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IamRoseC View Drop Down
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    Posted: Oct 12 2007 at 8:57pm
Hi!
 
My name is Rose.  I'm 49.  I was diagnosed with triple-negative breast cancer in October '05.  It came as quite a shock, as I'm sure you all already know!  There is no history of cancer of any kind in either side of my family.  I am not sure if I am a stage two or three, I do know that the tumor was a grade 3, and that they removed 17 lymph nodes, two of which were positive.  One of the cancerous lymph nodes was 4.2cm, while the tumor itself was 1.3cm.  (It seems kinda odd that a lymph node can have more cancer in it than the tumor did, but then again, I'm not an oncologist!)  I had 4 courses of AC every two weeks, followed by 35 radiation sessions, followed by 4 courses of taxol.  That all finished up in September '06.   So, my math says I'm 13 months out of treatment...lol.  All followup testing has come back clean, so far. 
 
I share the frustration than I'm sure many of you feel when I discovered that the prognosis was poorer for us triple-negative types than for the hormone-sensitive varieties. 
 
I feel that all the chemo and radiation and surgeries really kicked me in the you-know-what.  The difficulties I have experienced since treatment finished has been this deep, extreme fatigue and chemobrain.  The last month has seen the beginnings of noticeable improvement in both.  So, I'm hopeful that those two are beginning to fade. 
 
I have been frustrated by the changes I've experienced in my relationships with my friends and family, as well as coworkers.  I feel as if I've gone thru this whole thing with minimal support, at best.  I am seriously considering seeing a therapist because I feel like I've been thru so much, and have been thru it essentially alone.  I'm a single mom, and have had to still be there for my kids while dealing with this.  So that feeling of being alone in this has been a major issue for me. 
 
The other thing I struggle with is that I can't seem to shake the "gloomy rain cloud hanging over me" feeling.  I'm aware that the chances of recurrence are higher for us triple negative types.  I'm doing really well at making sure my kids are still well taken care of, and that they know I'm there for them.  In the privacy of my own mind, though, I am hoping I'll be around to see my youngest finish growing up (she's 13...the other three are 21, 24 and 27), but there is still this fear and lingering doubt about whether or not that'll happen.  Do any of you have this emotional funk thing going on too?
 
Thanks for listening!
Rose
 
 
 
 
 
 
 
 
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shellieh51 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote shellieh51 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2007 at 6:00am
My heart goes out to you.  I was fine with my family but my coworkers were the issue. Many of the company employees were good but the people in my small department left a great deal to be desired.  I have seen a therapist and started seeing another again last week.  The first one was an intern and now I have a resident since I go to a teaching hospital for treatment.  The new student has referred me to another facility for cognitive testing but I will continue to work with him.
 
My sister has been a great source of support and recently moved to CO to be closer to me.  My husband has always been great.  His mother died of BC when she was 51 - she had mets to bone and brain.  My brother whom I love dearly was not around - he can't handle 'issues'.  He finally saw me after I finished treatment and told me that I looked OK if I put on make-up.  I don't think it even registered with him that putting on make-up was a major effort.  You learn a lot about people when you go through this -
 
Take care.
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KIM39 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2007 at 4:06pm
Im right there with ya girl!!!

My brothers are "having a hard time dealing with this" so they are "Staying away so they dont have to deal with it"

My mom is so wrapped up in herself she cant see me.

My friends are just going on with life, no calls no help.

And Im supposed to "understand". Well I dont! Im very disappointed in them Ive been good to alot of people or along time and a little help or even an occasional phone call to check in would be nice.

This is a subject I need to do alot of work on.

Your not alone.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote triplethreat1 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 14 2007 at 5:01pm
Hello Ladies, I am so sorry that you guys don't have any support. If you have the Gilda's House in your state or area -----PLease check it out. It has helped me and my family tremendously.
Yes, I have that great cloud behind me. I have been through alot in my life---- stressful things and this may be the cause of me being triple negative. I also feel this is my third strike. I have had my miracles in my life. To beat this will be amazing.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote shellieh51 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2007 at 2:42am
You're in my prayers.  I think part of the progession of treatment is the anger.  I kept most emails through treatment as a type of journal.  Looking back, its amazing to see how many people started to withdraw as time went on.  I'm trying to move forward.
 
