Calling all TNs

PeggySull

Gramo, I had a little higher PR positive in one of my four tumors when they were biopsied after mastectomies.  Talked to two oncologists and for different reasons both said the potential benefit was "probably" not worth the side effects of the hormonal.  Said I could think about it and even if I decided now not to go on one I could change my mind later.  So far (6 months since these conversations) I've opted not to.  Mixed feelings about this...hope I'm making the right decision.

Hugs,

Peggy

tekwriter

Gramof2Boys my results came back borderline on HER2 and my MO is planning to treat me as positive on the HER2 with targeted therapy because he feels it was more positive than negative.

TifJ

Peggy, I feel the same way regarding an anti-hormonal- mixed feelings! On one hand I'm glad I am not taking because I hear side effects can be rough, but on the other will it negatively effect me later if I don't take one!! Cancer makes me crazy with all the "what ifs"!!

kathyrnn

Texwriter - I am sitting this morning looking at the mess that has accumulated because I was to worn out during chemo to worry about cleaning.  (I kid you not.  I'm afraid to look under the bed.  I know there's no dust bunnies because the coyotes bred and ate them!!!)

I just want to remind everyone that the American Cancer Society does provide housekeeping services to people going through treatment. (I don't remember exactly but I think it was 3 hours a week).  

It's a resource we need to keep in mind and to remind our sisters that it's out there for those who need it.

BanR

hi all

logged in after many days. 6 chemos done and 2 left

read almost all the posts i missed. sending love and hugs to all of you.

TifJ, Tek, Gram and Peggy .. even i have the same query. I have hormonal component 15 percent. My Mo will repeat the test and if it still comes the same he will put me in Tamox.

But my Her2 score was +2( borderline) in IHC ( post surgery). They did a FISH and it came negative.  What does it mean? does it mean some of my cells in the tumor were her2 positive, which will remain untreated. I finished 4 acs and 2 taxols. I guess its too late to have this query. 

Jianchi

BanR how are you feeling?  I had my second Taxol and so far feeling normal.  Sending good thoughts to your way.

Hope everybody else is doing well also.  

TifJ

Jianchi- I hope this treatment treats you nicely!

Jianchi

Tif, thank you!!!  I will have to say that it's so far really much better than the AC.  Although I had the fainting experience at first, I think it was an unnecessary accident.  I was told to skip the neulasta as well as my white counts were doing good.

TifJ

Glad to hear the Taxol is taking it easier on you! Woo Hoo to good white counts!

kathyrnn

*waves Hi to TifJ*

Jianchi - I had the reverse of yours with Taxol first.  I never had to use the Neulasta during Taxol.......so woo hoo, you may be all done with that.

BanR - my initial her2 came back slightly positive but my FISH was negative.  If I remember correctly the FISH is a much more accurate test that the quick one they do after surgery.

BreezyH

Hi everyone,

New to this forum,looking for some encouragement! Dx in August, finishing chemo in 3 weeks and I'm beginning to panic! Feeling that loss of control-the what do I do next feeling. I know I'll have some test after chemo ends, so that leaves me anxious-I had some lymph node involvement. I'm just so stuck in my head right now-trying in vain to lose weight but hopeful that when chemo ends it will get better. But right now I'm feeling fat, bald, lopsided(lost 1 implant) and just not myself.  But really most of all I'm terrified that chemo didn't get it all. Sorry for this long post of poor me but it can be hard to express this to my loved ones without immediately hearing that everything will be fine, chemo worked, the end of chemo and cancer will be all behind you etc.

I guess I'm asking how everyone handles the next step, the wait and see phase? I'm a stay at home mom so in stay pretty busy and am really trying to focus on my 3 little girls but any ideas will help and be appreciated!

Thank you everyone

JAN69

Breezy - Welcome to the website you never wanted to visit.  I understand.  Things will get better, but in the meantime you will learn to put aside some worry and focus on the moment.  The worry may never go away completely, but a new normal will gradually set in.  I'm 3 years out and stil wonder if......  I see you live in the very North so you probably can't get outside and go for walks, etc.  (I live in sunny, and currently very warm, California and still don't do enough of that.)  With 3 little girls I'm sure you keep very busy, but could you get together with a friend for lunch every week or so?  Sometimes that is the only way I get out of my rut and get "news" from beyond my 4 walls.  Please come here often for support and sometimes even a little fun.  Best wishes from someone who has been there.  Jan

BreezyH

thanks JAN69! Yeah, the weather has been especially difficult. It makes getting out much harder!

