Breast lumps

Hi JPB,

Hell does exist and I'm in it.

Feeling a bit more panicked today, probably because of reading that only 20-25% of breast cancer diagnoses have the HER2 gene. Mine was positive for it, lucky me . This gene makes reoccurrence/metastasis more likely. Sounds like oncologists are treating HER2 with Herceptin. I don't know if HER2 can have a strong positive or is graded; my estrogen receptors were weak. So I'm thinking if I make it past 1-2 years I'll be doing good according to the stats. There is a vaccine (Science Daily) that I read online dated April 13, 08 that says 'A HER2 peptide E75 vaccine reducted mortality in patients with HER2 positive breast cancer by half'. Still my chances are less than favourable because of this damn gene.

Anyone out there who had HER2 treatment and are still around after 5 years? I'd sure like to hear from someone.

I'm involved in an organization that provides educational workshops to deaf women in the area, and we invited someone to come speak about breast cancer. I'm interested because I have a family history (my grandfather had it) and was also just there as a workshop organizer.

The speaker was AMAZING, really good at explaining things, technical and accurate without being overwhelming.

She talked about a local breast cancer survivor support group that she started -- they provide these wonderful gift baskets to people who have been diagnosed, and welcome them and provide all kinds of been-there-done-that advice. I wonder if there is something similar in your area? Maybe ask your doctor, or Google...

Best of luck.

Hi jespah,

I'm sorry to hear your relative is going through this again and I wish them the very best outcome.

There are a lot of clinical trials going on for sure. Does your relative have the HER2 gene? Can you find out? What caused the reoccurrence of your relatives cancer, or do they know? I'm assuming it's breast cancer?

Trying to just breathe
Bathsheba
Dianne

Bathsheba, I've read up by now and am trying to understand what's going on with you. I'll keep on reading with the rest of you.

Hugs and positive vices to you.

Kris

breathing is good, Dianne. Nothing to do for now except take good care of yourself, Breathe, try to get as much knowledge as you can (information overload isn't necessarily a good thing), breathe some more, wait and worry, breathe again, get some support from as many sources as you can, and keep breathing!

Yes, I added worry in that list -- there's no denying that worry is going to be part of your wait. BUT, it's a negative energy and, as hard as it is to put it aside, the more of your energies that you can put towards positive endeavors and future outlook the better off you will be, both emotionally and physically.

It's all new news and waiting for next steps and new info is hell, but try as best you can to keep the worry part from taking over your day.

b-r-e-a-t-h-e

slowly and deeply.

Hi Dianne,

My relative actually has Hodgkin's Lymphoma. My family's (mother, me, maternal aunt, maternal female first cousin) been tested for both breast cancer genes (we're part of a study being followed on Long Island) but that did not prevent a maternal relative from getting breast cancer maybe 15 - 20 years ago. That relative (different person) is cancer-free and over 80 years old now.

Hi you all,

I have an appointment with the oncologist Sept 5 and at that point I can ask him the tons of questions I have compiled for him. I've also connected with the BC Cancer Agency and they have put me in touch with another woman who has the same Grade 3, HER2 positive gene breast cancer. She will call tonight. I think just chatting with someone who has been through this and is doing ok for a year now will help me be more positive. I do realize that being positive is better mentally/emotionally and physically. It's just extremely hard to maintain that attitude all of the time. It's hard to see tears in my husband's eyes - a guy who doesn't cry easily. I have cried more in the last month than ever in my life - how can the body make so many tears? I worry that this stress will do something to where I had my aneurysm fixed. Geez I'm a mess. I never smoked or drank in my life and always tried to eat right. How could these things happen?

Some things that bother me are the fact that I might not make it and have to leave my hubby alone. That thought terrifies both of us. The other is that my daughter has only me. Her dad and I divorced when she was about a year old and she has never seen the guy since...he's a real jerk but that's a different story. She's trying to get through nursing school and waiting to get in. I have to be there for her financially and don't want her worrying about me while she has to do the grueling RN course that will take about 2 years. She may not even get in for another few years in Calif. She has no brothers or sisters and isn't close to her 2 cousins in Calif (they're guys). She isn't close to her family (her dad's people) on the east coast for a lot of reasons. I know my hubby would be there for her, and she loves him, but she has a hard time asking for anything and I know she'd do without before she asked him for a thing. We married when she was 15 so it's not like she's grown up with him. She sounded like a little kid on the phone yesterday talking to me. She's so afraid of losing her mom. She's 32 years old and is pretty independent (altho has a fiance) but your child is always just that - your child. If she had a huge family support system I'd feel better, but she doesn't - just friends.

How do I manage to be positive when there are so many negatives? How does one face breast cancer without fear? Why does life hand some people so much crap to deal with? I have had more than my share and need lady luck for once. Just once. I just want a fighting chance to be around in the next 15-20 years.
Dianne
Bathsheba

I'm so sorry about your relative, jespah. How are they doing?

Pretty amazing about your other relative getting breast cancer so long ago and doing so well. Do you know anything about what type it was? Invasive? Did she have radiation and chemo?

