Scared of Reoccurance |
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Suzanne 
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Joined: Jun 13 2007 Location: San Francisco Bay Area Status: Offline Points: 191 |
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 Posted: Jan 15 2009 at 8:20pm |
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Hi, Breastless,
This has been said before, but I think that it deserves being repeated, "Life eventually will become easier." When I first found out that I had cancer, I wondered if I would be alive in three months. I would be awake, crying in the middle of the night, wondering how this could have happened to me. We all tend to imagine the worst, and that's easy to do when the doctors don't know before surgery if nodes are positive and if the cancer has spread. I kept thinking that I could be in terrible shape and maybe the doctors weren't telling me just to be kind. Then on to treatment. Chemo isn't easy, but at least one has the satisfaction of knowing something is being done to improve the situation. Compared to chemo., radiation is ridiculously easy. After that, worries tend to set in again. One joins the "Watch for symptoms" program. Every ache and pain could mean the cancer has returned. Over time, however, the cancer worries and thoughts move further to the back of one's brain. Sometimes a day goes by and I don't think about cancer at all.
As you move along your recovery road, we're all here to root you on. My journey is different from yours, but we all have a basic understanding of what you are going through.
Take care.
Suzanne
Edited by Suzanne - Jan 15 2009 at 8:30pm |
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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
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jan 16 2009 at 5:42am |
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Hi Melissa,
I can tell by your post that you will be just fine and believe me you are not insane with any of your thoughts, we all have them.
Keep us posted on what's going on and how you are doing.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jan 16 2009 at 5:50am |
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Hi Susan, Congrats on finishing your chemo. That is a milestone that is history now, good for you. I understand your feeling your time sleeping and crying was wasteful but look at it as a time for your body to heal and recover. Unfortunately alot of us go thru this so don't be hard on yourself.
Things will get better for you now, let us know how you are doing.
This is definitely a scary thing to have happen but you'll be fine.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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stephanie90027
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Joined: Dec 15 2008 Location: United States Status: Offline Points: 16 |
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Posted: Jan 16 2009 at 3:03pm |
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Hi Breastless...
I am 43, mother of a 6 year old, and dx with TN on 9/11/08. I had 2 pos nodes. My onc and surgeon (after seeing clean scans) decided that aggressive chemo before BDM would be best for me. I've finished 4 rounds of AC and 7 of 12 Taxols and 6 more Carbo Platins. My onc says that carbo is not standard treatment for early stage (i was stage 2) bc, but studies out of other countries are showing that adding carbo is very helpful in preventing recurrence. You may want to talk with your onc about that as it sounds like you're like me and being as AGGRESSIVE as possible in your tx. I too freaked out when i began to understand what TN is vs. the "other" bc's. I couldn't get out of bed, couldn't stop crying, was consumed by fear and worse, by a feeling of sadness and loss that ran deeper than i thought possible. I then spoke with my onc - who really put it in perspective. She said "TN now has a name,,.but its the same "young woman" cancer that has been around forever. TN responds very well to chemo and you'll beat it and it won't come back." She was so sure, so calm, it made me feel much better. Of course i know it could come back, but i feel that nutrition and lifestyle changes can dramatically impact the odds. And even tho i'm still in a VERY long course of chemo (started on 9/30/08 and will end 3/10/09) followed by BDM and recon, THEN radiation, i feel very positive. I feel that i will survive and have a long, blessed life that will be more meaningful in a way having been through this. I understand the meltdowns. I understand the blinding fear. I still get it too (ativan helps). But even now, in the middle of treatment and very bald, i just know i'll be fine and see my daughter grow up. I love all these amazing women that are here to help us newbies manage this life-changing event. But this will pass and you will continue to live and thrive. PS: On the diet - all i've read is a very high fiber (30 to 35 grams a day) and extremely low fat diet is the best to avoid recurrence. I'm going macrobiotic personally - no meat, lots of fresh veggies and fruit, whole grains. I will miss choc chip cookies the most - but a small price to pay! |
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43 yrs old. DX 9/08 IDC stage 2, 2 nodes, braca+. Lumpectomy with clean margins, clean scans. Chemo = 4AC's, 12 Taxols and 12 carbo platins followed in April with DBM and recon then rads.