Taike care.
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shellieh51 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote shellieh51 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 15 2007 at 2:45am
My mom is 86 so not much help but she hasn't been through most things when she could have helped like hysterectomy 15 years ago.  In some ways it makes you stronger - just like cancer and treatment - everyone is different.  You'll find strength in the strangest places with the most unlikely people.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 19 2007 at 12:21pm
Hi Rose and welcome!  Congratulations on being thru with your treatments and I'm glad all check-ups have been good ones.Smile
 
Oh yes definitely I think we all have the "funk" for sure!  Going thru
cancer not only runs your body thru the mill but there is usually
alot of confusion and mental issues to deal with and boy it is a plate full.
After treatments, although it would be nice, things do not automatically turn into what we once knew as normal.
 
As time goes along I believe you will relax and the fears of recurrence will be farther back in your mind.  I know people hate to hear this but it all takes time and we are so impatient to get on with our lives. 
 
Cancer does change our lives, affects our friends, family and co-workers and it is surprising the ones who hang around to help and those who disappear into the haze.
 
Also I think the funk can come and go.  If you have the blues too long you might try getting something mild to relax you from the doc.  So many women do that and it really helps.
Keep us posted and best wishes
 
 
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Ronda Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2007 at 2:17pm
Hi Gals,
     I think  a lot of people wanted to help me but didn't know how.  Mom kept asking and my answer was always "help with house work" got some help, but not much.  My daughter (23) helped a bit, mostly keeping me company and moral support, but didn't meet my expectations either (I ended up cleaning after her...alot!).  My son (21) shows up  when I was going through chemo in financial crisis and tells me how much he looked forward to his mom taking care of him again!  Friends showed up with really fattening, processed food,  all felt bad for my plight, but none made it easier (nor could they). 
     I've come to the conclusion that I'm a little hard to please and that no one is prepared for the process of treatment this disease takes (even me).  It's not a sudden event like a car accident that one recovers from quickly.  This is a long, pain staking process that people get bored with hearing about.  I think that is why we need each other to talk to, because no one understands but us. Friends feel helpless, don't want to bother me or don't want to face their own mortality by having to see or hear about what I'm going through. 
      At some point I'll plug back into my life but right now it's hard to do until the whole process is complete.  For now, I'm  recovering from breast cancer, facing more surgeries, and connecting with my triple neg sisters online. "Same ol',same ol'".
 
Ronda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Rena21 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2007 at 2:53pm
Hi Rose. I posted for the first time today also. I am a 21-year survivor. I was diagnosed in 1986 with stage 3, with 22 positive lymph nodes. One of the things I hear about often is that triple negatives respond well to chemo. It certainly seems to have been true for me.

I had a 2-year-old at the time, and I had all those feelings you're having. Will I see her grow up? I lived and breathed my fear of cancer for a few years. I did get help and joined a woman's therapy group that really helped me let go of some of the fear. It never goes away entirely, but boy does it get better with time!  Just know that those feelings are normal. If they take over your life, that's one thing, but if they come and go and you can remember that fear is an emotion like any other--not necessarily based in fact or reality--you'll be all right.

I wish you all the best.
Rena
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2007 at 7:21pm
Hi Rose,  I am fairly new to this site as well. I was a single parent [still am], working and going thru treatment as well. This was 7 years ago. My daughters were 9 and 13. I had just buried my mother from ovarian cancer 2 weeks before my dx. I was 45 years old. I was too old for the young cancer surivors but felt too young for the "regulars". Everyone I met with cancer, face-to-face support groups, ACS outreach etc. were married and majority quit work or took extended leaves of absence. I am self employed and didn't have that option. Besides work did make me feel good, I could pretend life was normal. My co-workers were great during but once treatment was over the attitude was "wonderful, you are all finished now". A lot of my friends who are/were supportive never ask me or discuss treatment/cancer related subjects. I think they just don't know how. I feel I never regained my energy but life does go on. I had come to terms with the whole cancer thing...realizing it is just a crap-shoot. I loved talking with the geneticist when I had testing in 2003. They really made me aware that there are no answers. Just accept and move on. Or at least thats what I got out of it. Until I had a customer about a year and a half ago that was dx. When she finally said something and revealed how gloom her prognosis was and that she was triple-negative I said "what is that?" I don't know how I had never heard that term before. After she explained, I told her, "oh, it's not that big of a deal, that's what I was dx with. Same tumor size and everything". I read the article in Oprah, then there was a small blurb in People. Just this month. The Pink month! About this site. I looked it up and was wigged by all I was reading. I was dx in a time when this didn't have a name and treatment given was very different than all of you are describing now. Somehow last week, I realized, I can't change anything, it is what it is and fortunately it has been 7 years. Thanks Rena, letting me know it has been 21 years doesn't make me feel so isolated with my "older treatment protocol" and that things can be postive. I will be prepared if my cancer comes back but in the meantime, I have life to live.The isolation of having different circumstances and friends/family not being so supportive are very real. I did find great solace in an online group, FPP, that I had somehow gotten connected with.I can see that many in this group have connected. The emotional bond of being with others that have this same shared experience is so uplifting. I hope you can find that here in this group or perhaps another.The emotional toll cancer took on me was great.I wasn't aware of it until after treatment was over and I could look back on what a year I had. It takes a while to let go of all of that. The online support was so instrumental in my healing.I hope that you can find healing too.
 
