Calling all TNs

Kraycee

Thank you so much for checking in! You have not only given me a bit of hope but you have confirmed that my sight issues are not as temporary as I was lead to believe they would be! Happy graduation!

Kraycee

HI everyone ,

I am 44, was diagnosed august 2014, 3C, mod. Radical bilat, 4 rnds AC, 4 Rnds Taxes and Neulasta for TX 1-7. At the time of my surgery they found that all the cancer was dead! TKO! Genetic testing revealed a gene mutation rendering me at very high risk of developing colon cancer (50-80% chance).

Laughter really is the best medicine,

Kraycee

Luvmydobies

Kraycee welcome to the forum! We wish you didn't have to be here but it's a great place to be. I'm sorry to hear about the colon cancer risk. At least you have a good sense of humor, it sounds like! I get so confused about genetic stuff because they told me when I was diagnosed to get the BRCA tests which I did and they were negative but I read some web sites that talk about other genetic tests. So, now I'm like should I ask about different ones to get done??! It's scary to think about! It's all a crapshoot anyway, I guess. Again welcome. XO

Meadow

Yes welcome!

Bunnybumps

Luv, I had a panel of tests that included 49 genes, including BRCAs. Getting results Tuesday. The tests that are recommended depend on your overall health and family medical history. I have a looooooottttt of autoimmune involvement in my family, had precancerous polyps in the colon, have 6 benign meningiomas, etc., etc. so there were loads of tests to perform. For all we know I could have lots of problems ahead, or they call be negative. Like our cancer treatment, genetic testing is so very individual.

Meadow

Kraycee, I got your message that you had accidently blocked me, but I cannot respond! The error message said, "not accepting private messages" so you will need to unblock that if you did it by accident. It happens!

BanR

2 issues in hand

1> cycles had stopped during chemo, it came back after 8 months and after 7 months stopped again...its been 3.5 mths, of no periods for me.

Oncologist is a little skeptical about hormonal supplements to bring it back. I was wondering what else can be done. What are the risks of such an early menopause ( i am 36). Does it increase the risk of other cancers or diseases?

2> Brca1 was negative and brca 2 had a mutation of unknown significance. She now wants me to get other genetic tests done mainly the p53. Appointment with genetic counsellor in a few days. Any pointers on what else to discuss about and ask for wen i go and meet her.

Thanks!

Luvmydobies

BanR, I'd honestly be happy if I never have another period again. I hate them but I also realize that if they came back and were regular the menopausal symptoms would go away. I have an appointment next Monday for my four month checkup and will talk to my Onc again. However before he's just been like there's no way to tell if the periods will come back and if they will be regular. They say to expect the unexpected and he will not let me take any kind of hormones. He's even against me using Estrogen cream too.

ALHusband

I understand some genetic tests. SOME. But I'm not sure I understand the ones they do where there really is no intervention that can be done anyway. My wife is BRCA2 positive, which I believe was truly a blessing to know. Because they were able to test for it...she could have a prophylactic mastectomy and a prophylactic oophorectomy since she was at an elevated risk for ovarian cancer as well. But are there others they do where there is no preventive intervention we can do anyway? For instance...if there were a Liver Cancer gene we could test for it...but what good would it be if we knew we had it? We can't intervene and remove our liver...can we? Is there a Bone cancer gene? We can't remove our skeletons...can we? My point is I believe there are some very useful genetic tests...but then are there others that simply cause stress, anxiety and worry. Am I off base?

Meadow

No Al, not off base. I am sure there are gene mutations for every cancer, and inherited conditions, don't you? We are just seeing the tip of the iceberg in genetics and how they relate to BC, which is so great as I feel like this brings us steps closer to finding a cure or at least finding more and even better treatment options. But I agree, not necessary for everyone to undergo the testing, at least not yet. Just my thoughts....

breastcancerhusband

BanR - did they say what the BRCA2 variant was? My wife had the same BRCA 1 normal and BRCA2 was a variant of unknown significance, but we got it checked out with the UK cancer database and it turns out its just a natural variant. If you are happy to share the genetics I'll try and dig around for you.

Alhusband - firstly I hope the wife is doing well! As a medical scientist I think the tests are important, it gives us more information. But as a patient (well husband of a patient) they can sometimes cause worry!

I hope everyone else is doing well or as well as can be expected.

