Scared of Reoccurance |
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Breastless 
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Joined: Jan 02 2009 Location: United States Status: Offline Points: 22 |
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 Topic: Scared of ReoccurancePosted: Jan 02 2009 at 12:54pm |
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I have triple negative breast cancer and had a double mastectomy in September. I am currently taking chemotherapy (Taxotere and Cytoxin) every three weeks. I have 2 remaining treatments. I recently asked my Oncologist about reoccurance and outcome of woman with this type of cancer and was shocked when she told me it was 30%. I am so afraid of living with the worry of this. I also believe that a nerve was severed during the removal of my breast. My oncologist said it could be a year before I have normal feeling in my arms. My chest feels like I am wearing body armour. I need some encouragement. Is anyone out there feeling like me?
Edited by Breastless - Jan 02 2009 at 12:56pm |
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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 02 2009 at 1:44pm |
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Hi Breastless,
Welcome to the site. I too am struggling with thoughts and fears of recurrence. I finished all my treatments the end of April 08. My onc doesn`t believe in doing scans until 2-3 years out of tx so I have to hope my body is CLEAR of bc. I can tell you that I wish I would have had a double mastectomy like you. My surgery happened before I even met with my onc so I was told the outcome was the same. There`s been a study and thread here that is controversial but seems to indicate that double mast is better at preventing recurrence that lumpectomy. So you might be in a better position already!
 You are also getting Taxotere which some studies conclude can help us TN`s more than standard chemo. So you have more going for you than you know sweetie!
I can`t speak to your lack of normal feeling in your arm. I`m sure some others here will chime in. I hope it gets better for you everyday.
I am trying very hard to enjoy life and not worry about recurrence & mets. I still think about it every day. But I know that worrying about things can sometimes make it happen and wastes the time we have. I am about to start yoga and pilates to try to feel better physically and hopefully it will put distance between dx and tx and a healthy life.
Best wishes
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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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Jan 02 2009 at 3:06pm |
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Good evening Breastless,
Honey I bet there isn't a woman on this board that isn't scared of this disease and what might happen. But I can tell you that for me and others that have discussed it time is your key. The further you get from your treatments the less space it will have in your mind. If you let it overwhelm you then cancer wins and you don't want that, you want control of your thoughts.
So when the thinking or worrying gets rough, go do something to distract you, you might have to work at it bit by bit but it will slide to the back of your mind and no it isn't going to completely go away.
May I ask your age? Have you had the genetic testing, family history?
What are you statistics?
For genetic testing info check out http://www.facingourrisk.org Next time you see your Onc would you ask him where he/she got that number? Unfortunately they still know so little about tri neg I'm interested in where these figures are and how they are based. Whatever the case, they (the docs) cannot know for sure that is something written in cement for you. Most of what you read on the internet is old info to be ignored. You have to stay within the confines of current to maybe 3 yrs back.
I had a lumpectomy in 03 and a bilateral mastectomy in 08. Both areas under my arms have the weirdest feeling and I don't know really if it every goes away completely. Usually they remove some nodes to check for possible spread so therefore your lymph system isn't flowing like it should be.
Maybe someone who has had a mastectomy farther out than you or I could tell us if this is always this way. And yes I feel like a tight band is wrapped around me but it has lessoned up with time but I still am aware that things are different now physically.
It's not that far from when you had your surgery so you've still got some recovery to get thru. I'm glad to hear you only have 2 treatments left, then you can work on getting you back.
 Write anytime, ask questions, vent, cry, tell a joke, we don't care.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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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 02 2009 at 3:08pm |
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Hello Breastless and welcome!
