Go To Main TNBC Website


  New Posts New Posts RSS Feed - Just found out I have TNBC. Need a friend.
  FAQ FAQ  Forum Search   Events   Register Register  Login Login

Just found out I have TNBC. Need a friend.

 Post Reply Post Reply Page  <1234>
Author
aligrace726 View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2013
Status: Offline
Points: 48
Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 6:12am
Mainsailset,
       Great song,  I"m going to try and do what you said, be the best patient ever. I'm just really scared right now. I'm just starting this and a lot of what ifs goes through my head. I haven't had any of the other testing done yet that needs to be done prior to chemo. What if something else comes up? I'm just so scared. I"ve never mind testing at all, just waiting for results is the worse.
I have 2 beautiful grand daughters and I so much want to be there for them as they grow up. It breaks my heart to think I may not be here for them..... Getting really emotional again, must be time for another ativan.
From the reading on the bottom am I to assume that you have completed everything and are TN free?
                                                                           Thanks for your encouragement and advice.
Back to Top
aligrace726 View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2013
Status: Offline
Points: 48
Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 6:54am
Does anyone mind me asking how old they are and what kind of support they get from their family to help get through this? Has any of your doctors recommended seeing a psychiatrist? 
Sometimes I feel as if nobody around me really cares about what I'm dealing with or understand how
dramatic and life changing this is for me. I feel so alone when it comes to this. I feel like its hard for me to be part of anything.  Anyone else feel that way.
DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
Back to Top
JulieKCA2013 View Drop Down
Senior Member
Senior Member
Avatar

Joined: Mar 12 2013
Location: United States
Status: Offline
Points: 217
Post Options Post Options   Thanks (1) Thanks(1)   Quote JulieKCA2013 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 7:20am
I am 33 yrs old.  I have a brave mother who has 5 daughters.  Two recently struggling with drug additiction and now me the problem with cancer (just joking).  She is very supportive when I need her for the kids.  My husband is my rock as far as listening and picking up where I can't do stuff right now.  I have two kids 3 and 5 yrs old.  I started at a different spot in my journey.  My family was not happy that they wanted to do chemo first and not just remove the cancer now.  I do understand and am happy doing chemo first.   I had one lymph node that measured 1.7cm and they thought it was suspicious for cancer presence.  So they did a fine needle biopsy, outpatient and confirmed.  They told me that means when I have my surgery more axillary lymph nodes will be removed as a precaution.  My doctors did recommend talking with social work.  Since I do have small children at home.  And did offer relaxing medications if needed.  I haven't taken them up yet, with the two youngins I don't think I will.    Sounds like you have a good relationship with your hem/onc.  That should help.  Let her know of your emotional distress.  The first days after I was told  I was TNBC I felt exactly like you.  But it did go away.  Remember you aren't alone.