Thanks for the kind words

simplelife4real

Breezy:  Welcome!  I was diagnosed about the same time as you.  I did neoadjuvant chemo and just finished a couple weeks ago.  My surgery is in two more weeks.  I have rads to do after that so it will be a few more months before I'm finished with initial treatment.  I think about the same thing you do....how to cope once the focus is off of treatment.  I spent the first few months after diagnosis in a panic.  I probably had the equivalent of PTSD.  I finally realized that I just couldn't live in a constant state of fear and crying.  I don't know if you read self-help books much, but one that has helped me tremendously with all this is called "Loving What Is" by  Byron Katie.  She has something called "The Work"  which can be applied to any problem...big or small.  It actually has worked for me on all kinds of things since I read her book a couple months ago.  Somehow, that book really has helped me get to a place of acceptance with what is going on.  It's not to say that I never get scared or that I don't cry about it anymore, but I'm much more able to move out of that dark place and on to other things.  Don't know if that helps any, but I just thought I would share what is currently helping me a lot.

Ban and Jianchi:  Hang in there.  Having just finished my last chemo two weeks ago, I'm AMAZED at how much better I'm feeling already.  It won't be long for either of you before you are done.  It's a great feeling to have that part of treatment over.

I am feeling SO much better today than even yesterday.  I think my red blood cell counts are coming back up after finishing with AC.  My heart rate isn't skyrocketing today with the slightest exercise.  Hubby and I went to our first ball room dance class since early December yesterday afternoon.  It was wonderful to be out around people.  I had to sit down a rest alot, but everybody there understood.  Today, I have been up and doing things all day around the house.  After five months of chemo, there is a lot of clutter here.  I have been enjoying to be able to make a nice dent in that.  It makes me feel better not to have to look at things lying around.  I'm so happy just to feel somewhat normal!

Titan

Hey Breezy!    the end of treatment is always a freaky kind of thing...just concentrate on getting yourself back....chemo can do alot of crap to your body so you need to recover from that....plus all the emotions you have gone through the past few months...expect to feel better..little by little...I just kept track from week to week...asked myself ..do i feel better than a week ago..and usually the answer was yes...(yeah..talking to yourself is good..lol)....takes time......you will still be seeing the onc..and that is a good thing....believe me..you will not be dropped off the radar by any means....

Jianchi

Kathy and Simplelife4real: thank you both for the encouragement!

KateW

Breezy, totally going through the same exact thing! Diagnosed around the same time and have recently finished chemo. I feel like I haven't figured out my "new normal..."  I agree, the weather is not helping and restless kids being off school makes it even harder. This is a great site for support though! 

Kate

wwww.katebeatingcancer.blogspot.com

BreezyH

thanks Titan! It's just an overwhelming feeling! I think I just want to hop back into my life-what things were like 5 months ago. I think I just need to take it slow like you said. Thanks!

BanR

Jianchi: after my 2nd taxol, i am more or less fine. I am sure we all agree that taxol doesnt lower counts too much, doesnt cause nausea. etc

Simplelife : so good to hear the worst is over for you. i hope your surgery goes well and you achieve a PCR did they put markers round your tumor before chemo? 

Kathy: thanks for your reply. its reassuring to hear from others who had her borderline and Fish negative, and how they got treated. I came across an article a few days ago which says that her borderline tumors should be treated for herceptin inspite of Fish being negative. Got a little worried after that.

Breezy: sending love and good wishes to you. we are all together in this journey! I am sure after my chemos get over I will get the same worry on and off. 

And good to hear from you Titan.. you are close to your 5 year mark! YaY!!! do share something about your diagnosis and treatment etc

love n hugs to all

Curlylocks

Hi Ladies,

Saw my oncologist today, got my treatment plan.
Chemo again...starts Feb 11/14. Pic line being inserted next Wednesday
as my veins are crap from my first round of chemo in 2005/6.

I am having 4 rounds of TC (taxotere and cytoxan) once every 3 weeks with a neulesta injection 24 hours after each chemo.