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sticks04
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Joined: Nov 27 2007 Location: United States Status: Offline Points: 2 |
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Posted: Jan 16 2009 at 4:21pm |
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Thank you for posting that....I needed to hear that there are people out there that do survive longterm with TNBC. I first visited this site when I was diagnosed in 11/07 and could not bring myself to return after reading some of the blogs and information on the site. I was too distraught to hear about this disease. I am hopefull that I too will be a longterm survivor like you! DX 11/07 Stage I - T1C, N0, M0, Lumpectomy, 8 TX of dose dense chemo (4 Cycles of AC, 4 of Taxol), 33 TX or radiation.
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Eileen
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Joined: Jul 23 2008 Location: United States Status: Offline Points: 106 |
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Posted: Jan 17 2009 at 3:50am |
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stcks04:
you have about the same stats as I do with the same treatment. you are about 6 months ahead of me. this is great with this site you can actually talk to people that understand our fears and what tn's go thru. It means alot to hear you are still well. keep me posted. Have you had any other scans done since you treatment ended. Eileen
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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
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prissy
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Joined: Apr 06 2008 Location: United States Status: Offline Points: 52 |
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Posted: Jan 17 2009 at 1:32pm |
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I am 51 and afraid of reoccurance also. I had neo-adjuvant chemo , then the dbl mast in June of 08. Other than polymyalgia rheumatica--pain and stiffness in back of head and shoulders-- and some tingling, numbness in my hands--I guess I am doing pretty good.
Still stressed, still suffer from fear and lack of confidence--which I never had before bc. Plan to have reconstruction this summer. I teach public school and don't need to miss. I still am fatigued often, depressed often, but I take it one day at a time and try to remain positive.]
I just read that one woman's doc told her she had a possibility of 40% reocurrance rate! Damn, that doesn't sound good.
Do any of you know if they know if reocurrance rates differ if you are caucasion or African-American? I doubt they know. I have no family history. Just lucky I guess.
Also, do any of you have trouble with handwriting for long periods of time?
My hand cramps up and my handwriting looks like chicken-scrawling!
Prayers to you all,
Prissy
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PRISSY 53 y/o cauc dx10/07 no nodes GR3 St IIb CT+4,ADRYx4 ClinTrial Avas#NCT00203503
Remarried 7/11 LAST CHEM 5/08 DBL/MAS 6/08 2/09 TIA 55%BLOCK LCAROTID.Divorced 7/30/10.No reconst yet |
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thinkpositive
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Joined: Jun 24 2007 Location: United States Status: Offline Points: 111 |
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Posted: Jan 17 2009 at 1:58pm |
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Prissy, I hope you will gain confidence about your ability to fight this disease. I am older than you and am on my third year of survival. We can beat this even if we have to endure chemo treatments to hold off the recurrences. Hang in there and enjoy every day. You can be an inspiration as a teacher who is stronger than cancer !
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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 |
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krisa
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Joined: May 21 2008 Location: Portland, OR Status: Offline Points: 1090 |
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Posted: Jan 17 2009 at 2:07pm |
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prissy,
i don't think there is a difference in survival/recurrence in regard to race. my oncologist said if i had chemo, my chance of survival went up to 77%..i was stage 2, grade 3, 2.2cm tumor, no lymph node involvement. we all have our good days and our bad days! it helps to remember that none of us are alone in those feelings.  |
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prissy
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Joined: Apr 06 2008 Location: United States Status: Offline Points: 52 |
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Posted: Jan 17 2009 at 2:14pm |
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Did you have Rads? I put that off because I was told it would make reconstruction more difficult for me this summer. My docs didn't act like it made any difference when or if I had radiation. Then I read that if you did not have the rads during a certain amount of time, then there was no benefit to having them after my reconstruction.
I am really confused about that, too.
