Calling all TNs

Cocker_Spaniel

bak94 great news that your bloods are in the normal range.  With regards to stages if my oncologist had said stage 1 or 2,  I would have thought oh well I can get through this but when she said stage 3a I went totally numb.  That is the thing that frightened me more than anything and still does.  When I have those 'what if days' and wonder whether I will recur or not I always think of that bloody stage 3a and it won't go away.  But I think you are doing marvellously and I really don't think you need to worry.  You are three years out and that is wonderful. 

I do hope you find the meditation tape. I don't think diet or exercise has anything to do with anyone getting cancer although obviously the better  they are the more healthy for you, I believe it's stress.  So many ladies on here suffered some sort of stress pre cancer including myself and I think meditation will help enormously. Stress is a real killer on your immune system and I don't think we realize the enormous problems it causes with our bodies so I guess meditation, laughing as much as you can,  talking your problem over with a good friend or a professional, reading a good book, sitting on the beach with nothing on your mind but the sun and sea or anything else that will help you chill out will help us a lot more than anything else.     

I do hope you can get a photo put up with the ducks and also Romi.  I've been trying to get one on of Chloe for some time but having trouble doing it.     

Cocker_Spaniel

Just a question,  but does anybody on here suffer with high cholesterol.  

FierceBluebird

Bak94, I have an Indian runner named Captain Toast.  Lol,...my son named her.

journey4life

Congrats bak94! I sometimes wonder if I'll ever truly celebrate a clean scan or good markers. I'm in the stage of thinking "what's there that they can't see"...

Cocker - I had high cholesterol but can keep it under control with meds. 

Good morning ladies!

Allydp

Kathy - I read your post soon after it came through and I can't tell you how much I appreciate your kind words about my attitude and reassurance that one day cancer won't be consuming my every thought. With the BRCA2 news, I also learned that only a total hysterectomy will decrease my chances completely for ovarian cancer. It's tough news for me as you all know how badly we want children. Anyway, my point is, your message came through at such a nice time and really lifted my spirits. So thank you! I had a few good cries over the last couple days and am feeling much, much better. Ready to tackle some tough decisions.  I am so very sorry to hear about your neighbor. My heart goes out to his family having to deal with his sudden death. But yes, as others have said, it's such a reminder to live life to the fullest each and every day. Exactly what I hope to do once I kick this thing to the curb. Thanks again and wishing you all the very best. 

On the subject of head shaving…I also threw a party and made the act as fun and memorable as possible. I invited just a few of my closest friends and family for the actual buzz, but then had a big group of friends come over afterwards and did a big reveal. It turned out to be one of the funnest, most memorable days of my life. My husband surprised me and had my makeup done in the morning. And one of our friends happened to be in town from California and surprised me by showing up with flowers, which really added to the memories. Also, one of my friend's hobbies is photography and he offerred to come shoot some pics. I was blown away by his talent and so grateful to have the event so beautifully documented. After such an experience, I'm heavily considering starting a local charity where cancer patients can turn their crappy hair loss into a fun party. I know things like this already exist on a larger scale, but I'd love to keep mine small and local. We called my party Buzz Bash Against Cancer and I'd like to keep the name for my charity. I'm not sure if it's appropriate for me to post this link (let me know and I will gladly remove it), but here's a slideshow we put together from the day. I wish we got more pics of the after party, but we were too busy having fun! 

http://youtu.be/He2RJb7yYeY

Allydp

Bak94, congrats! That is wonderful news! 

LRM216

Bak:  Glad to hear of your results being good!  That's great news, and thank you for the congrats. Don't post as much, but I am always up to date on how everyone's doing.  I care greatly.  

To all those just joining us, I wish safe, uneventful journeys with wonderful success and to those having to go back to battle, my thoughts and prayers for continued strength in attaining the good results we all pray for.

Linda

bak94

Allydp-I am brca 1 positive. I did have a full hysterectomy also. One good thing about being brca pos is that typically we respond very well to chemo:)

InspiredbyDolce

BAK - congrats on your excellent check up and for the graduation to 6-month intervals!

I also agree with what Cocker said ... you are doing so well that it may be counter-productive to start worrying at this point.  There seem to be no indications that you will have to face this again, and I would keep reminding myself about the pCR.  But given the fact you had a recurrence, I know this crosses your mind, as it crosses all of our minds.  To answer your question, I do know of 2 people who were stage 3c and this is what I know.  One is that lady I talked about here ... dx'd with 1.5cm tumor, and was 6cm before surgery3 weeks later and 11/13 nodes positive.  Last summer she celebrated 10 years cancer free! In her case, she had surgery first.  A second lady, housekeeper at my gym,  was also stage 3c.  She had a lumpectomy with no other treatment and it returned in 6 months the size of a golfball and a few nodes affected. She had radiation only and is now celebrating 5 years this year.