My
new bc was triple negative, 1 cm and a grade 1. My oncologist said as
they cant do oncotype testing on triple negative tumours and the fact
that triple negative is a pretty aggressive cancer he doesnt want me to
take the chance
and have it come back with a vengence. I am also still youngish, 49.
Also, my lymph nodes cant be tested as I had 23 removed the first go
around with bc.

I will also have a CT scan, bone scan and a chest xray prior to the start of my treatment.

I
am angry that I am going down this path again after 8 years of being
cancer free....I guess I am lucky that I did my prophy mast when I did
in December, oncologist even commented on whether or not it would have
been picked up with regular screening due to dense breast tissue.

Michele

simplelife4real

Curly: Of course you're mad about the new cancer! You were having surgery to try to avoid all this again and here it is anyway.  It would be kind of odd not to be angry/sad/frustrated to have to deal with bc again.  It is amazing that your new bc was picked up the way it was.  You are so right that with dense breasts, it probably would have been a good while before it would have been picked up on a mammogram.  Mine wasn't picked up by my annual mammos for that reason.   It's also amazing (to me at least) that your tnbc is grade 1.  That is good.  Most of us are grade 3.  I wonder if yours is grade 1 because is was caught so early and hadn't had time to morph.     How is your surgery recovery going?  You have a lot going on between recovering from major surgery and getting ready for chemo.  I hope the TC combination isn't too rough in terms of SE's.  

I had an good day yesterday in terms of energy levels as the last of the AC chemo leaves my body.  I guess it is all relative.  Three or four days ago, I could barely do anything.  Yesterday, I was up and dressed and able to  declutter around the house a bit.  After five months of chemo, this place is looking pretty messy.  Hubby was great at caring for me, but keeping things tidy isn't on his radar screen.  I wasn't about to ask him to clean while I was laid up.  I figured he was doing the best he could, he didn't need me nagging from the couch!  I'm not ready to go out running, or probably even walking at much more than a snail's pace, but it feels so good to no longer feel like I'm trying to pull a two-ton truck behind me when I walk from one room to the next.

PeggySull

Breezy, this is a good forum for this time in your BC treatment.  After treatment at first I wondered if there would ever be a morning when I woke up without the BC being the first thing I thought of.  Now, nearly 9 months post-treatment, I can say that it is usually not the first thing on my mind.  However, there isn't a day that goes by that I don't think about some aspect of it.

Today I am trying to find acceptance that I am not the old me in terms of energy.  I've finally got my creativity back (that's really a gift of BC--realizing my mortality has helped me focus on priorities) but when I use that creativity and "go to town" on my projects I end up coming down with a cold that stops me in my tracks.  I don't have the immune system I had pre-BC and I need to learn to slow down.

With three kids you probably don't have some choices to slow down.  Can you get some outside help at least for housecleaning and a babysitter so you can have time just to see a friend for coffee or just to stare into space?

Curly, so glad they found the BC so early!  I too am triple negative.  If i hadn't had the 3-D mammo that was new to my facility for an extra $40 (and I almost skipped this thinking there was no breast cancer in my family and there were other things i could do with $40 but at the last minute i opted for it and it likely saved my life--there were never any lumps that could be felt--more like striations). 

 If  my BC returns at any point I will be outraged, knowing what I know now about how treatment affects me.  I'm glad you've come to this forum (and others you may have joined again).  Yet knowing that I survived last time would probably give me some assurance that I could get through treatment again and that I would get my life back again, different but still me.  i am hoping that this treatment for you is easier than the last, physically. Emotionally I can only say that you sound calm between the storms of emotion even as you are trying to gear up for another round of treatment.  Is this the case?

Hugs to all, 

Peggy

TifJ

Just a quick drive by to wave "Hi" back to Kathy!

Hope you all have a good day today!

BreezyH

PeggySull

Thanks for the words! I've have been very blessed with a extended family that has taken amazing care of me and my kiddos.  I had some complications after the dbl mast so I literally did not hold my baby from the last week of August until October 31. Then another complication less than a month later left me not holding her for another 2 weeks-ugh!  Still I have family that comes during the day for a few hours to help with the girls, keep me company or let me rest. It really has been a blessing. 

I am just ready to get back to the gym and I hate that it's not going to be anything like it was before and chemo weight is just the worst.