<3  
Dx 3-7-13 TNBC, 5cm pT2N1M0
3-19-13 ACx4, 5-14-13 Taxolx4
7-17-13 BMX ypT1N2M0(.9mm) 4/24 nodes.
10-8-13 completed Rads x 30
12-3-13 completed Eribulin Trial
10-18-13, 3-19-14 Bone/Ct Scan Clear
Back to Top
aligrace726 View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2013
Status: Offline
Points: 48
Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 7:47am
I'm 47 and I have a 30 year old daughter who works full time. I have 2 grand daughters 4 and 7, that are the loves of my life. I worked for years but after my grand daughters were born I chose to be a stay at home grandmother, so my daughter could work. She has a high paying job and has also went back to college to get a speech therapy degree.
My husband works full time, and I have my mother who has pretty much been my rock.
My husband doesn't understand what I'm going through at all (thought he would considering we've been married 31 years) He see no point in the crying and depression and says I'm over reacting because I don't know everything yet. 
My daughter seems to think like he does. I feel they have no heart or understanding at all of what I'm going through.
My mom is great. She is in her late 60's  and I really hate the fact that she is going through this with me. I always thought when she got old I would be the one to take care of her. She has even cancelled her cataract surgeries so she can go to my appts. and be there for me. I have no sisters, and only one brother. No one other than my husband, daughter, and mom know about what's going on with me.  Haven't told my brother or any other family or friends. Some say its wrong, it's just the way I am.  
Wow 3 and 5, I can't imagine how hard that has to be for you. Going through treatment and not being able to be there 100% for them. But its great you have a husband that is there for you, to help and listen.
As for me I had surgery first and treatment has yet to be determined.
I have asked or read anything about it, but can this be past down to our children or grandchildren?
Thanks Julie love talking to you.
DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
Back to Top
Natalie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 11 2011
Location: Bay Shore NY
Status: Offline
Points: 470
Post Options Post Options   Thanks (1) Thanks(1)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 9:51am
Ai,
I am feeling so much for you right now. I can picture you with wringing hands and shaking nervously & feeling like you want to run into the mountains and scream & sob at everything just to be heard & understood by the ones around you.
My husband & I had a very strained relationship before my DX, and I thought human compassion would be present for me regardless. Well that is what I would have felt had something happened to him. He was not very supportive at all. I didn't want anyone to really know what was going on with me unless I shared the information. I just felt it was mine to share. 
I have 2 boys an almost 21 year old and an almost 18 year old that was severly injured almost 5 years ago. Although I told my boys with my husband, I did not want there friends to find out from the community. I wanted them to hear it from me with there moms & or dad with them. I told the parents that I was close to 1 by 1. I set a day that these kids (feel like they are mine also) and there parent to come to my house. I shared with them the news and they had the support or parent with them to take this in. Lots of hugs & crying went on.

I have 2 sisters, my brother passed in 2005. I supported him through his diagnosis. My 1 sister lives in Fl. love her dearly but she is like Atilla the Hun to try to take control and tell us what to do. My other sister lives close and she is more like me, she has her grandchildren living with her and there parents. I could not have my sis around too much because she lived with these little beings that are also little petrie dishes for germs that I did not need going through treatment.

 I have my few really close girlfriends, they are the ones that supported me emotionally through, taking me to treatments, surgeries and to just emotionally release. I also found this support group, that I can't even begin to tell you how they helped me. I was slow in writing, not really wanting to let anyone in. I stalked for a while.

I had a friend that supported me also with Reki, he had come to my home to treat my son Carl (injured), and when I was diagnosed and started chemo he was here every week to do a treatment. He really helped, don't know how but that energy took the edge off of me so much for a little while. Yoga also helped to clear my head, I am not a Yoga nut but level 1. I did mostly restorative Yoga, because it was difficult with how my body felt. That really helped also. So if you are open to it, I would strongly suggest you try it. The atmosphere is full of support and love in both Reiki & Yoga.
Accept help from others, as tough as it is. We can not be wonder woman through things of this nature. Accept the meals offered and the rides to appts also. 
No we don't want everyone to know right out of the gate. How can we feel good about sharing this info when we at that time are trying to understand it ourselves. You will share in your time and place. When you do you will feel the support.

I feel I this entry getting too long right now, but felt the strong pull to write to you.

One minute, hour and day a time. Breathe, and feel your feelings as you are. You have to right to feel anything & everything you are feeling. Unless someone walks your walk they have no idea. 
Hopefully hubby will get there, maybe he is feeling it too but just wants to downplay it for you and that is how he feels he is helping you. 

My best,
Natalie
 

TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
Back to Top
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4456
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 10:22am
Dear aligrace,

sorry late on this thread..I, too, join with all here and wish you good luck on this journey. Very often, TNBC is sensitive to chemo and I am hoping that will be the case with you.