Thanks for encouragement!
prissy
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PRISSY 53 y/o cauc dx10/07 no nodes GR3 St IIb CT+4,ADRYx4 ClinTrial Avas#NCT00203503
Remarried 7/11 LAST CHEM 5/08 DBL/MAS 6/08 2/09 TIA 55%BLOCK LCAROTID.Divorced 7/30/10.No reconst yet |
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krisa
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Joined: May 21 2008 Location: Portland, OR Status: Offline Points: 1090 |
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Posted: Jan 17 2009 at 2:21pm |
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yes, i had rads.
i read that report about the time factor...i think it is faulty and didnt' follow the logic of it. did the report say that we MUST have radiation 20 weeks after diagnosis and if we don't the outcome is not as good? how did they determine this equation? |
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sibu
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Joined: Jun 27 2008 Location: FL Status: Offline Points: 660 |
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Posted: Jan 17 2009 at 2:43pm |
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Hi Prissy,
My thoughts and prayers are with you. The long-term side effects can really drag out. Like running a marathon. Long after all the well-wishers are gone and the hair grows back in, we are left to deal with these issues. Just wanted to be clear that my onc. gave me a 40% recurrence rate, based on several factors including positive nodes, positive BRCA status, age, grade, and even close family history (siblings). I'm guessing this puts me in the higher range amongst all TNs. Sorry, didn't mean to freak people out with that. |
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Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
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Suzanne
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Joined: Jun 13 2007 Location: San Francisco Bay Area Status: Offline Points: 191 |
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Posted: Jan 17 2009 at 3:20pm |
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Hey, Prissy, I'm a teacher, too, and have noticed a handwriting change for the worse. I used to have great printing, but now it is really wiggly. My hand feels as though it kind of cramps up. I don't know if it is due to the chemo. or just a sign of getting older.
Suzanne
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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
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prissy
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Joined: Apr 06 2008 Location: United States Status: Offline Points: 52 |
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Posted: Jan 17 2009 at 4:08pm |
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I will ask at my next appt. about the 20 week window to get rads and let u know!
I am trying to hang in there. I am going thru a "non-traditional" teaching licensing program and have taken the PLT twice and haven't been able to finish it because of my handwriting. I may ask for some kind of accomodation to give me more time, and a break.
I am getting so discouraged with the whole public school licensing crap in Arkan sas. After all my degrees, experience . .it comes down to me passing a standardized, timed test on theory.
I am not giving up--I have to have the insurance. But the stress is really getting to me. I want to curl up and stay in bed. Teaching in public school, high school especially is SO HARD. Of course, I was diagnosed 6 weeks after I started teaching in 07. Speech and Drama---where you need the most energy and enthusiasm. Mostly I just come home and crash.
Thanks Always,
prissy
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PRISSY 53 y/o cauc dx10/07 no nodes GR3 St IIb CT+4,ADRYx4 ClinTrial Avas#NCT00203503
Remarried 7/11 LAST CHEM 5/08 DBL/MAS 6/08 2/09 TIA 55%BLOCK LCAROTID.Divorced 7/30/10.No reconst yet |
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mommy2bigblueye
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Joined: Jan 02 2009 Location: United States Status: Offline Points: 26 |
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Posted: Jan 17 2009 at 4:13pm |
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Hi Ladies,
So I can't say enough how much reading all the posts on this site means to me. It is so comforting to feel that people understand what I am feeling and thinking even though I get tired of expressing the same things sometimes to my friends and family. I am blessed to have an amazing support system, but try as they might it;s hard for them to truly understand sometimes. It's nice to know I am not alone. On a happy note...my sentinal node biopsy was Friday...on my son's 1st birthday and I walked into the operating room exactly one hour before I gave birth to my son last year (also in an operating room via c-sect). It was a very eerie and disconcerting feeling...but the prelim results are in and they say my lymph nodes are clear. I may have missed spending my son's bday but I got to bring him home the best present...and for the 1st time I really believe that I could be okay through all this...and I am going to enjoy this moment, this feeling as long as it lasts, I wish all u wonderful ladies the same moment of peace I am experiencing right now and wanted to share with you. Melissa |
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Dx 12/9/08, IDC, bilateral mastectomy and lat flap reconstruction 2/9, Stage IIa Grade 3, 2.4cm, No nodes
Finished Chemo 7/23- 4xAC , 12xTaxol plus Avastin; BRCA1+, OOPH 11/09 |
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elizabeth
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Posted: Jan 18 2009 at 6:50pm |
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Hi Melissa,
What wonderful news!