I feel so silly complaining about this stuff when I read everyone else's post. There are so many strong women here that are amazing examples of how to handle this all so gracefully! 

Thanks everyone for the inspiration!

Breezy

LPBoston

HI Curlylocks,

You are on the same path as I - cancer in 2005 and back with Triple Negative no lympe node involvement either time - I also had the 4 rounds of taxotere and Cytoxan every 3 weeks with the neolasta shot 24 hours after the chemo injection. As I mentioned before I was allergic to the taxotere but they had to give it to me anyways so I had to be densitized to it.  I was able to work full time through it all with just one day off (working from home) around the 5th day after the chemo.  You will get through it! You seem very strong and have the right attitude.

Thinking of you!

LPBoston

Stupidboob

Thanks Kathy............:)

To all the newbies I wish you the best and I wish I could be here to offer some wonderful words but still dealing with my emotions on my BC returning.   Stay strong and just remember to allow your feelings.............DO NOT BOTTLE THEM.......it is not good for you.

 I finished my radiation in Sept. and I still feel that I am tired.....I know some of you ladies said that it was months afterwards that you felt your strength come back, it is going on 5 months for me and I just feel off.   Is this normal?

I second the whole not wanting to hear.........."oh your surgery and treatment are over" so it is all better.  They do not realize what our bodies have endured. 

Hi to everyone and congrats to the ones celebrating.  

My thoughts and prayers to us all..........:)

simplelife4real

Sadie,hugs.  Just post when you feel like it.  

I have an odd ball  situation with my upcoming surgery (LX and ALND on Feb. 13)  that has caused me to have a lot of questions about what I want to do. I have subpectoral implants from a surgery thirty years ago that I think will cause problems with the radiation I need. I had messaged the radiation oncologist my questions and she called me yesterday. I haven't met her yet, but she seems really nice and helpful. I'm going to go in and see her next week. The old implants are coming out for sure (they are ruptured) , I just can't decide if I want to fool with having new ones put back in. That's currently the plan, but I think I'm just going to get the old ones taken out and not replaced. I don't want to have to deal with potential future surgeries over the next few years. (Radiation can cause painful contracture of the implant capsule.) I also want to make sure the radiologist is able to create the radiation field I need. It will be interesting to see what the radiation oncologist says when I see her next week.

Sometimes, I think I'm nuts for not going the BMX route right off the bat particularly with TNBC, but my MO and BS keep telling me it makes no difference in  my chances of survival.  One reason I decided to go with the LX is that I figured it would be less physical stress on my body.  For that reason, I very much doubt I'll get the old implants replaced.  I want to keep the stress to my body at a minimum and I don't want to stress my body more with more surgery the implant fails.  I think the only way I will go through with putting new implants in is if the RO tells me the implant will help protect my heart and lungs during rads.  My cancer is on my left side and I'm concerned about protecting my heart.

My number one goal as I make treatment decisions is to try to make the choices that will maximize my choices of  staying alive. Boob size and beauty are way down on the totem pole of my list of considerations/priorties.  The only reason I'm even considering replacing them right now is that the PS says that if I ever want to have it done, now is the time to do it.  It will be far harder after rads.

I think making decisions relating to cancer treatment is hard.  Everything feels so "life or death."  I sure wish I had a crystal ball and could see into the future...but then sometimes I realize it might be far better that I can't.

PeggySull

simplelife4,

I would consult with another plastic surgeon.  I had a double mastectomy with immediate reconstruction (implants immediately after mastectomy) and after this there was some talk about my getting radiation.  Although it turned out that I did not need radiation,  my PS was alarmed that I had the implants already in before radiation.

I know that for us, vanity is at the bottom of our priority list, but there may be some medical reason not to do new implants before radiation.  At the time I was so freaked out that I might need radiation in addition to chemo and DM to really question anything except for during my meeting with a good radiologist who went over all my records from dx to final treatment and said there was no indication for rads with 99 percent certainty.  I was freaking out because no one ever mentioned radiation before the chemo and DM until after the DM.

My treatment team was fragmented so I had to double check with each member of my team so often during treatment about what the other had said, and what it meant and I was really tired from the chemo and surgery--I didn't go back to the PS and ask what she was alarmed about.

I hope your team is more coordinated.