For other cases, can you do a search in the search field by typing in:  stage3, ER-, PR-, HER2- 

I have found that some people don't put the (a,b,c,) after their stage, so you might have to first find those who are stage3.  In the meantime, I do have these folks you can read their profile and send them a PM just to check. 

I do realize these are both 3B, but wanted to include them in case they were similar enough to your experience - it looks like HairSprayMom had some extra concerning factors as well, being on the chest wall and she is at 6.5 years out now.

CinnamonRocket - 9 year survivor! stage 3B

HairSprayMom - 6.5 year survivor!  Dx 9/2007, 3b (with a 1cm and 2 cm tumor on the chest wall)

InspiredbyDolce

Hi Everyone - I just wanted to say hello and wish you all a great weekend, and to anyone going through treatment to remind you to put yourself first and try to let others help you a little!    Also, to all the lurkers out there, I wanted to make sure you all know how much you are welcomed here, and to feel free to stop by and say hello.

CatWhispurrer

Bak - still waiting for Her2 status of lung biopsy - it was supposed to be done by last Tuesday UGH!   I was initially Her2 2+ but still my onc says that you cannot get herceptin unless actually classified as positive and insurance wouldn't pay for it.  I wish I could take it from everything I have read about it. 

InspiredbyDolce

Cat, 

Have you considered having your HER2 status tested at a separate lab? 

My Onc tested the HER2 at two separate labs using the same technology, and then it was also tested a third time through Genomic Health / Oncotype DX.  My paperwork of the 1st 2 labs indicated that negative range for HER2 is 0 and 1+ of which I was 1+.  The Oncotype DX test will also deliver a variable for HER2 score, based on a number of units.  For Oncotype DX, using the HercapTest, the referenced units to qualify for an HER2 positivity is equal or greater than 11.5 units.  Oncotype DX classified me as HER2 negative, because I was 7.6 with their technology.  Having the extra confirmation was essential for me, to know that I was receiving the best recommended treatment.

In this link (from bc.org) it shows a result of 2+ as being borderline.  With a borderline result, you may want to try another type of HER2 test for more clarity.

http://www.breastcancer.org/symptoms/diagnosis/her2

Excerpt from the above reference article:  "An IHC 2+ test result is called borderline. If you have an IHC 2+ result, ask to have the tissue retested with a more precise HER2 test: the FISH test, SPoT-Light HER2 CISH test, or the Inform HER2 Dual ISH test."

Having a second lab or test confirm your results may be very beneficial, especially in your case where you would like to take a specific drug.

I will be thinking of you this week!

CatWhispurrer

Bak - They did 2 different tests the first time from one lab (borderline/equivocal) so I did ask them to test it again, and it came back negative from the second lab  -Clarion in CA.   The lung biopsy is being done by Clarion again so will be interesting to see if it changed from my breast biopsy.

Thanks for everyone in my pocket and thinking of me.  It will be another rough week.   I am still coughing up a little blood from my lung biopsy but they said that it can last 2 weeks!  Yikes!

InspiredbyDolce

A second lab may not yield new information if using the same technology.  Perhaps find out what type of test was administered, and then check to see if they can send slides to a facility that specializes in a different HER2 test. The FISH test seems to be the standard at the labs, but the article referenced the following other types of test:  SPoT-Light HER2 CISH test, or the Inform HER2 Dual ISH test.  You may still be able to work off the information that is currently known (meaning no delay in treatment) but still have it forwarded to a lab that specializes in one of these other tests - just in case it finds you HER2+ to get you the medicine you preferred.  I've read in another article I found this morning, that some Oncs see a benefit of the drug you mentioned with an HER1+ status.

Oh Cat, your recovery from the biopsy sounds rough.  How are you feeling otherwise?

slv58

Allydp, I just watched your video, it was beautifully done and you are beautiful! It sure brought back memories of my head shaving bash! My bf offered to shave my head when I proclaimed that I was going to take my hair-not cancer. My MO approved me sharing a bottle of champagne (that my dh and I had left over for New Years-we were awaiting the news and didn't feel like celebrating) and I see that same look in your eye that I had with that first pass of the clipper. It is a combination of utter determination to get some control mixed with sadness of what was and a touch of fear. We all go through it I know your attitude will greatly help you through this journey. I love your idea for a charity to help women turn what could be a negative into a positive! I also started a "positive affirmation" board that is in my bathroom right next to the mirror, I have pinned notes that inspire me onto it and invite others to contribute. Keep smiling, accept your down days and celebrate every chance you can!