Yes, if you have a genetic mutation you can pass that mutation to your child and then that child if positive can pass the mutation to their children. If you have not done so already you should meet with a Certified Genetic Counselor (CGC) who can explain everything to you. I carry such a mutation, BRCA1, and passed it to my daughter who was diagnosed with TNBC 8 years ago when she was 36. Thankfully, she is 44 now with no evidence of disease.

The National Comprehensive Cancer Network (NCCN) recommends that any woman under the age of 60 be tested for the BRCA mutation, irrespective of family history.  In my opinion, you should test for the BRCA mutation. It is a blood test and should be covered by insurance. I would recommend the complete panel (BRACA and BART) but don't take my word for it..Please be guided by a CGC.

If you test BRCA+ you got the mutation from one of your parents and they should be tested and one of them will be positive. Your daughter will have a 50-50 chance to inherit the mutation from you, IF you are positive. Hopefully, you will test negative. 

If you have any questions I am sending you a PM with my contact info. I do my advocacy work as a volunteer so there are no charges. But, I am not a medical professional and will not give you medical advice.

Good luck to you!!! and please try to find the beauty in each day.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
Back to Top
aligrace726 View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2013
Status: Offline
Points: 48
Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 2:34pm
Natalie,
 How are you doing healthwise now? Sorry to hear you can't get the support from the people you love the most. It's especially hard for me considering I've been married 31 years and my husband is not supportive at all.  He did however help with the housework after my mastectomy, but not very supportive in the emotional part at all.
When I saw the surgeon yesterday he told me that I was triple negative, and that he got the cancer by doing the mastectomy. He said that it was the aggressive kind. I was tinkled pink to hear that I was triple negative. I thought that was a good thing. Since the cancer was gone. How wrong I was.
He did set me up to see  a Oncologist next week to see what she want to do about treatment, etc.
I came home got on the internet and found out that I had nothing to be happy about at all. This means my journey will never be over and its something I will  have to live with and worry about the rest of my life.
Still don't understand what he meant Triple Negative, Stage 1. I can't find anything on staging for this. If its gone why would I be stage 1 or was that the stage before the surgery. I wish doctors would explain thinks more, they shouldn't assume we know everything.
I'm assuming I will have to have chemo, my husband says if it was him he wouldn't do it. And I said this is my life I would rather be safe than sorry. And his reply was... well if the doctor got it all why would he send you to a Oncologist and do treatment for something he already got. He thinks it's a money racket. So  you see what I'm dealing with. 
Only my husband, mom and daughter know about this. And myself I really want to keep it that way as long as possible. I don't want people fussing over me and giving me those hopeless looks. And I really don't want people that never cared to socialize or come around before to feel obligated to help me. I want the people around me that always have been. The ones I know that really care.
I don't know if that makes sense or not.
I'm so grateful for this site and the people on here. It's helped more than you can imagine. It's nice to talk to someone that has been in your shoes and know what you are thinking and feeling.
Thank you so much for replying, it really helps more than you know.
DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
Back to Top
SagePatientAdvocates View Drop Down
Senior Member
Senior Member
Avatar

Joined: Apr 15 2009
Status: Offline
Points: 4456
Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 3:21pm
I think this is a good explanation of the various Stages..


You need to make sure that you are speaking to medical professionals who are knowledgeable about TNBC.
It is a different beast and you need to find the right experts. As far as folks "fussing" over you it is also good for you to have a supportive care team to help you through chemotherapy regarding such things as nausea control, GI issues, and general psychosocial support. 

Please reach out to knowledgeable people and be honest with them and let them try to help you. 

