Scared of Reoccurance |
Post Reply 
|
Page <1234 5> |
| Author | |
kirby 
Senior Member 
Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
 Post Options
 Thanks(0)
 Quote Reply
 Posted: Jan 04 2009 at 4:21pm |
|
Rena, I am so glad you explained. I wondered how you could have known your status.
Terri, Kirby is my actual name, RC was my pin name for the book. Glad you are enjoying the book.
Donna, discussing death is the hard one. It seems if we could be more open about it, perhaps it wouldn't be as fearful. I know I do my share of denial so maybe if I were in a closer position to death I may feel differently.
|
|
|
kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
|
 |
|
|
alaura
Newbie 
Joined: Jan 04 2009 Location: United States Status: Offline Points: 15 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 04 2009 at 5:38pm |
|
I have been reluctant to write to any forums because I am still at the stage where I can't believe this is happening. I am 37 and was diagnosed late last July. I have had neoadjuvant chemo weekly from August until Nov., a 10cm lumpectomy, start weekly chemo again next Friday for 12-16 weeks , then radiation. I was given an aggressive # of an 8 out of 9. This is not something I have seen posted on peoples websites. From the day I was diagnosed in July to 2 weeks later when I started chemo the size of the mass went from 1.2 cm to 4.8. Hence the high number I guess.
I luckily live in Seattle where there are many incredible doctors at Swedish, UW and Cancer Alliance. After interviewing 2 Onc and 3 surgeons, I went with Seattle Cancer Treatment and Wellness Ctr. I chose this place, rather than the others for many reasons, but the biggest is that my Onc now, believes TN should not be treated like regular BC. At this Ctr. I get Acupuncture while doing chemo, see a nutritionist who has me on many supplements to stop neuropothy (sp), etc, and a wellness counselor. My point in writing this all, I guess, is that I am coming out a a severe depression from these same fears. I have never really had depression before so when my eyelashes and eyebrows fell out about 3 weeks ago, it all started. Then I found out I only have 15 days left of insurance on FMLA and have to come up with $800 a month just to keep insurance. All this started freaking me out and spiraled out of control. It started with crying constantly, couldn't get out of bed, nor did I want to. I started finding horrible stories about this disease on the internet and basically was not able to see any other path than death. I am still having problems with it but have talked to a couple of people who said things that made me come out of the deep depression part. ANyway, I guess because this is my first time writing, I am blabbing, I too am just freaking out. Alaura dx: July 28, 2008 37 years old TNBC, 4.7 cm lumpectomy 13 chemo, 12-16 more to go (weekly) neoadjuvant no nodes, stage 3 aggressive scale 8 Blog www.caringbridge.org/visit/alaurakeith Edited by alaura - Jan 04 2009 at 5:43pm |
|
|
|
|
krisa
Senior Member
Joined: May 21 2008 Location: Portland, OR Status: Offline Points: 1090 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 04 2009 at 5:46pm |
|
alaura,
your number 8-9 is, i think, a grade 3 cancer--like most members have. depression---you are not alone in that..most people i know go through depression and anxiety after hearing that they have breast cancer-normal but painful. i wish i could help you with the financial, perhaps someone on this board can give you some helpful information. your onc is a dream come true! |
|
|
|
|
Nancy
Senior Member
Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 04 2009 at 6:06pm |
|
Alaura,
You are not babbling sweetie, you are scared just like any other person who has been dx with cancer. TNBC responds very well to chemo, and from what you have written, it appears that you have a very aggressive onc. That is a really good thing.
We have several gals here on the site who are from the Seattle area. Heather...."myjourney" is one and she is younger than you, and I believe she goes to Swedish.
My daughter Lori finished all her tx last January and has just lost her eyelashes and brows for the 5th time.
Now...to the insurance....I will email Pam who I know will probably be able to find info for you as to help with that. I cannot believe that they can stop your treatments now. That would be unheard of!