Yes, I had a similar experience after visiting the surgeon who told me "bc is no longer considered a life-threatening disease." Next stop, onc.'s office, where he broke the news about being triple negative, and told me my chances for recurrence were around 40%! TN is not like other bc--it is often hereditary, often hits young, is very aggressive. It can take the wind out of you to hear that. Now for the encouragement part: TN do respond better to chemo. We know that after bilat. mast., chemo and radiation, we generally don't have to take chemo pills long-term. In a sense, it may be a plus to know that we have to take things into our own hands with diet, lifestyle and mind/body/spirit work. You have found the best resource possible in this forum, for any questions you have about tn as well as an outpouring of love and support. Come back often! Best, Donna PS It may be helpful to add your 'stats' with your signature, so people can know where you stand when they reply. |
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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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kirby
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Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
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Posted: Jan 02 2009 at 7:08pm |
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Terri & Breastless,
It is not always doom & gloom although when so new it feels that way.I was dx well before they even recognized TN. Tx then was different as well. I received half the amount of chemo they now seem to recommend and before dose dense as well. I post on occasion to let you know there are long timers out here that have not had reccurance and have only had lumpectomies. I have also never had a scan or tumor markers.My onc who I do have a lot of faith in doesn't believe in them for random testing. Edited by kirby - Jan 02 2009 at 7:17pm |
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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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 03 2009 at 4:44am |
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Kirby,
It`s ironic that you posted on this because, believe it or not, you`re the one I think of when I find myself worrying about recurrence. I`ve even told my mom & husband about you and the treatment you had. Thanks for being an inspiration to me Kirby!! |
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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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trip2
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Posted: Jan 03 2009 at 5:39am |
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Thank you Kirby, we all like to see your posts.
Do you still have check-ups from your Onc and if so how long does this go on?
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Lauriejn
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Joined: Oct 18 2008 Location: United States Status: Offline Points: 178 |
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Posted: Jan 03 2009 at 6:00am |
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Breastless: Its a strange thing this trip neg. I was diagnosed in October, hadn't started treatment yet when I was diagnosed w/recurrence already- bone and supraclavical lymph nodes...which led to my question- could this be a recurrence if the original wasn't gone yet? HA
The point- worry leads us to believing it will happen- self fulfilling prophecy. That sort of takes life away from us from living to the fullest. Take each day at a time, live your life. Let your doctors worry, and you let them know when you feel something isn't right in your body.
Stay positive- peace.
Laurie
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Dx Oct2008- IDC Gr 3/Stage 3C
Mastectomy 11/7/08- 6/21 nodes Bone Mets dx Dec 2008-Stage 4 Albany, NY BRCA neg |
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pppinaz
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Joined: Aug 29 2008 Location: United States Status: Offline Points: 13 |
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Posted: Jan 03 2009 at 6:37am |
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Breastless, and Beautiful (that is what I will call you. Just like a stranger to take liberties huh!!!??
 Lets see, I was diagnosed on 8/22/08. Between then and 9/5/08 had every test in the world and had my first chemo in less than 2 weeks from diagnoses. My life was a whirlwind. My tumor which was approx 4 cm in February was ignored by my OB and written off as fybrocystic change (idiot). So 6 months later it was 6 cm and my oncologist decided that dose dense neoadjuvant (pre-surgery) chemo was necessary to attempt to shrink tumor and halt the advancement as was already node positive. Thank God this worked for me though it hasn't been easy. I had a double mastectomy on Dec 1st, and still feel weird. They removed 23 nodes during surgery. I too hope this feeling goes away. I have just begun round 2 of chemo with Taxotere. Then will have radiation. Then... then... then... If it helps any to read the journey of another TNBC sister: I have a blog (good, bad, ugly, funny...you have to read from the bottom up for it to make sense as new posts show up at the top...) please feel free to read: diaryofamadwhitecancerpatient.com I too am frightened about recurrence and wish there was a guarantee or more information out there on how to keep this crap from coming back. I am 44 years old and plan on a LONG FULL Life. I guess I next need to heal, finish chemo, finish, radiation and if there are any good diet counselors out there, please let me know what I can or should be eating. Try to remain positive as you go through this, I know it is hard, but negative energy causes far more stress for your body and your body needs to remain strong. God Bless You.  Edited by pppinaz - Jan 03 2009 at 6:40am |
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Breastless
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Posted: Jan 03 2009 at 12:48pm |
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Thanks Pam, Kirby, Donna, Laurie... all of you!. Please tell me what your friends call you,pppinaz or what you would like for me to call you since we are not strangers anymore! Edited by Breastless - Jan 03 2009 at 12:56pm |
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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 |
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base
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Posted: Jan 03 2009 at 1:38pm |
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Hi Breastless, I am over two years out. Sometime I get scared, and think I will get mets but I think about it less often that I used to. I try not to think about it as there is no real point in worrying about it but that is easier said than done.