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
Back to Top
Natalie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 11 2011
Location: Bay Shore NY
Status: Offline
Points: 470
Post Options Post Options   Thanks (1) Thanks(1)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 4:35pm
Ali,
I think you are married to my husbands twin, everything to him is a scam about money or some other alternative reason. Granted somethings are, and with knowledge and research we come to our own conclusions and do what feels right for us.
Hmm. I understand completely how you feel about not letting the people in that weren't there before. I had that situation on occasion myself when someone wanted to send a meal. I accepted, and appreciated it. At those times it was welcome when I felt like crappola and didn't want to have to stress over dinner. Hubby dearest (like mommy dearest, if ya know of the movie) was sure not busting a sweat to do these things.
As for the countless people that called to console, offer rides and all sorts of stuff that I nor them gave each other the time of day before....Well I didn't accept. I needed to feel comfortable with whoever I let in to my core. Those were my few close friends. I do think people do and offer things out of the goodness of there hearts in situations like this most of the time. My husband felt me to be selfish & a biatch at those times, but I stuck to my guns on things that I felt comfortable and good about. I needed to have as much control in my own 3 ring circus. I let my guard down when I needed.
As for my health? I am fairing pretty well, I do have some side affects from chemo that I have to deal with. The top residual lingering affects are joint & muscle pain along with fatigue when trying to do a lot & chemo brain. Everyone is different, but there are some common SE with a lot of us.

What ever your options and ultimate decisions, are ultimately yours to make. Many people do this all sorts of ways as you have seen. Whether it is alternative eastern medicine, western medicine or a combo, surgeries, chemo with or w/o radiation. It is your choice and you have to feel grounded and strong in your choice.

I hope hubby comes around to it, if not then you will do what you need to do to make it happen and work out. It is sad that with some people it is when the sh*t hits the fan you start to see what it is that they are made of. Didn't take long for me to get my tunnel vision on my goal, and moved full steam ahead no matter what he did.

Think about the Yoga and or Reiki thing. If you have not done it before, it might seem strange and odd but it is a very welcoming arena to be in. One step at a time for now.

Hang in there we are here for you any time,
Natalie
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
Back to Top
Natalie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 11 2011
Location: Bay Shore NY
Status: Offline
Points: 470
Post Options Post Options   Thanks (1) Thanks(1)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 4:41pm
Forgot to say we have been together 28 years, and there have been signs over that time that we would react differently to lifes hard slaps.
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
Back to Top
aligrace726 View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2013
Status: Offline
Points: 48
Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 7:11pm
  Natalie
Yeah it does sound like they may be twins. I guess some people reading these post wonder why we have stayed with them this long.
I will google the Yoga and try it out. I'll try anything that will help with my anxiety and depression, and on top of that keep my mind off things.
I'm assuming I will need Chemo, so after my appt Tuesday I may need more advice. I'm really scared about this appt. especially not knowing what to expect. 
Did any of your doctors offer to find you any psychological help, if so did you do it and did it help? 
I know the reconstructive doctor I saw mentioned that I should see a psychiatrist because it was dramatic and something I would have to live with the rest of my life. 
I chose not to have the reconstructive surgery for now.  But would be interested in the psychological help.
By the way, It came to me earlier, if I do need Chemo  how do I go about purchasing a wig and what do I look for in one that won't slip and look natural? And if I purchase it online, how will I know if it will fit?
And if anyone else reading this has any suggestions, please feel free to jump in.
DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
Back to Top
rosered71169 View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 19 2012
Location: Northern Ohio
Status: Offline
Points: 88
Post Options Post Options   Thanks (1) Thanks(1)   Quote rosered71169 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 7:32pm
Ali-
I am 43 (42 at diagnosis)and have three daughters who are 16, 14 and 14. It was extremely hard to think that I might not see them graduate let alone get married or have their own children. I have gone through neoadjuvant chemo (before surgery), a bilateral mastectomy and radiation. Halfway through chemo the doctor did an MRI which showed that the tumor was gone as well as any cancer in my affected lymph nodes. I still went through the rest of the treatment just to be sure it was all gone!
 
I have struggled emotionally all through the process. It can be hard because people ae judgemental - they either want you to be the strong cancer patient who is fighting hard or they want to lavish you with pity because they think you are dying. Sometimes it is nice to "hide" behind the wig and go about your life - like when you are at the grocery store and don't want to hear about the cashier's grandmother who died of cancer.
 