Lady-miz - sending you tons and hugs and prayers from London UK

Tom

Jennagwyn

I'll be getting the Taxol biweekly, after i'm done with my 4 AC treatments:

Teka

Kraycee, welcome to the thread.

BanR

Thanks for replying back Luv, AL, Meadow and breastcancerhusband.....i dont remember the mutation off hand now, will check and let you know its exact name..thanks!

I might as well have to go sooner to meet my oncologist again. Feel an elongated hardness in the opposite breast. Have been feeling on an off hardness surprisingly in the non radiated breast but mammos were clear.

i need to investigate this one, although when i met with my onco just a few days back, she didnt seem to notice any.

Sometimes i get tired..since 2013 the drill began....diagnosis of cancer, surgery, chemo, rads, neuropathy, gynaec issues post chemo, cardiac issues post chemo, followed by menopause but the biggest being the sword of mets, recurrence or another cancer hanging on your head all the time..... becomes tough to think ahead at times but then pull myself up again, somehow got to live till my daughter grows up at least.

Thanks everyone for being around!

Luvmydobies

BanR, I sure hope the hardness you're feeling is just some kind of hormonal changes or something. Clear mammo is a good sign I would think! Please keep us posted. You're in my prayers! XOXO!! Post treatment is so hard because of the fear of the unknown and all the post treatment effects that you mentioned.I was 36 at diagnosis and it sucks because they always say you don't need a mammo before 40! I had regular gyno visits and did self exams but that wasn't enough obviously. By the time I felt it, it was already over 3 centimeters. Aargh!!! My four month checkup is Monday and my thoughts are all over the place. They always are when its close to time for a checkup though. I still think I'm too young to have to see an Oncologist but the fact is cancer does not discriminate and I think that no matter what age we are we all felt cheated when we were diagnosed. I love this board though. I'm so thankful for all of you fine ladies and gents!

Curlyq1974

I feel the strong urge to pipe up about the genetic testing.  Yes, currently there is nothing that can be done about liver cancer or bone cancer mutations.   But, there is currently research on going to develop vaccinations for those with mutations.  I know this only because I have the mutation, and my brother has the mutation.  My dear niece is only 10.  She has a 50% chance of carring the mutation as well.  At the Cleveland Clinic, they are researching a vaccination for TN.  I pray that all she has to worry about is getting her annual BC vaccination with a Flu shot!  Wouldn't that be wonderful!!!!  They have 10 years to figure it out for her....

Allydp

Kristi - I had a few opinions regarding rads and every one, except one, said no because of the negative nodes. The one hold out who wanted to do it changed his opinion once I had a complete response to chemo. It's hard to leave a treatment option on the table I know, but the current recommendation is no post BMX rads for those who are node negative with tumors <5cm.

BanR - so so sorry you're feeling the new thickening and having to go through the testing, fear and wait. I'm in the same boat right now.

Regarding gene mutations, I'm really with Curlyq on this one, but can definitely see your point too, AL. I tend to think it's best to get to the very bottom of exactly which variant you have regardless of current treatment options. They're constantly coming up with new targeted therapies and like Curly said, vaccines as well. And heaven forbid you have a recurrence, there's so many different studies out there. It could open up your options and options are never a bad thing.

Welcome to the new ladies here.

Cocker_Spaniel

Well so much for the NZ spring. One day of brilliant blue sky and a warm day and its been raining and cold since. On top of that I caught the flu from my beloved feller and have felt awful and don't seem to be able to shake it off. I badly need some sun. Can anyone send me some?

Welcome to all of the new ladies. This is a great site with plenty of support.

Michelle hope your pain is better and you have managed to get some reassurance from your doctor to put your mind at rest. Hugs.

Greenae hope that's all you did in the back of that station wagon (hold hands). Glad to hear you are back at work. The neuropathy may stay around for a while but it does seem to get a little better as time goes on. I still have it in two of my fingers and its sometimes hard to type.

Ally I don't know how you all cope with those insurance hassles. They all seem determined to make your lives harder even though you have paid in for it and don't need all the bull shit on top of everything else you are going through. In relation to your pain would it be similar to mine. I have had a pain in my left side (cancer side) that comes if I twist even just a little. It is extremely painful and lasts for about 30-50 seconds. It sure takes my breath away but I don't think its anything because I have had it for about a year now. It's just a pain in the butt when it comes and is so painful. Hope you can get some reassurance that yours is just part of the surgery and nothing else.