I would be curious where she got that stat from. When I was asking about lump+rads vs mast, the recurrance rates were lower for both. Also, the stats frequently seem to be rather generalized so actually less relevent....
hug,
Saskia
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dx 6/06 @31
Stage IIIA, grade 3, ER-/PR-/HER2-, 5cm BRCA1and2 negative 6/06 4 dd A/C, 4 dd Taxol 10/06 lumpectomy, SNB 12/06 radiation |
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Breastless
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Posted: Jan 03 2009 at 2:51pm |
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Kirby, have you asked why your Oncologists doesn't believe in scanning? I am very curious as to why? I am wondering if there are any articles or documentation that may say that the scans can be harmful or increase or prompt cancer growth for TNBC. A friend of mine who's mother died from BC when she was very young, just cared for her sister last year who had TNBC and a bi-lateral mastectomy. She was told mammograms can increase the risk of TNBC so she won't have them. When I saw that your Oncologists doesn't believe in them and then a post yesterday from a woman who's doctor doesn't scan until 2 years from dx. I just wonder...and my Oncologist said she will scan me every 3 months for the first 2 years! After that I can go to every 6 months and then by the time I reach 5 years I can come once a year. It seems with scanning like this, I will be scared and worried most of the time. I too trust my Oncologist. How on earth do we know what is best? Thanks. Edited by Breastless - Jan 03 2009 at 2:52pm |
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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 |
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krisa
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Posted: Jan 03 2009 at 5:42pm |
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Karen,
my Onc doesn't like to do scans unless I have symptoms. It does expose a patient to more radiation (CT) so, we have to weight the risks and benefits of doing scans. You are in charge, so do what is comfortable for you. |
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Breastless
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Posted: Jan 03 2009 at 6:32pm |
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Pam,
I just re-read your post to me. Are you going to have any reconstruction done? I can't imagine feeling like this. I also know that once I am through with chemotherapy, that I still have a lot of recovering to do. I am no where close to feeling like I can have reconstruction, I just believe it is something that I will want to do. I can't even put a bra with forms around me right now without it hurting. I am also very puffy up underneath my arms. Do you have that? Are you working right now? I have taken off until my treatments are completed. I hate the thought of going back to work in a wig. I feel so different about everything. Emotionally and physically.
Breast Cancer changes you, it just does.
K
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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 |
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kirby
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Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
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Posted: Jan 03 2009 at 8:05pm |
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I still see my onc 2x a year. I see the surgeon 1x a year. He just changed that from 2x last year. I see the gyn once a year so I am being checked STILL on a quarterly basis. And an annual mammo.
My onc has stated the same as Krisa's. I hate to quote and get facts wrong but I believe for something to show up on scans, it cannot be detected until it is a fairly good size. Perhaps 1 cm. Not sure if that is limited to just a CT. He doesn't do blood work because of the false negatives/false positives. Doesn't find that it is a reliable tool unless it is known that there is active cancer. In addition, he feels the emotional toll it puts the patient thru, being reliant on #'s is not worth it. I have actually seen this on another group I am in, where a member has had blood work done and the #'s have changed and they are completely freaked until it is redone. Sometimes these #'s do vary, within a range. But if it is always fairly constant, then changes higher by a few...it is so easy to become so alarmed.....what may be needlessly.
For me, I had to just find a spiritual place, making peace with my life and not feeling like cancer owned me by worry. Fortunately time does make it easier.
I was age 45 when dx.
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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kirby
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Posted: Jan 03 2009 at 9:06pm |
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thanks Terri, glad I can be inspiration. I know when I went thru it, I didn't want to hear any more awful stories and about what I couldn't do. I wanted to have life as normal as possible. It was great to hear from those few people that seemed more positive. Fortunately, my onc was one of them.