I would definately recommend exercise to work through anxiety, depression and stress. I do yoga and find that it does good for the body and mind! Walking my dogs or riding a bike can help release tension and make you feel stronger.
 
I hope that after you speak to your doctor you will feel more at peace and ready to fight this demon!
IDC 2-21-2012 @ age 42 TNBC, Stage IIA, Gr 3, 1.5cm Tumor Rt Breast, 3 Lymph Nodes, Neoadj Chemo, TACx6,BRCA Neg, Bilateral Mastectomy 7-30-12, 28 Rads, Bilateral DIEP 5-22-13...3 Beautiful Daughters
Back to Top
Natalie View Drop Down
Senior Member
Senior Member
Avatar

Joined: Nov 11 2011
Location: Bay Shore NY
Status: Offline
Points: 470
Post Options Post Options   Thanks (1) Thanks(1)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 7:43pm
Ali,
That is the master of questions LOL why why why???
Enough of that now, shake it off.
Ask around your community about the Yoga, I don't know where you are but I will bet it is out there for you.
At your appt. go prepared with any questions you can think of. No question is silly, so ask it any way. before starting chemo, I think most of us here needed a MUGA scan to check our hearts function. Chemo can be waring on the heart. The scan was a breeze for me, just laid there with an intravenous for a short time. Most of us have had a port put in place, and some were able to take chemo through there veins. Depends on the chemo. If you do have chemo & need a port, they will put it on the opposite side from the cancer.
Just take one step at a time, if it is decided you are going to have chemo then there will be plenty of info. to digest that you will be offered here on this site to prepare.
As far as wigs go, I chose no wig. Unless it grew from my body, it just would never feel natural. I saw a number of women with there wigs shifting on there heads making me feel like saying to them " come here let me just fix this for you". One woman I actually did it to, she was appreciative of the fix. I went with the never forever lasting bandannas. Besides it gave me a chance to feel a bit like a hippie Wink Besides during chemo about half way through I started having the chemo induced menopause that a lot of us had. Feeling the sweat emit from my scalp under a wig would have driven me bananas.
It was just more in my comfort zone then any other option. I am sure someone else can chime in on the knowledge of wigs for you.
No I did not seek professional help psychologically, I had made a couple of friends at chemo, had my besties here near home and the yoga & Reiki to help keep me sane. I am sure if you contact a local Breast Coalition in your area they can help also in this area for referral. They can also help with other things as well like gas cards to appts., rides if you need it to appts, grocery store gift cards, meals etc. There are many resources out there that you can pull on, locally, state and nationally. Once again One step at a time.

Start writing down your questions and concerns for that appointment on Tuesday. Get your self a note book with the dividers in it or some other organized writing thingy.

Be well, and please try to relax,
We are here for ya.
Nat 
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
Back to Top
denise07 View Drop Down
Senior Member
Senior Member