Kirby
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Post Options Post Options   Thanks (0) Thanks(0)   Quote marathonmom Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2007 at 5:10am

Rena and Kirby,

It is so encouraging to hear stories such as yours.
Thank you for posting.
 
Kirby, you meantioned never regaining your energy back. My main complaint these days is my lack of energy. I am 10 months out of treatment and I still need an afternoon nap. I used to be an endurance runner and today I can barely jog 30 minutes.
I am excited about returing back to work soon but am worried that I might not be able to juggle work, kids ( I have 2 boys, 7 and 5) and daily life.....
I am impressed that you never stoped...
 
Best to all,
 
Oana
 
dx 3/6, stage2, grade3, triple neg, 6FEC, lumpectomy, 0 nodes, 4 Taxotere, rads

Oct 2007 mets to lungs and brain
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CINDY Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2007 at 3:48pm
Hi Rose,
 
I know exactly what you are going thru. I was diagnosed with Triple Negative Breast Cancer in late February 2007. I was just 31 at the time, I turned 32 on October 19th. It was the scariest thing I have ever heard. I never thought it could happen to me. I never did the self exams or had a Dr do them. I went to the tanning bed 1 day & was putting on tanning lotion, I felt a lump. Everyone tried to tell me it was just a cyst or something like that. I knew what it was, I felt it in my heart that it wasn't good. Of course it wasn't. I had a 2 cm lump in my left breast and a 5 cm lump in my lymph nodes. I went thru 8 wks of chemo (Adriamycin) to shrink the lumps and then I had surgery the beginning of July. The lump was pretty much gone but out of 14 lymph nodes 6 of them were still postive for cancer. I then went thru 12 weeks of chemo again (taxol). I have finished that and I started radiation yesterday. He said 8 weeks of that and then we will see how everything has worked. What is so scary is that you can't tell I have cancer by my blood.  All my blood work is good (except during chemo)so I guess i'll have to have Pet Scans or something like that. I have 3 beautiful little girls and they are my life. I am so scared of what the future holds for myself and the three of them. I have pretty much lost all of my friends. They kinda act like I have the plague. But my family, they are wonderful. I couldn't have gone thru this with out them. I hope and pray everyday for the best. That dark cloud that hangs over you and the rest of us, I don't think it will ever go away. But we can always try our hardest to make the day a little brighter. I will keep you in my thoughts and prayers. Good luck for the future and staying healthy.
 
Cindy


Edited by CINDY - Oct 25 2007 at 3:54pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote shellieh51 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2007 at 4:02pm
My heart goes out to you 'young' ones - the mothers with small children.  This disease is a beast at any age but I just don't know how you do it.  I am only 2.5 months out of treatment and continue to have scares but am still trying to think of what I can do to make a difference to those who travel after me.  I am only 56 but hope I can get strong enough to help with cancer patient's children or perhaps one of my girls will want to give back in that way.  No grandchildren in my life yet.
 
I am still working - worked throughout this ordeal - but some days are definitely different than others.  I was totally exhausted today and it took me until 9:30 to get to the office and by 1 I was about asleep but persevered until 3 PM.  I felt like mentally I was really on my game today but walking was a major issue - should have pulled out the cane.  Told my husband that we were definitely eating out and I am medicated and ready for bed no later than 7:30.  Next week I will be traveling for business for the first trip since chemo - long flight to NYC.  Fortunately my husband is going with me - this stoic rock is a little wobbly these days.  I am awaiting cognitive testing -
 
Hugs to allShocked
dx 11/6/2006 1.5cm IDC, Gr3, TN, BRCA-, lump, partial breast rads 1/2007, 4 AC, 12 wkly Taxol. Completed tx 8/2/2007. NED 12/2007. Malignant parotid tumor 4/2008. Clear head 4/09 & bones 11/08 -
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CINDY Quote  Post ReplyReply Direct Link To This Post Posted: Oct 25 2007 at 4:38pm

Thank you Shellieh....