Lori also is a Grade 3, as are most of the women who are dx TNBC. Her stats are at the bottom of my post.
I will get back to you...I promise.
Hugs,
Nancy
|
|
|
Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
|
|
|
|
Breastless
Newbie
Joined: Jan 02 2009 Location: United States Status: Offline Points: 22 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 04 2009 at 6:19pm |
|
alaura,
I know exactly how you are feeling. I was diagnosed in September and had both of my Breast removed within days of hearing that my 2.8 cm tumor was cancer. My mammogram was clear in April, so it grew that big in God knows how long. TN is aggressive and fast growing. I too became extremely depressed after I started searching for information on TN Breast Cancer. I also stayed away from forums until just a couple of days ago, when I found this site. This is the hardest thing I have ever had to go through and it does feel like it is the end at times. I began my chemotherapy treatments in October and I still have two more to go. I am afraid of the future now and I am a different person both physically and emotionally. I hear that it gets better as time puts distance between diagnosis and treatment. I can't wait to feel like I can live again. I too was faced with my FMLA running out but I was able to get more time through the leave pool where I work. Worrying serves no purpose. I also found out that the Oncology office where I am treated sees patients even when they are not insured and even if they can't pay. They do not turn anyone away. I didn't know this until one of the councelors there told me. I think you should ask, maybe the center where you go, will continue to treat you even if your insurance lapses. You shouldn't have to worry about this with everything else you are going through. Did you find your lump yourself? I found mine in the shower. You will get through this one way or another. Lean on those that lift you up and help you feel better. I have always been a giver, so it was hard on me to depend on others. Sometimes you just have to scream and cry and get it out. It's ok to be weak. I have just about lost all my eyebrows and eyelashes too. The hardest for me was losing all of my hair and not having my breast. My femininity went out the door. I know what it feels like to cry and not feel like you can stop. To not want to get out of the bed and not see or be with anyone...I understand. It is normal, I think. I applaud you for reaching out.
 Everyone on here has been great and I know you can gain some support from this site. Write anytime. Love and Hugs-Karen |
|
|
Karen Age 43
dx 9/4 Double Mastectomy 9/11/08 dx TNBC 9/22/08 IDC Stage 2 Grade 3 Tumor sz-2.8CM Tax/Cytoxcin X6 every 3 wks 10/16/08-01/29/09 Lymph nodes-negative BRCA-Negative |
|
|
|
|
alaura
Newbie
Joined: Jan 04 2009 Location: United States Status: Offline Points: 15 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 04 2009 at 6:39pm |
|
Thanks for your responses. My Onc. is very aggressive. By the time it is all said and done I will have had about 29 weekly treatments. I have not had chemo in 2 months because of the surgery and now I know what it feels like to be off it for a while. I still do not have all of my energy, but I have a taste of what it will be like.
Everyone keeps telling me to join a support group but there are no triple neg. groups I can find in Seattle and I don't feel like any other cancer or BC groups will satisfy that support feeling. Maybe I am wrong but I feel like when people say they have/had BC, I ask if it was TN. When they say no my first thought is we don't have the same kind of cancer, though it is technically in the same place. As far as your ? about the lump, I actually felt a pain in my breast first. From what I understand it is not common to have pain, but thank god I did. I was scheduled to have shoulder surgery from a snowboarding accident, the day after I was diagnosed. When I had my pre-op with my shoulder surgeon I kind of jokingly asked if he and the cyst doctor could do the surgery at the same time. I just knew it was a cyst. Obviously not a cyst. I think now the reason it hurt was because it was in my pectoral muscle. I responded to your caring bridge. I too am on there. Your wig looks great. The week after I found out, I had a wig made of my own hair. It was cut and made the same day. Pretty awesome. dx: July 28, 2008 37 years old TNBC, 4.7 cm lumpectomy 13 chemo, 12-16 more to go (weekly) neoadjuvant no nodes, stage 3 Edited by alaura - Jan 04 2009 at 6:40pm |
|
|
|
|
Nancy
Senior Member
Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 04 2009 at 7:05pm |
|
Alaura,
I sent Heather a private message telling her that you live in Seattle. I know that she will respond. I also sent an email to Pam concerning your insurance, but as Karen has said...they will not deny you treatment.