Joined: Jun 26 2010
Location: pa
Status: Offline
Points: 997
Post Options Post Options   Thanks (1) Thanks(1)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 8:57pm
Ali,
Regarding your husband he sounds alot like mine it is strange he said almost the same words as your husband said if it were him no way would he have the chemo and it is all a big money racket thing, well I looked at him and said really the choice is not up to you this choice is my decision not yours I am the one with cancer not you and I hope you never have to make this choice but he never got it he things once you have surgery your done it is gone little does he know any way he is not a doctor person at all but who is?I told him well my oncologist only went to school for ten years I think he knows is stuff, just listen to your oncologist he will be the captain of the team of your new doctors if you are not comfortable with your oncologist you can always go for a second opinion I am very comfortable with mine and feel very blessed to have found him, as for a psychiatrists my onc suggested that I see one once my treatments ended and I did for two yaers after my diagnosis he helped alot with my depression at the time don't get me wrong I probably will never be the old me again but I have come along way from what I was back then so seeing one may be a benifit for you also every one deals with cancer differently some just move on with there lives and others are just not the same there are no two people that handle things the same way every one handles things differently in some ways I am much stronger I will not take any bull from any one any more I am more outspoken now then I ever was as for my husband he says chemo is poison to your body and I told him sure it is it is also poison for my cancer, I guess what I am trying to say just listen to your doctors ask alot of questions and when you feel sad and lonely we are here for you, just take one day at a time that is all we can do. I wish the best for you and I hope your treatments fly by and you will move on from this maddness it is strange in a way I felt more safe when I was go through my treatments when they ended I felt hopeless again because we have no targeted therapy afterwards. Please let us know how you make out with your onc appointment I am sure everything will work out and you will be just FINE I know you will.
Hugs to you...
Denise
DX Idc 10/07,st2,gr3,2/6 lymphnodes
Back to Top
aligrace726 View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2013
Status: Offline
Points: 48
Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 3:30pm
Rosered
  You sound so much like me with the judgemental part. Everyone keeps telling me to be strong, not realizing it's not about being strong I guess you have no choice but to be strong. It's about being scared, not knowing what your future holds and constantly having thoughts going through your mind of not living and missing out on the great moments of your families lives. People just don't understand at all.
And the pity thing is why I've only told my husband, mom and daughter. I don't want pity.
I have been thinking of questions to ask. But if you can think of any that you think I need to ask, feel free to let me know.  
Thanks so much
I hope I feel better after talking to my oncologist too.
DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
Back to Top
aligrace726 View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2013
Status: Offline
Points: 48
Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 3:38pm
How are things going for you today, Julie.
I think of you often, considering we are pretty much in the same place in our journey.
I'm depressed today and feel like I'm all alone.
I've had to take ativan the last two nights to even get any sleep. 
This is so hard.
I can't imagine how hard it is for you to keep a straight face and stay strong with two small 
children.
I have two grand daughters 5 and 7, that were here friday after I got home from my diagnosis 
appt. I pretty much stayed in the bathroom with the door locked crying, while my husband 
entertained them.
Anyways just wanted to see how you're doing.
DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
Back to Top
aligrace726 View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2013
Status: Offline
Points: 48
Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 3:49pm
I can understand your point about the wig, I would imagine they are uncomfortable. But I would probably only wear one when I went out or when my grand daughters where here.

It's been a horrible two days. I haven't cried this much since I lost my dad 2 years ago.
I just walk around the house like a zombie, and can't seem to keep my mind on one thing 
at all.

I did have my local breast cancer support group call a few weeks ago and said they were sending me some paperwork in the mail, but I  have yet to see it.
The American Cancer Society called me 2 weeks ago and asked for information and asked if I needed a support person to talk to when I needed it.  I told the lady yes, and she said she would have one of them call me Monday or Wednesday of last week and I still haven't heard form them. They also said they were sending me some info in the mail. Haven't got that either.

I will ask my oncologist about talking to someone when I see her.

And if you can think of any questions that I should ask her, please feel free to let me know, so I can write them down to take with me.

Since you are doing chemo before surgery. Could you tell me if there is a way that they determine your chemo treatment and are there different types of chemo medicines that they use for different people, our is it all the same.
If anyone else reading this has any input on this, please feel free to let me know also.


DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
Back to Top
aligrace726 View Drop Down
Groupie
Groupie
Avatar

Joined: Mar 22 2013
Status: Offline
Points: 48
Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 3:57pm
I don't feel so alone now knowing other husbands are reacting the same way.
Even though its not right, they should be our knights in shining armor, especially now.
I noticed your Dx at the bottom of the note, are you not TNBC?
I will definitely post how my appt goes and what she says Tuesday. I need all the help and advice I 
can get.
If you can think of any questions or comments for me to write down and take with me, please feel free to let me know.
Thanks so much Denise.
DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
Back to Top
Katdoll View Drop Down
Senior Member
Senior Member
Avatar

