. The next one she is going to test me for is zometa. I don't expect to be a candidate for it, because I have good bone density.

My 3 year old niece was at our house for the last week. We were talking one day and she said "okay, Sweet Cakes!" LOL! Here we are on the slide at the playground.