Hugs,
Nancy
|
|
|
Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
|
|
|
|
myjourney
Senior Member
Joined: Jul 06 2008 Location: Seattle, Washington Status: Offline Points: 211 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 04 2009 at 7:06pm |
|
Hi there Alaura!. I live in Seattle, and would love to be here for you. I'm going to PM you right now and give you my phone number. Heather
PS This time next year we can go snow boarding together! How's that for something to look forward to! Edited by myjourney - Jan 04 2009 at 7:38pm |
|
|
33 year old
1.8 cm tumor/Node Neg Lumpectomy 7/1/08 BRCA 1 & 2 Negative AC DONE!! 9/17/08 Four of 'em Taxotere done! 11 of 12 ~1/31/08 33 radiation My blog: heathersjourneytohealth.blogspot. |
|
|
|
|
rena
Senior Member
Joined: Jul 06 2007 Location: United States Status: Offline Points: 181 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 05 2009 at 9:33am |
|
Hi again everyone. Donna, good to "see" you!
All the fear and uncertainty and depression is so hard, but also so normal. And it does get better with time. I know--easy for me to say because I've HAD a lot of time. It takes faith--whether it's religious faith or just a belief in yourself or in whatever you believe in. What other choice is there? Either we believe that we can do this, get through this, and then get on with life, or we don't. I'm not being a Pollyanna--it's not really either/or. There are good days when we think, "I'm going to be fine," and then there are the darker days when the fear takes hold. Now I'm going to say something that you may think is weird, but it may be the most important thing I've learned about fear in the past 20 years. My instinctive reaction to fear when I feel it is to try to push it away--to medicate with food, to distract with TV, or even engage in some healthier activity, such as taking a walk. The problem, though, is that I can't push away fear. I have to embrace it--it's a part of me, and trying to push it away is like trying to push away of piece of myself. What helps me more than anything is to see the fear as a child. Would I push away a frightened child? No, I would embrace her and comfort her. When I do that with the fear (both in my thoughts and physically--hugging myself), it makes the fear dissipate much more quickly than when I fight against it. Okay, maybe I've lived in hippy-dippy California too long, but I'm telling you--it really has worked for me and made it much easier to deal with the fear. (By the way, I still medicate with food and TV at times--and I enjoy it!) I'm so happy for you that you have the Internet and sites like this one. What I wouldn't have given to have the kind of support you have here. But in 1986, no Internet. People were only starting to talk openly about breast cancer. Nancy Reagan's diagnosis in 1987 really helped with that. I was interviewed on local TV to talk about my experience. Watched the video of that recently--boy, was I young and skinny! As far as talking about death, I think we all have our own way of coping. Some people feel better and less stressed if they "get their affairs in order." I've been doing that for the past 22 years, and I STILL haven't made that video for my daughter. She was 2 when I got the idea, and she's 24 now. Life gets in the way of thinking about death--my wish for you is that that's exactly what happens for you. Just keep living life. Unless we get hit by a truck (or thrown off a bridge, which my sister has threatened to do to me), we always have time to plan for our deaths. I think it's more important to plan for living. That's just me, though. We're all different. OK, I'll shut up now. I'm sending hugs to you all. Love, Rena |
|
|
|
|
Diamond2Wheels
Groupie 
Joined: Nov 13 2008 Location: NY Status: Offline Points: 98 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 05 2009 at 12:54pm |
|
Wow Rena! Well said! You're like an intermission that tell you to stretch your legs and get some pop corn! Yes, stuff happens but mostly life...we're all in it and deserve to treat ourselves accordingly! Oh, and about your sister |
|
|
Tia-dx 2/14/2006
5/4/2010-L Mastectomy & Pectoral muscle removed & lymph nodes - had Gemzar, A/C, Taxotere, Navelbine, Xeloda, Doxil On PARP clinical trial at moment. |
|
|
|
|
kmartin
Senior Member
Joined: May 02 2008 Location: Central Maryland Status: Offline Points: 126 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 05 2009 at 1:07pm |
|
Hi Karen,
I have two examples of women I know with > 5 years survival without recurrence....