Titan

Hey everyone!

Sylvia..thanks so much for "stopping" over....really appreciate your kind words and your informative posts on the UK thread....and awesome to hear you are over 8 years out....

Bak....great...great...news...my heart feels so good to hear your news...you have been through alot of ***S8**.

re:  the hair thing...I just let my hair fall out...big mistake..should have had a hair shaving party but it wasn't for me at the time...would have been the right thing to do though.....and about the support...well...my husband never really asked and I never encouraged it...he has big ears..and wouldn't have looked very good bald....lol....I never went "out" bald anyway so not sure how much it would have meant anyway....didn't go bald at home much either...didn't want to freak out the kids..my son was pretty shaken up by the whole thing...I needed to protect him as much as I could..that's what a mom does..

I was reading our local paper and there was an article about abortion and breast cancer..."they" say that women that have had abortions have a higher risk of breast cancer...really????? That article really pissed me off to say the least...I have never had an abortion but even if I did I would have a hard time believing that it would cause breast cancer...just another way to blame "us" for getting cancer...

Titan

Linda..I wish there was a way to "like" your posts.....

lisadi1963

Hi all. It's been a while since I've been on the boards. I've been cancer free for 2 years? I have noticed some brown freckles on my nipple of the breast I had my lumpectomy and radiation on. Is that normal or should I have it looked at? Thanks for the feed back! Lisa

TifJ

Titan- like you, I never went around bald! My son was 8 then and he asked me to always wear a hat in the house and my wig when I went out. He thought if he saw me bald it would make me look sick and he was so afraid. I wanted the kids to keep going on about their usual lives. My daughter was only 5 so she really didn't understand what was going on. She is 8 now and doesn't even remember that time! I think my own vanity played a part as well. I just didn't want to go around town (a very small town) and have everyone I ran into give me the "pity" look. I had my husband shave my head in the bathroom- I cried.

simplelife4real

Cat, I'm sorry you are having to wait so long for the lung biopsy.  It seems like weekends and holidays come at the worst times when waiting for biopsies.  

I am still in the bald stage and will be for at least another month (or two or three).  I always wore a cap in the beginning even at home because it was the middle of winter and I was cold.  Now, I am usually topless at home even at night while I'm sleeping, but I haven't been that way out in public yet.  I wouldn't mind being topless in public, but my hair is grown in really patchy in terms of color.  I have a spot in the front on one side of my head that is shaped like a triangle and it's solid white....it makes it look like I'm still bald there.  The rest is a combo of dark and white/grey.   I don't like using chemicals, but I'm sure I'm going to do something with this hair color as soon as there is enough to color.

See what I mean?  I looks even stranger in real life than it does in person.

Allydp

Bak - thanks.

Cat - sending you thoughts and prayers for a fast recovery from your biopsy, and also clear results. 

Slv58, thank you so much for the nice compliment and your kind words. I love your photo. You are right. It's that same look of determination mixed in with all those other emotions. I absolutely love your positive inspiration board idea in the bathroom. What a great way to start your day every morning! Thanks too for what you said about accepting the down days. I have a hard time doing that and tend to beat myself up for it, but I'm really trying to learn to just go with it and accept it as part of the grieving and acceptance process. 

Simplelife - I've read a lot of accounts of people's hair coming in white and eventually gaining back its pigment over time. Hopefully your fills in soon! I'm like you, I usually always wear a cap except at night. My hair is just starting to fall out, but it seems like it will take forever for me to go completely bald. My lashes and brows are still going strong though. Not looking forward to losing those. Your brows look full, which gives me hope that they'll either not fall out completely or come back in fairly quickly. 

Hope everyone is having a nice, relaxing weekend. 

FierceBluebird

Mine did exactly that. Came in almost clear. Then pure white. Then turned blondish.  And has gradually gotten darker. So now I have the crazy curly perm look with blonde highlights. All thanks to chemo. 

There is a shampoo rinse you can use to even out the color if it bothers you. Not a dye, but a temp rinse. 