Like you, I also found a lump shortly after I stopped nursing my youngest child. It was so hard to get my head around the diagnosis at first and devastating to feel my life was in jeopardy at age 39 with young children to care for. My heart goes out to you.
I don't know if others felt the same way or not, but I think having young kids made it so much easier for me emotionally to find the strength to pursue the most aggressive treatments for their sake. Even when I was exhausted from chemo, the pure love of my toddler's hugs kept my spirits high.
I'm almost 2 years out from diagnosis now, and so far, so good!
Best wishes,
Elizabeth
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lumpectomy 4/07; 1.8cm TNBC stage 1c grade 3; chemo: AC, Abraxane, Avastin; rads 9/07; bilat mastectomies 9/08; oophorectomy 1/09.
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pwcassidy
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Joined: Jan 19 2009 Location: United States Status: Offline Points: 7 |
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Posted: Jan 19 2009 at 5:28am |
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Hi,
I am new here and have just been diagnosed with mets to other lymph nodes (left side, cancer had been on my right side) and 5 spots in my bones. just starting out on this path. chemo starts this week with carboplatin and avastin. how is everyone else doing? |
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mommy2bigblueye
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Joined: Jan 02 2009 Location: United States Status: Offline Points: 26 |
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Posted: Jan 19 2009 at 8:21pm |
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Elizabeth,
it is so true. having my kids and being that they are so young still has been a blessing in some ways. My kids need me so much there is little time to sit and dwell on the fears I know are there. They force me to stay focused on trying to remain positive and doing whatever I need to to make sure I beat this. My daughter keeps asking to kiss my boo-boo everytime I come home from the dr...you can't beat that!!! That being said, preparing for this surgery...worrying about the kids has been the hardest part. I am having BDM and lat flap reconst. The recovery is supposed to be very intense. At the least there is no lifting at all 6 wks...my youngest still is not sleeping thru the night so I will be having help pretty much 24/7...simply put, i am trying to learn to be okay with this. melissa |
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Dx 12/9/08, IDC, bilateral mastectomy and lat flap reconstruction 2/9, Stage IIa Grade 3, 2.4cm, No nodes
Finished Chemo 7/23- 4xAC , 12xTaxol plus Avastin; BRCA1+, OOPH 11/09 |
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Terri
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Joined: Nov 12 2007 Location: FL Status: Offline Points: 578 |
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Posted: Jan 20 2009 at 12:45pm |
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Hi pwcassidy,
Welcome and so sorry that you had to join us with your diagnoses. You might want to post in the recurrence/mets area of the site also. There are many women here in your position who can give you much love and advice during your journey. There are also alot of tips about chemo, questions to ask your doctors, etc in the resources area. Is this your first time going through chemo? I wasn`t sure since you said the breast cancer had been on the other side. I finished treatment in late April and am still recuperating and trying to get my energy back. I have had a few setbacks such as getting shingles but always moving forward! I am lucky enough to be able to work part time and my employer has worked with me through treatment until now. Working a little through chemo & radiation helped me feel a little more "normal" but everyone is different. You have to put yourself first right now and rest when you need to. Surrounding yourself with caring positive people also helps alot. Feel free to tell us more about yourself and I`m sure others will join you. Hugs, Terri |
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IDC DX 8/17/07 (age 41)
Stage 1 Grade 1-2, 1.35 cm 2 nodes neg, Lumpectomy 10/07 Chemo: FEC 100 x 6, 35 rads BRCA 1/2 NEG PET/CT & Brain CT Nov 09 Brain MRI Aug 2012 NED |
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pwcassidy
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Joined: Jan 19 2009 Location: United States Status: Offline Points: 7 |
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Posted: Jan 20 2009 at 1:54pm |
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I'll check out that section, thanks. I had chemo last year from feb 6th through may 15th. I did 4 doses of AC and 4 doses of taxol, every other week for 8 weeks, then i had a mastectomy, then radiation. This chemo will be different, but I handled the last chemo pretty good after the first session.
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