Joined: Mar 13 2012
Location: WA
Status: Offline
Points: 214
Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 5:07pm
aligrace, to answer your question it's been three years since I finished chemo and I am living a "normal" life again, though it's a "new normal."  My life will never be the same - I've had some physical and emotional losses, but in some ways I am happier, wiser, more content, a better and more compassionate person.  It is what it is.  Life is sweet and we are all lucky for every day we are given.
For a while I was very anxious about recurrence, but it is not top of mind anymore.  It's not because I feel "cured" but because I've learned, as Steve said, to focus on the beauty of every day and the many blessings I have in my life.  I am just about your age but at a much different stage in my life than you.  My daughter is 14.  She was 10 when I was diagnosed - old enough to be terrified I would die, and that was hard to see.  I have a BRCA mutation so we both also worry so much that she might have the mutation.  It is awful and painful to think about how her life will change if she does. 
 
You asked about seeing a therapist.  I highly recommend it.  I saw a psychiatrist every other week or so starting when I found out I had a BRCA mutation and throughout cancer treatment, and off and on since.  It helped me a great deal.  As you have found, some people don't understand you, and some do but don't know the right thing to say, and others just can't take the intensity of hearing what you're going through emotionally.  Seeing a psychiatrist gave me someone to talk to about anything I wanted, but it also helped me redirect my thinking in a way that allowed personal growth, positivity, and strength.  For a while I took a low dose anti-depressant.  I don't really know if it helped, but he thought I should do it and I don't have hang-ups about that kind of thing so I just did it.  I discontinued the anti-depressant about 6 months after treatment.  I also took an anti-anxiety med "as needed" during treatment and afterward when I experience some PTSD symptoms.  I did not need it often, but when I did it DEFINITELY helped.  Anyway, I highly recommend seeing a psychiatrist or psychologist.  Your cancer hospital may be able to recommend one who works with people who are dealing with cancer-related issues.
 
FYI, your little grand-daughters will probably be more easygoing about you being bald than the adults in your life.  Kids take things in stride.  In fact, I only ever showed my bald head to kids because they were so matter of fact about it.  They didn't think I was ugly or weird looking.  They were just curious why I had no hair and fascinated by how a woman looks with no hair.  Sometimes I even miss walking around with a scarf and people knowing I had no hair.  Before my hair fell out someone said to me that "nobody F&*ks with a bald woman," and I saw how that is true.  Strangers made way for me, did not push me around.  I decided to let myself feel some power about that - which is a nice thing because sometimes having cancer makes you feel like you've lost control.
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
Back to Top
denise07 View Drop Down
Senior Member
Senior Member


Joined: Jun 26 2010
Location: pa
Status: Offline
Points: 997
Post Options Post Options   Thanks (0) Thanks(0)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 5:21pm
Ali,
Yes I was triple negative and hope to never run in to that beast again. Hope everything goes well with your appointment,maybe some questions you can ask are...What grade is my cancer is it 1,2or3 most tns are grade 3.Find out about the chemo what type how many treatments will you need do you recommend to have your treatments two weeks apart or 3? will you need to have radition?if recomended chemo why did you choose this course of treatment for me?Another question to ask is should you have genetic testing done? and I would definately get a copy of your pathology report. another question to ask what is your gameplan for yourself after completing treatments testing etc. I didn.t really have to ask much my first visit i was told I probably would not know what to ask any way because at the time I was in shock but I did learn fast and when you have tests I would get a copy of every one, good luck to you I hopr you feel comfortable with your new doctor and you recieve every bit of information that you need from this visit.
Hugs
Denise 
DX Idc 10/07,st2,gr3,2/6 lymphnodes
Back to Top
 Post Reply Post Reply Page  <1234>
  Share Topic   

Forum Jump Forum Permissions View Drop Down

Forum Software by Web Wiz Forums® version 11.05
Copyright ©2001-2016 Web Wiz Ltd.