Thanks for sharing your story. Being part of a study must be interesting. How long do they follow you?

Dianne
Bathsheba

hugs, my friend.

Bad things happen to people, (good things, too)

Rocky

(deep breathing is ALWAYS good)

The study's been following us for a few years (I recall I sent in my blood work some time while we were already living here, and we've been living here in Mass. since '95. I'm guessing it's been 5 years so far but I'm not sure).

I dunno what my aunt had, in terms of specifics. I think she had surgery but again I'm unsure.

My relative is actually doing rather well, better than the last time around. Hair is thinning a bit but not gone like it was last time. Energy seems to be better, enough to do mild exercise, whereas four years ago that was really not possible. My relative takes a lot of care to assure that colds, etc. are kept far, far away, because if you have a bad cold you have to miss a chemo session. Chemo may suck, but cancer sucks a lot more. So you don't want to miss chemo (for this person it's every other week, infusions through a port). This also means that anyone who can come in contact with this person has to get a flu shot every year, etc. I spoke with this person yesterday and they were chipper and laughing at my jokes.

I understand what you mean about having trouble with the emotions and right now it's all got to be overwhelming. But there can be humor, too. Even in the face of cancer.

Pulling up a reclining sofa....reading up.... meantime - holding out a hand... x

Tuppence worth…

First up….. hugs to you girl. Yep, it’s crap, yep , it’s hard, yep, it is the way it is. No, you don’t deserve it, no-one does " young, old, good, bad… but it happens…. As Forrest Gump would say!

Mmmmmmmm

Thinking…..

Have read this whole thread now and…. firstly, the very first thing I see " is " change of mindset needs to kick in hunni " easy to say, hard to do " but you can do it. I know you can.


There are many beautiful things in life, things you have experienced and things you have yet to experience. It is unfortunate to be sick…. moreso to be sick often…. But you are a fighter " and you can do this. Really " you can Dianne.

You seem like a go getter " you raised your child for many years on your own, helped build your house including breaking your wrists and then learned to use a drill (nothing like a good power tool in your hand a?), you walk with your dogs (good for the soul), you moved to a new country (nice one too), you were a school secretary " hey, YOU COULD BE ME!!!!! So…. Now this thing is here " yep, the Big C…. the B8stid disease which you don’t want and it’s in your body " and “NOPE” " our boobs were not for the purpose of harbouring nasty entities " but, those lumps are there " well now, get those sh!t kicking boots on that you offered our Boomer - and kick that negative energy into touch as best you can by fighting it with everything you’ve got in you. And heck girl " you gotta bunch of sh!t kicking girls and boys here with you to help you along…. (Gustav even has a pitchfork!!!!)

Thing is, all the the feelings you have " they won’t go away, you will still be scared, you will still worry about the future, you will still feel sick and weary, not sleep, cry and ramble incoherently " that’s fine " it’s normal, it’s human " but to get thru this " you need some super human strength and no-one can give you that " that comes from within " you do have it in you " you’ve done it before " you survived an anneurysm " you have to “believe” you will survive this too. And keep talking to get the negative and scary thoughts out of your head, and make room for some happy and positive thoughts…. they really wanna visit with you again.


So do this to the disease… pack a wallop to it and try to beat it….

As for walloping the surgeon and consultants… well, these people can save your life. You know, it’s better they don’t have the “heart” (tho a nice bedside manner is certainly preferable) " but if they get emotional and be less formal " perhaps they will not do their important work so well " the important work being getting shot of this disease. Yep, manners maketh man and all that (you need a surgeon/oncologist, not a man)" and it would be good if they would hold your hand as well as the knife…. But right now… focus your fight on anything negative…. Make your anger beat up those feelings…. Just let the surgeon etc (ppppffpfpfststtsttftt uncaring and unsoothing as they may be) do their stuff to get rid of those lumps. Keep talking with the GP.




Telling people over the phone, whether benign or not… it is better to look at the person’s face so that you understand, no misinterpretation. I know… you want the answers " no-one can blame you for that " waiting it the hardest always…. Being able to deal with it, that’s easier than waiting.



Forrest Gump ran…. His Momma also said “Life is like a Box Of Chocolates " you never know what you’re gonna get” " you got one of those chewy bitter ones right now that lasts a little longer, with a tough nut in the middle to crack - …. So keep on chewing, try and make it taste a little better, you can’t spit it out…. that would be rude…. you gotta just get on with it….(please Gus, Kicky, Slappy do not be reading this), then you can move on to a nice sweet one. You’ve got a never-ending supply of chocs hun " lotsa nice ones to look forward to.



Nope " he ‘aint gonna push you around " get a list of questions, then another list of all the questions you forgot last time…. Ask hubby and daughter if they have any questions. Always ask questions from the people who can give you the answers " the oncologist can do that " he cannot be emotional.