I have went back to work for 2 days a week. Even though it's only 2 days, I get so tired sometimes. I would have worked thru it all and tried full time but I had to get on medicaid and of course you can't work and make the $ that I do and still have help. Like I said, I just finished chemo and I'm going thru radiation now. I have gotten lymphadema in my arm so i'm going thru that now too. I have gained so much weight and I just feel awful. My girls are 13, 8 and 7. They have been strong thru this. I was just asking my daughter tonight if she has any questions and she said no but worries yes. She said mom you could die. I hate that my daughters have to go thru this and I've told them that this is going to be a life long thing. Even if I beat it, I still have to be checked and so do they. Good luck with your testing and stay strong.
 
Cindy
 


Edited by CINDY - Oct 25 2007 at 4:38pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote IamRoseC Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2007 at 2:27pm
Hi Cindy!
 
I see that it has been a couple of weeks since your post.  How are you feeling?  Is your treatment finished, or is there still stuff they wanna do?  With your little ones, it must be so hard.  My 13-year-old is my youngest, and has been my #1 reason to fight this and win.  Like you, my family has been good thru this.  My friends have kinda dropped out of sight.  I think that perhaps it is because no one knows what to do or what to say.   It has been a year since I finished treatment, and I distanced myself from everyone a lot.  I am now talking to my best friend some, but it is not the way it was.  I think it is important to try to get past all of this. 
 
I do know two things for sure.  One, that no one is promised tomorrow.  Therefore, I will try to squeeze as much out of life as I can, for however long I have.  Two, I, like you, have kids who need me, and I refuse to leave them alone!  That has been a wonderful motivator.  I think that everyone who inhabits this space knows how it is for you.  I know how it is for you. 
 
Know, Cindy, that you are in my thoughts and prayers.  You are so young to have to go thru this.  Has your doctor suggested testing for the BRCA gene? 
 
Love,
Rose
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote IamRoseC Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2007 at 2:31pm
Hi Oana,
 
I hear ya!  That ugly fatigue monster inhabited my life, and made me wonder if I'd ever get my energy back too!  I am a year out of treatment now (13 months, technically).  I am just now beginning to feel that fatigue start to lift in a noticeable way.  So here's to hoping you are right behind me!  Big%20smile
 
They say that your energy does come back, it just takes a while.  Now I believe 'em!  Yay!
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote IamRoseC Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2007 at 2:37pm
Hi Kirby,
 
Thank you for your post!  I have been divorced for 7 years, was dx two years ago, finished treatment in September 2006.  I took a year off of work during treatment.  (There was no way in the world I could have worked during that time.  Treatment nailed me good.  lol)
 
I agree with your statement that talking with others who walk this road is a good idea.  Where did you find your online group?
 
Love,
Rose
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote IamRoseC Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2007 at 2:46pm

Hi Rena!

Thank you for posting!  Surviving this long, as you have, gives me hope! 

I think that when one gets this diagnosis, and begins treatment, that feelings get pushed down so that everything that needs to get done does get done.   After treatment, and you begin to live your life again, all those feelings that got buried begin to bubble up to the surface.  That is what I'm trying to deal with now.  I am just now a year out of treatment, so I'm trying to deal with this so that I can get on with it.  What you say about it getting better rings true, so I'll give it some time.  

 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote IamRoseC Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2007 at 2:52pm

Hi Pam!

Thank you for the warm welcome!  Big%20smile

I think that this site is awesome.  It is a perfect place to connect with others who are going thru (and who have been thru) this.  I'm grateful for the chance to talk with others who know how it is. 
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kirby Quote  Post ReplyReply Direct Link To This Post Posted: Nov 10 2007 at 11:03pm
Rose C,  I am unsure how I hooked up with my other online group. I believe I was contacted,so I must have signed up for something somewhere.
 
Oana, since treatment I only run 2 miles, 5 mornings a week. I haven't ever seemed to build up to do more but maybe if I pushed myself I could.I also now run with a partner. I don't think I could keep my motivation without.
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