My boss who was 58 when dx with TNBC, 2 positive nodes had lumpectomy, CT and RT
My aunt who was 45 when dx with TNBC, 3 positive nodes had bilateral mastectomy, CT and RT ...
Both had Taxotere, Adriamycin and Cytoxan and 33 RT treatments.
It does help to have concrete examples in your life...use mine : )
Also, when the negativism creeps in to my mind, as it does for most of us, I repeat to myself "Not helpful" .... this is my mantra against these thoughts. I heard this from Randy Paush's wife....this is what she says to herself when the worries about raising her 3 kids alone enter her mind....
Kathy
|
|
|
Round 1 - 2/8/08
IDC, Stage 2, Grade 3, TN (R) Lumpectomy, ax nd 3/11/08, 4/33 positive TAC x 4, AC x 1; RT x 33 genetic tests - |
|
|
|
|
Eileen
Senior Member
Joined: Jul 23 2008 Location: United States Status: Offline Points: 106 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 05 2009 at 1:33pm |
|
Kathy thanks for the concrete examples from your family. That really does help ward off some of the nerves when all you seem to read is of the reoccurances of TNBC. I really do appreciate see survivors listed in black and white. Thanks again. Eileen
|
|
|
DX:2/08,3/08 lumpectomy with SNB, clear margins, no lymph node involvement, 4 cycles A/C (dose dense) every 2 weeks, 4 cycles Taxol (dose dense) every 2 weeks, 33 rads finished 9/08, BRCA 1 and 2 neg
|
|
|
|
|
thinkpositive
Senior Member
Joined: Jun 24 2007 Location: United States Status: Offline Points: 111 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 05 2009 at 2:48pm |
|
Breastless, I can appreciate where you are coming from. My tumor grew very quickly once I found it. We tried chemo to shrink it and it continued to grow and I decided to move ahead with a double mastectomy. I have not regretted it one time !!! I had my surgery (a tram) in July of 06 and feel somewhat normal now except for the feeling in my breasts. I would absolutely encourage you and everyone in our situation to push for follow up. I did have a recurrence in my lungs which was only identified early because my onc did a follow up xray and then scans when spots showed up on the xray. You have to be your own advocate. If your body tells you something doesn't feel right insist on the necessary tests. I had no symptoms of the metastasis in my lungs - I am grateful that my dr. did the follow up. Hopefully you are DONE and will not have any recurrence but better to be safe. Hugs and prayers !!! |
|
|
dx 3/06 stg II 0/7 lymph
bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08 Brca neg Avastin Xeloda 10/08 Curagen 2/09 Ixempra 6/09 Lung Mets Gemzar/ Carboplatin 9/09 |
|
|
|
|
singlemom71
Newbie
Joined: Jan 08 2009 Location: United States Status: Offline Points: 16 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 08 2009 at 1:51pm |
|
Hi all, I want to introduce myself as I am new to this site today and have been reading and crying through some of the posts...My name is Simone, I just turned 38 a few days ago, I live in Arizona, have an 8 year old daughter, am a single mom, and I was diagnosed with TNBC July 2008. I had a lumpectomy; I then opted for a bi-lateral mastectomy after learning that I carry the BRCA gene. My breast surgeon wanted me to be gene tested because of my age and because my mother had it at 41. She is still living and has been in remission for 25 years. The BRCA gene also puts me at risk for ovarian cancer - the undetectable...so I'll be having my ovaries removed this year - I already have a preview of menopausal hot flashes/night sweats because of the chemo right now! I completed 4 of the AC and have 2/4 Taxotere treatments left. I am currently undergoing breast reconstruction as well - my expanders are filled bi-weekly by a plastic surgeon and when I reach my size I'll be going through another surgery to get the actual implants. I can empathize with all of you women who had lymph nodes removed (I had 23 with one positive)who've lost feeling in their arm and get this tightness around the underarm chest area. It is strange and it immediately makes me think of lymphedema. The chemo is rough, you know good and bad days; I've lost all of my hair and some eyelashes and eyebrows but I never have to shave my legs! My daughter is very supportive and that allows me to focus on getting well and living life. I am thankful that I am doing everything I can to try and beat this thing, educating myself and speaking with other strong women. I am strong in mind and body and I want to be there for everyone going through this.