It’s hard to feel peace… or happy about anything " you can only feel what you can feel " you have to do that and it’s alright to do that… you are not whining, nor pathetic…. you are scared. You need to find a place to put that fear so that you can focus forward…. You are doing that by writing it down… keep writing it down… gradually you will find things that will help you deal with/overcome the fears " they may only be little… but look….

you did that already…. BRILLIANT… you can laugh still…. You will laugh still…. And you will feel peace and happiness again " maybe in the most unlikeliest of ways " but it’s out there… you have to let it come to you and accept it.







Sometimes friends are easier to talk to than family… sometimes strangers are. Your daughter doesn’t need a huge family to feel loved and taken care of… and hunni " you haven’t gone anywhere. Live for today " give your daughter less fear….. be as positive as you can…. that is what you can do for her and hubby now…. She is your baby " no matter how old " you are going to worry for her, as she is worrying for you…. try and take her fear away " bolster her independence, plan the future….. she’s got a fiancée " therefore a marriage in the making…plans before nursing school - show her the way forward….. same goes for hubby. Get online here " tell us your fears, kick, scream, cry and be angry here…. talk with your daughter and hubby " you don’t need to pretend with them, you do need to be honest and you don’t have to always be strong with them " but you also need to give them strength too sometimes " you have the inner strength " we all do when it comes to caring about our kids " you have a “strength” face…. they need to see that to be able to cope, and to be able to help you too.



You have a fighting chance girlie. Start fighting.

Huge but gentle hugs to you… and love from the UK. xox




Mindset… my Aunt had breast cancer…. She is a survivor
One of my closest friends " “B” " I have talked about her here before " she has had 3 surgeries " the last being a double mastectomy " all within 6 months " she is a survivor " we do the “Race 4 Life” together " side by side.

You have to believe you will survive this.

Tie-up the boots girl and start to kick the Big C in the ass…. YOU CAN DO THIS DIANNE!





PS. Boomer… hugs to you too girlie… know the warzone is hell on earth… hoping you can spend time with Bro before he goes.


PPS…. Incoherent rambling and feeling sick and tired is good here… these folk are good with deciperhing incoherence and wanton rambling…. Believe me girl… I’m an expert rambler! Can you tell!!!!

PPSS Sorry if I have overstepped the mark here… I just got one of those faces on today.

K " GONE!

No, Bathsheba, none of my lymph nodes had been affected. The sentinal is the first node they biopsy, and if it is not affected, none of the others are. (Or so I remember, don't trust me on that.)
My pathology samples (not right word, I suppose) were too small to be absolutely sure about being negative on HE and Estrogen receptors. I must have known about the grade as well as the stage, but don't remember it.

My acquaintance who had stage four had a stem cell transplant about ten years ago. She's fine now. The friends with stage three (chemo/rads) are fine more than five years later.
I had another friend - who has since died of other causes - who had a double mastectomy and was fine for twenty plus years before getting an entirely different type of cancer. She told me that at the time of the mastectomy she didn't tell anyone but her husband about it. Talk about private.. and a kind of private courage.

I will say that in my own situation I did tell my close friends - who were a great help - and my business partner. I didn't tell anyone else involved with our business, any of our clients, or any of the artists who showed with our gallery. I didn't want to deal with consequent "how are you doing?"s all the time/every time. For me that was the right decision.

I'm also not remembering if they just look at the sentinal node for whether dye has gone there, or whether they biopsy it or take it out. (Funny what one forgets).

Just reading up, Dianne, & I'm sorry to hear about your diagnosis. But like you said you're a fighter. We're here for support. Glad some of you have knowledge in the field. That always helps, that and a positive attitude. You can get through this, and with a lot of help, you will!

Pulled out the knitting needles again the other night - thought of you, Bathsheba.

Not sure what I'm knitting yet, but I'm knitting - and sending you positive thoughts over the prairies and mountains.

checking in -- how are you today, Dianne?

Good question, JPB.

I'll second that, littlek!

Hi all you wonderful people,

I had surgery on Sept. 9. Double mastectomy so am in a bit of discomfort.

My daughter is arriving any minute from the States so I'm excited! It's been 4 months since I've seen her.

I just wanted to let you know I'm still here and trying to stay positive- what other way is there? I do think being positive can affect the chemicals in one's body....?

Thanks for your encouraging words. I'll try to post again when I get the results of the surgery - from the lymph nodes - which will tell how many are bad. I'm hoping for none or less than 3. That will determine how long I will be getting chemo. I have only one drain left in place (I call it my Gucchi bag) got the other 2 drains out today. Got out of the hosp. yesterday.

I am not sure how my husband is coping. I can't get him to talk much about it. He says he feels sad for me and doesn't care whether I have boobs or not as long as I'm alive.....but unless I bring it up he won't talk about what's coming, like chemo. This is hard on a marriage. Damn. I'm sure he'd prefer a woman with boobs. I feel so disfigured. Guess that will take second place to chemo concerns, huh?

Yes, I'm strong and a fighter but I'm battle weary. Too many wars in a short period and I worry about how my body will handle the poison of chemo.

Ok. My whine and cheese period is over for now. Take care everyone, god bless and I'll be in touch when I can,

Diann