Anonymous

Hello to all of you! I've been a "visitor" here for quite some time as well as other boards.  While I'm close to my 2 year "Cancerversary", I still feel as if I'm in the middle of the fight.  Recently, I've started experiencing a great deal of anxiety fearing a recurrence.  I have a strong family history...Great-grandmother, grandmother, and even lost my own mother at the age of 49.  I am 43 now and while I know God's plan is perfect....and my head tells me that faith has no place for fear....My heart argues.
Throughout all the tests, surgeries, and chemo....I had a HUGE support system of family and friends.  And while I could still call upon them for virtually anything....I feel stupid doing so now.  I should be celebrating my cancer freedom, instead of questioning it.  Survivorship is a lonely place....which is why I've decided to join in here.  I've maintained a blog of my journey from the very beginning....working through each of my feelings. I've received much comfort from that....but I guess its nice to come here and know I'm not alone.  Thank you for the site and look forward to joining in with you all.
Blessings.... 

Allydp

SportsMomma, while I'm very new here and not yet a survivor, I wanted to say welcome and congratulations on being cancer free. I've often said that, for me, the battle is the "easy" part, and that living as a survivor without fear will be the most difficult part of this journey - so I can relate very much to what you're feeling. Sending you many blessings and well wishes. 

I had quite a big appointment with my onc this morning. I did some research over the weekend and learned that carbo has shown to be promising in not only those with TNBC, but those who are also BRCA+. My onc agreed to add it in. On one hand, this is what I wanted and I'm glad, but on the other, I'm a little nervous about what I might have just done to myself. I've tolerated AC really well so far. I just hope I'm not begging for trouble as far as toxicity levels go. Also, until I have an oophorectomy, I'll be closely monitored for ovarian cancer. She ordered a pelvic ultrasound and CA-125 test. Although she doesn't think anything is going to pop up, especially since my PET/CT/MRI were normal, I'm still anxious. I've had some ovary pain that I chalked up to the IVF's we did in 2013. On top of that, she went over my recurrence rates for not only a local recurrence, but a distant metastases as well, specifically brain or lung. The number has totally thrown me. I told my husband that the only way I know how to get past that number is to somewhat accept the fact that it could happen…that if my time is up, it's up. Not sure if that's the best way to feel. I did get some good news today. My tumor has officially shrunk! She measured around 3 cm at diagnosis and was getting around 2 cm today. She said that was good considering I'm not even to the Taxol yet, which apparently is when it starts to really go down. While I'm thanking God and beyond relieved, I'm having a hard time not dwelling on everything else that came at me today. I've had a bit of a rough time ever since the BRCA results actually. It's just a lot to take in.

Cocker_Spaniel

Allydp you say you are not yet a survivor, I believe you are.  You became a survivor as soon as your plan was put into place and was ready to go into battle or you wouldn't have gone through any treatment.  All the time you are battling you are surviving.  You also have your fertility issues to go through as well.  I personally think you are a very brave survivor just as all the ladies on here are. Great news that your tumor has started to shrink.  Cyber hug sent.

SportsMomma a big welcome to you.  We all go through the anxiety of recurrence and this is very normal some days are worse than others but they do get fewer and fewer.  Glad you had such excellent support but I'm sure those people won't mind in the least if you call on them and let them know how you feel or come on here and vent your feelings.  None of us can go through the doubt, fear and anxiety of cancer and then expect it all to go away just because we have chemo.  Try and do something for you today that you enjoy doing.  As a friend used to say "don't let fear rob you of the joys of today".  Sending big hugs and hope for a gentle calm day.     

gillyone

Bak - congrats on doing so well. To answer your question, I am/was stage IIIc but believe everything was removed surgically. My tumor was very close to the surface and I think all my lymph nodes were axillary, no problem with others. Though to be honest, I did not read my pathology report too carefully. It was too scary. The unexpected IIIc staging after surgery and reading about "extracapsular extension" and huge lymph nodes bursting with cancer, I put it away and have not looked since. I decided all that info was only useful for a tx plan and I had "the works" at that time - DD AC/T and rads.

Cocker_Spaniel

Gillyone same as you here encapsulated lymph nodes.  As you did,  I put mine away and put my trust in my excellent surgeon who ensured me he had it all, which I believe.  He was excellent and I wouldn't want to go to anyone else.     

CatWhispurrer

Her2 results on lung biopsy came back neg also, so now we can go ahead with clinical trial.   I got my port put in today and am very sore, but feel invigorated at the same time because now my fighting gloves are on and am ready to go, if that makes any sense (maybe its the pain drugs)!    Thankfully, my lung didn't get knicked this time.

Thank you again everyone for your support.

simplelife4real

Cat, glad to hear your her2 results are back and you can get going with your chemo.  Also good to hear the port placement went okay today.  Enjoy those pain meds!

Cocker_Spaniel

Cat ok girl put those boxing gloves on and kick that frecken cancer to the kerb once and for all.  Hopefully the port will only be sore for a day or two as mine was. We are all doing it with you. Yay for non knicked lungs.  Big cyber hugs. xx