Take care |
|
|
|
|
krisa
Senior Member
Joined: May 21 2008 Location: Portland, OR Status: Offline Points: 1090 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 08 2009 at 2:00pm |
|
this disease does make us find out how strong we are! we are strong--don't mess with us!
did your doctor send you to a PT who is licensed in manual lymph drainage?, and can help you with exercises to strengthen your arm, shoulder, etc. plus exercises that help with lymph drainage.  |
|
|
|
|
trip2
Senior Member
Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 08 2009 at 6:02pm |
|
Hi Simone,
What a wonderful story about your mother!
We are so glad you have joined up with us and it looks like you are almost thru with your chemo, I certainly understand the good and bad, we all do but you sound like you will get thru it just fine.
Best wishes to you and I hope you'll feel free to just jump in, someone is always around.
Edited by trip2 - Jan 08 2009 at 6:04pm |
|
|
Stage 2 2003
Stage 1 2007 BRCA 1+ |
|
|
|
|
singlemom71
Newbie
Joined: Jan 08 2009 Location: United States Status: Offline Points: 16 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 12 2009 at 2:09pm |
|
Hi there, through my insurance at UHC in Arizona, they could not provide a visiting nurse to me so I drained them myself. It wasn't so bad. I guess the loss of feeling is typical? I work out regularly and would be interested in some exercises for this particular problem.
thanks !
|
|
|
|
|
singlemom71
Newbie
Joined: Jan 08 2009 Location: United States Status: Offline Points: 16 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 12 2009 at 2:09pm |
|
Thanks for the warm welcome. Tell me, how does everyone get their information on the bottom of the posts?
thanks
|
|
|
|
|
Suzanne
Senior Member
Joined: Jun 13 2007 Location: San Francisco Bay Area Status: Offline Points: 191 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 12 2009 at 7:42pm |
|
In order to add information at the bottom of your post, click on "Settings" at the top of the screen. Then click "Edit profile". You then can add any information you want in the box to the right of the word "Signature". Below that, choose "Yes" where it says "Always attach my signature to posts". That should do it.
Good luck!
|
|
|
1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07
|
|
|
|
|
Suzanne
Senior Member
Joined: Jun 13 2007 Location: San Francisco Bay Area Status: Offline Points: 191 |
Post Options
Thanks(0)
Quote Reply
Posted: Jan 12 2009 at 7:55pm |
|
Karen, I also have a teacher friend who had TNBC and just passed the five year mark without recurrence. I had encouraged her to post on the website, but I don't think she ever did. It seems that women with current problems post while those who are a numbers of years out without recurrence/mets tend to move on. Maybe this kind of skews one's picture of triple negatives.
I just passed my second year anniversary and am still nervous and worried. I figure I'll feel better after year five.
Suzanne
|
|
|
1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07
|
|
|
|
Topic Options
what a clown! Hugs of Love, Tia|
Post Reply
|
Page <1234 5> |
Tweet
|
| Forum Jump | Forum Permissions You cannot post new topics in this forum You cannot reply to topics in this forum You cannot delete your posts in this forum You cannot edit your posts in this forum You cannot create polls in this forum You cannot vote in polls in this forum |