A few years after tx I somehow got involved in an online group that Caryn Rose was in as well. It was set up by a BC survivor that wanted to write a book. I didn't care much about that but the posting with all these other women was quite cathartic. It was great group of women, that I still chat with. Very positive people. Anyway, the book was published last year....I Am Not My BreastCancer, by Ruth Peltason. It is a great book. Very different. Hard to describe. More on the actual emotional issues that confront us all. Look it up, you may find some inspiration there too. There were quite a few young women involved.
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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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 04 2009 at 5:30am |
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I`m actually reading that book right now! It was on Nancy`s reading list. I received it from my secret santa after posting it on my wishlist at work. It`s great so far. Was your id kirby there too? Right now I feel like I am suffocating in death b/c a friend of mine and my uncle just passed from c. I have a funeral today AND tomorrow. I can`t sleep well and when I do I`m dreaming of c. My husband feels I need a break from bc because it is getting me so down. It seems when I`m trying to move ahead from bc I get one step forward and 2 steps back. I hope 2009 is better for all of us!! 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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rena
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Posted: Jan 04 2009 at 6:19am |
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Hi Breastless and everyone. I was diagnosed when I was 37. That was in 1986! I had 22 positive lymph nodes and an ER/PR-negative tumor. In those days, there was no HER test. My oncologist has told me, though, that since I was young, had an apparently aggressive tumor, and (as I much later found out) BRCA2-positive, there's no doubt that I was a triple negative. At any rate, here I am, alive and well 22 years later. It's true what has already been said here: TNs respond very well to chemo, and time is our friend. For me, the first three years were the hardest--worrying about recurrence. With each day, month and year that you get farther away from diagnosis, the easier it will get. I was told that I had "a poor prognosis." So, when your doctor starts throwing around numbers like 40%, think about me and not about numbers. Wishing you well, Rena
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Terri
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Posted: Jan 04 2009 at 6:50am |
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Hi Rena,
Wow that`s great that you are doing well after 22 years. Thankyou for sharing and giving us all hope! |
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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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sibu
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Joined: Jun 27 2008 Location: FL Status: Offline Points: 660 |
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Posted: Jan 04 2009 at 3:30pm |
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Hello Rena!! I will assume you're the Rena from Komen... Glad to see you found your way here.
On the scanning--my onc. is of the same opinion. He does not recommend scans unless there are ongoing and progressively worse symptoms. Here is one article from Mayo Clinic linking radiation to causing cancer: http://www.mayoclinic.com/health/ct-scans/AN01777 The bottom line is that we really don't know the unseen effects of these powerful machines and the radiation they emit. As I understand it, the PET/CT scan measures quickly growing cells and not necessarily tumors above a certain size. My report gave measurements of the growth areas, as well as an "SUV score" which tells us how quickly the cells are growing (and therefore how likely it is c). I'm all for staying positive and not worrying, but I would/will make different choices for my life if I know I am stage iv. I have young children who would benefit from transition and the resources we have would need to be distributed differently. I don't know why we are all so afraid to talk about or experience the process of death if that's the reality. Reminds me of ladies in our parents' generation who didn't talk about breast cancer. It didn't make it go away. Seems a healthy thing to do. I apologize in advance if that strikes a few nerves. Love to all, Donna |
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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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Laurie, It's amazing at how much gets over-looked isn't it? I hear this time and again. And, two years ago I went to see a surgeon for a lump I felt. It was biopsied in my Dr.'s office and came back A-typical, so he did nothing. Not a thing. Last April I had a mammogram and it showed nothing. Then in September I felt another lump in my left breast. So just 5 months later there was a 2.8cm cancerous tumor in my breast. I didn't know it was TNBC until after surgery. They did a biopsy in the left breast and an MRI after that showed 2 more areas in both breast they wanted to biopsy. I said no, just remove both and it was a good thing because there was cancer in both. I joined a gym today to try to loosen up this feeling in my chest and arms. Do you still have drainage tubes? My Oncologist said that the chemotherapy may be causing the neuropathy. Pain medicine does not help the feeling in my chest and that is how she said you can tell it's nerve damage. When do you begin treatments? I think low fat and high protien is the way to eat. Everything I read points to that. There is a great site.. |
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