Bunnybumps (love the name) praying that all your tests are negative and keeping my fingers crossed for you.

BanR great to see you posting again. If you still have your ovaries you shouldn't be in menopause especially at your young age. If you ever have to have your ovaries removed you will go into instant menopause whatever your age but keep in mind that hormone replacement therapy is not a good idea as believe it or not it can cause breast cancer. Ironic really isn't it.

Shari glad to hear you are taking baby steps with the exercise and are beginning to feel better. Big hugs.

Jan I saw some mountains on fire on the TV but can't remember the place. It was in the USA though and really frightening. Would be hard to breath through that. Glad our NZ fire fighters are there to watch over you and keep you safe.

LUV I hope you have solved your housing problems at last and they are how you would like.

Hallo to all of our other ladies and hoping you are all keeping well. I'm off to take some more honey and lemon to shift this darn cold.

greenae

Hi Cocker

I wish I could send you our 90+ temps and September sun...it's Tooo Hot here!

I hope you're feeling better soon. When I was a kid, My Dad would drop some whiskey in with the tea, lemon and honey, to quiet the coughs. I thought it tasted awful, but it sure did put me to sleep.

Feel Better soon!

Arlene- yes, only hand-holding! Lol

Meadow

(((Cocker)))

Arlene we have been watching the US Open Tennis matches, and they are talking about the heat there!

anotherNYCGirl

Cocker, - I hope you feel better soon! Maybe you should try Arlene's dad's recipe!

Arlene, - hope you are able to get back into your work routine easily! This heat can't be helping. I would love light snow fall about now!

Allydp

My MRI was approved today!!! It's scheduled for the 15th, but I'm going to keep calling daily to try and get in sooner with a cancellation. My onc has never agreed to do a peer to peer...she always orders something else. So on one hand I'm glad she took the time to call, but it also makes me wonder if she's that overly concerned this time. I haven't been wearing a bra to relieve some of the pressure, which is helping both physically and mentally. I'm able to at least get my mind off of it without the constant reminder.

Luvmydobies

Cocker, hope you feel better soon!!

Ally, glad you got the MRI scheduled! I'm praying for you!

House stuff is still ongoing. I think we found a place to rent. We found a lot to buy on 3+ acres and will have a house built there. Not my ideal location but I'm ready to get everything settled. My nerves are so shot from everything lately and my Onc checkup looming on Monday! Every ache has me worried this week! I've been moving a stuff around here and at the Doberman rescue, and lifting some but I still worry the soreness is something worse. My cancer side is always the side that hurts! The underneath side of my right arm hurts and under my arm going down the side of my rib cage and I worry it's cancer or some sort of infection because of my fear of antibiotics from having the C Diff. Ugh! Will it ever end?!! Hah

greenae

Hi All

Back in the work routine. Wow, like I never left. Just wish my feetdidn't hurt so much, I have to walk a lot, and run up and down stairs. Anothernycgirl, I'm with you! I would love some cool weather and snow! I have left the house twice this week forgetting the wig. Ugh. Had to go back and get it...lol. When can I dye this white crewcut? It's making me feel old.

Ally, I am glAd you got your approval, and soon, some peace of mind. My first follow up is in mid-october, and I am trying hard to not think about it.

I am struggling in my head the past few days because an acquaintance with TN passed away this past weekend. She was first diagnosed 3 years ago. I don't know the details, but know she had brain cancer as well, first diagnosed one year ago. DH is good friends with her husband and he is saying the family told him it was not BC in her brain. Ugh. So sad. I am sorry to be down with this post. But it frightens me.

I am trying to get back to normal with work and life, but I feel this past 9 months has changed me so much.

Thank you all for being here.

Luv, I hope the move works out, and your pain and worries lessen.

Remembering 9/11, and all the heroes we lost that day. My DH was there as a First Responder, he has many health issues as a result...another event that changed our lives so drastically.

Hugs to All

PeggySull

TNBCat 37. I have same profile as you and I didn't need radiation. In fact, it was suggested that a plus to not having radiation with my profile was that if the ca returns (e.g., to the chest wall), not having radiation now would hold it in reserve (some lifetime limit of radiation).

My suggestion is to get two second opinions outside of your group, one radiologist and one oncologist. Or, If you can get your case presented to a BC board, that should be ideal. One of your docs needs to get you on the roster.

Until you get closure on this, I'm sorry you have to live in a state of uncertainty!