Hugs,

Peggy

Bunnygirl210

I'm glad I found you all!

After my slightly + progesterone marker turned negative after surgery, I was desperate to find some sort of hope with this scary TN diagnosis. That's how I found this forum!

I was dx in July, 2013. Had 4 rounds AC and 4 rounds Taxol, finishing in Dec.  

Next up was surgery after a 4 week break to let my body recover from chemo. Waiting the 4+ weeks made me very nervous, but I was assured that nothing would pop up again in that short time and that my body/levels needed to recover before surgery.

Well, during that time a hard bump popped up in my neck as well as a small hard bump at the location of the large tumor still in my breast. Three Dr.s told me the lump in my neck was nothing to worry about. THREE. Since I was already scheduled for a single mastectomy, I had the BS remove the lump in my neck so I would not keep worrying about it. It was + for cancer! Why was I the only person suspicious of this?!

It's so important to know your body, go with your gut, and be your own advocate!

Surgery was two weeks ago. I am now looking at more chemo...carbo platinum and gemsar (sp?) and still need radiation as well. Will be sad to watch my new hair growth and eyebrows fall out again. I was so happy to be getting it all back.

There is so much to read here...i need to limit myself so I don't end up spending my day reading about cancer!

But I have seen a few of you mention Metformin. What is it and how does it help TN?

Thanks for all of the shared stories.

kathyrnn

Welcome Breezy - this is the place where you can discuss your feelings honestly. (I know my friends are trying to help when they tell me "everything will be fine" but it just isn't helpful). All of us here understand your "what now" fears and being in the "wait and see" phase.  Titan is right, after treatment you will see week by week improvements in your health.  The one thing cancer has done for me has put my weight at the bottom of my concern list.  Each time I was diagnosed with cancer....I had significant, unexplained weight loss.  When my PCP recently brought my weight up, I just laughed at him!!! For the first time in my life, I'm glad to get on a scale and see I haven't lost any weight!!!!

Simple - thank you, I just ordered that book from the library. Glad to hear you went to dance class.  I'm a month out of chemo and I can see myself coming back to life (there were times during chemo that I was sleeping 16 hours a day).  I'm also starting to be able to have the energy to shovel back some of the mess that has accumulated!! (big priority because I'm still hoping to bring Mom home).  I can't give you any advice about your surgery....but there is some info I want everyone to have.  After I had already had my surgery and went to the RO, she mentioned that sometimes radiation shrinks your breast.  (What????? No one thought this was something you should mention when I was making my surgical decisions????). After my LX, my breasts where approximately the same size.  After radiation I ended up with a DD on the left and a large C on the right. (It is a very visible difference). I'm not a person that's concerned about body image (I'm old, lol).......BUT a result like this may be significant to someone else! I think it's something your doctors should inform you of long before you enter radiation treatment.

Curly - as Simple said....of course you should be mad.  She's also right that it's great news that your tumor is a Grade 1 ( less aggressive).  Fight on girl!

PeggySull- wonderful to hear your creativity is back.  I hear what your saying about getting accurate information from a "fragmented" team.  My BS almost fell off her chair the other day when she found out I knew my prognosis.  Her exact words were "who told you that!!!!"  The information came from my MO at that the same facility that is part of "my team" there.  ( so I'm not seeing a lot off communication even between doctors that supposedly in close contact)

Welcome Bunnygirl - I know you don't want to spend all your time researching cancer, but new current information is one of the great features of this thread.  Everyone brings the information they learn from their doctors and other sources here.  I've learned info here that my doctor's weren't even aware of yet.  About the Metformin.......there are current clinical trials going on to determine if this drug helps with controlling cancer.  (Remember that it's still unproven).  I was offered a spot in this clinical trial, with a 50/50 chance of receiving the drug.  I brought the research to my PCP and convinced him to prescribe it.  (Others on here have done the same).  I have relapsed while on Metformin.....(not sure it's a relapse.....doctor's admit it may have "been missed" during the initial treatment.) but I'm still hoping that it is slowing things down.  I can't tell you strongly enough to be your own advocate!!!! ( I had to go to my PCP, and get a CAT from him to prove to my "team" that my cancer was back).  This site is an important part of helping you be your own best advocate!

*waves hello to everyone I missed*