Hugs,

Peggy

Lisaj514

Arlene, my feet hurt too after chemo and it was bad for about 6 months, gradually improving and now 1 yr 4 mo after they still ache but much better. Not really neuropathy because they are not numb or tingling, just joint aches. Ihave to wear comfortable shoes or I can't function. Funny how you have breast cancer and your feet hurt, right. Seems crazy huh? If you are forgetting the wig you are probably ready to ditch it! I never dyed mine back brown, but mine came in a pretty (sort of) white and I'm keeping it but also feel old some days. When I get a hair cut I keep telling the hairdresser cut it but don't make me look like an old lady haircut. Gray is in, did you hear?! There's lots of suggestions about hair and dying it again on the hair thread, take a look if you haven't and ask. And in the meantime spike it up if it's long enough and wear awesome earrings and go out confident and strong! I got so many comliments when i started going without hats, scarves or wig it was crazy.

We are different after this experience. Acknowledge it and embrace it. A counselor at a women's cancer retreat I went to recently says try to not to think "why is this happening TO me and instead try , why is this happening FOR me". Try to come up with one thing. One thing for me I came up with is it happened for me so I can learn to appreciate and have gratitude for the little things in life and that has made my life richer

Re-9/11Thank you to your husband. I lost a brother in law that day.. He worked for an insurance company on the 100th floor

Meadow

Lisa so sorry for your loss that day,I am sure this day is a somber one for your family. It is for the nation, but so much more for you.

greenae

Thank you, Lisa

I am trying to learn from this experience. I am not at all, "Why me?" kinda more like, "What's going to go wrong next?" Lol. I am sorry to say I am a glass half empty person, but I try to find humor when I can.

I am optimistic that this neuropathy/pain/fasciitis will dissipate over time. Getting busy helps me forget BC, and Live. And I am not one to sit still.

My hair is so thin, it refuses to "spike." I would love to go for that Jaime Lee Curtis look...just need more hair. Yours looks Great! And I do see that gray hair is In!

I am sorry for the loss of your brother in law. That day took many friends and neighbors from my area. I am in Staten Island, NY, and we watched and waited in disbelief that day. ugh.

Thank you so muchfor your kind words and advice

Arlene

Cocker_Spaniel

Arlene it takes time and energy after BC to get back into the working world. I worked full time all the way through my treatment and some days I thought I would die with tiredness, not BC so try not to do too much too soon. I'm not a 'why me' person either because why not me, why some other poor bugger but I am a glass half empty person.

All my life I have had a phobia about vomiting and I thought the one thing the chemo would do is make me vomit so I was scared stiff. I wasn't sick once thank God but BC makes you sit up and think and makes you reassess your life so I suppose some good comes from having it. Because of the phobia it makes me understand other peoples fears and worries as well.

I think we all have the fear of waiting for the other shoe to drop and the fear never really goes away just comes a little less as time goes on. I fill my days with as much laughter as possible, seeing my grandchildren, meeting friends for lunch and I love animals such as the animal posts on facebook because animals and the funny things they get up to helps me to forget and to get through.

My hair also came in thinner, straight and grey and I wanted to look like Jamie Curtis as well but alas I look like me. My real hair was auburn with lovely waves before BC and no matter how often I have it cut it is never the same. You say you have hot weather then take off the darn wig and enjoy the freedom. I had one and only wore it once, far too itchy and didn't look like me. Take your time to smell the roses and you will come right. In your pocket with so many hugs its hard for me to fit in lol.

Lisaj514

Another jamie lee Curtis haircut admirer! I wonder is she knows that many Cancer survivors long to have her hairstyle, she is our role model for short, gray, cool hairstyle. Its been mentioned many times on the hair thread. Here's another hairstyle I longed for...and the color looks like your wig Arlene, maybe in 2-3 months!

I grew up on LI, commack. Living upstate ny now and that day was a nightmare and I felt numb and so helpless being far away. My brother in law grew up in northport and he, my sister and family lived in Kings park. Sorry for you also in the loss of your friends and neighbors. This is the memorial that is in Kings park with names of those from or living in Kings park that were lost. My borther in law is Rudy. That's my sister in the reflection of the stone taken today. Our country was changed on that day, similar to how our worlds personally were changed by our BC diagnosis.

Please do some random act of kindness this weekend in memory of those lost. Thank someone, help someone, make someone smile, because you can

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