Recurrence Anxiety |
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Alyson 
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Joined: Mar 26 2009 Location: Tennessee Status: Offline Points: 20 |
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 Topic: Recurrence AnxietyPosted: Mar 26 2009 at 8:04am |
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I am 43 and was diagnosed with Stage 1 Triple Negative BC in Jan. 08. My tumor was .9cm, grade 3 and neg. nodes. I had bilateral masc. 4 rounds of AC and 4 rounds of taxol. I feel great, but anxiety of being Triple Negative is getting the best of me. My oncologist is optimistic, but I can't stop worrying. Is this normal one year out? I would love to hear from anyone who can relate. God Bless all of you out there!!!
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HairSprayMom
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Joined: Mar 20 2009 Location: Alabama Status: Offline Points: 137 |
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Posted: Mar 26 2009 at 8:46am |
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Alyson,
Hi! I can totally relate to you. I finished Chemo in March of 08 and I am still freaking out. On top of triple negative I was DX Metaplastic Carcinoma, what a bummer. I went to see my ONC last Friday because of Meno Symptoms and he put me on Effexor, refilled my Xanax and I am trying to just feel normal. Some days I am OK and others I am a teeth grinding, head pounding MESS!! From what I have read this is pretty normal. I found this forum, just like you did trying to find a place to vent and really be understood. Cause only other BC--- can really understand. My husband and family have been great, but every time the cancer thing freaks me out they just blow it off and think I should be the old normal Mom again. Well you know what I may never be that person again, cancer changes you and your whole outlook. I try to stay positive, but it is nice to be able to get the feelings we have out! It is hard to talk to others who say they understand, but really don't. You hang in there and so will I. Not sure if the Effexor is working, but the Xanax has never let me down. HAHA If I can help...you just let me know. Sending Love and Good Vibes!! Regina |
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39 yr old. DX Metaplastic Carcenoma/Triple Negative IIIb 9-26-07, bilat mod rad MX 10-1-07, 2.7cm in Chest Wall. Dense dose Chemo 11/07-03/08 AC/Tax. NED 4-09 YEA! Deconstructed 12-13-10 & Happy!
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Alyson
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Posted: Mar 26 2009 at 10:18am |
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Regina!!!
Where have you been? You are my cancer sister and fellow fan of Xanax!! Just like you -some good and some bad days. The triple negative dx really through me for a loop-of course I would not have the "normal cancer." Everyone thinks the cancer thing is over and I should be the same mom, wife, friend, daughter, but it just does not work that way!!! I am also on Cymbalta, but I don't know if there is a med to take this doom and gloom away. My onc. thinks I am way over anxious about recurrence, but is understanding in that she still refills Xanax as my panic attacks are off the charts. I worry stress may have contributed to my cancer as I was in graduate school and under heavy stress when dx. Also-horrible meno symptoms-I am in a hot flash as I type!!! I started my reconstruction in 09/08 with expanders and will get my nipples in late April. At least I have some pretty breasts, albeit scarred!
Thanks for the uplifting words - you made my day.
Alyson
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Eileen
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Posted: Mar 26 2009 at 11:41am |
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I too can relate. Was diagnosed stage 1 in 2/08....the triple negative, my family and friends have no idea of what is hanging over our heads. It is so nice to have this place to vent and be understood by fellow breast cancer sisters. Thanks to all for your support. 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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Alyson
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Posted: Mar 26 2009 at 11:59am |
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This makes me feel so much better knowing I am not the only person out there in a complete state of panic. I have checkups/bloodwork every 3 months and I go crazy a few days (weeks!) before-especially when they do the tumor markers.
Take care of you!!
Alyson
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HairSprayMom
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Posted: Mar 26 2009 at 12:09pm |
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Glad my venting helped. And I am sure if we took a poll many many of us BC Survivors feel the same way. I just try and act normal(or what I think normal is) and carry on around my family. I am a freaked out mess over the Pet Scan I have next week, but it will be good to know for sure for now that all is good. Just keep your head up and tell your family to BACK OFF when you need 2.
Sending Love! Regina |
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39 yr old. DX Metaplastic Carcenoma/Triple Negative IIIb 9-26-07, bilat mod rad MX 10-1-07, 2.7cm in Chest Wall. Dense dose Chemo 11/07-03/08 AC/Tax. NED 4-09 YEA! Deconstructed 12-13-10 & Happy!
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Nancy
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Posted: Mar 26 2009 at 12:15pm |
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Alyson and Eileen,
First Alyson...welcome to the site
 I have wondered for some time now if I am the oddball mom of a daughter with TNBC. I read your many many posts, and still cannot relate to family members/friends, who do not understand this dx or cancer in general.
I know that I have been on this site since July of 2007, and read every post made, and at times I know that I "read between the lines". Still, even if I was not on this site, I would have made myself aware of the details of TNBC.
When our grandson was dx with leukemia, this was in 1991, and there was no Google...or at least not that I was aware, I still asked many many questions...why, how, when ...I just had to know what the outcome would be. I have never felt that he was free of cancer. No one ever is.
I am the worrier, and for you women who have been dx to be told that the "cancer thing is over", is utterly ludicrous. How do all of you "turn off the worry machine"? You do not. Lori tries to enjoy every day and not allow "it" to take over her life, but I still see the "look" in her eyes when she speaks of the past almost 2 years.
Alyson, I would bet the farm that the stress you were under contributed to your dx. "They' say that has not been proven. I am so sick of hearing that, that it makes me want to hurl! I posted many times in my thread for Lori of the stress she was under for at least 2 years before dx. Coincidence? Oh please!
Alyson, has your onc been dx with cancer? Until she has she cannot begin to understand your fears as to recurrence. Good that she fills the scripts.
Well...down from the soap box...
Many hugs,
Nancy
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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 |
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cduvall1
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Posted: Mar 26 2009 at 12:20pm |
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Hello to Alyson, Eileen, and Regina,
You all are much younger than me, so I can only imagine the added fears and anxiety you are dealing with. It is so true that cancer changes you. Even on the best of days the cancer is like a shadow that follows you everywhere. As Eileen says, it hangs over our heads. How wonderful that you found this site; it is such a wonderful source for information and for comfort, not to mention a place to vent. Alyson, you mentioned having a feeling that stress may have contributed to the cancer...me too. I was under so much stress from my teaching job just prior to and during the early month of diagnosis. In a way I consider myself lucky to have been able to retire last May. I'm in awe of the gals who go through treatments and continue to work.
I do hope you all will continue adding to the TNBC site for it is such a source of power and healing for us all.
Carol
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Carol
dx 3/08 age 63, invasive metaplastic carcinoma, 2cm, node neg, grade 3, stage I, lumpectomy 5/08,AC 4x, Taxol 12x weekly, radiation 5wk, NED 4/29/09 |
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trip2
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Posted: Mar 26 2009 at 12:38pm |
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Hi Alyson,
You are so very normal.
 It takes awhile before the fear lessons. As we get on with our lives and get busy that helps alot.
Also if we are dealing with any side effects it can be a reminder.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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buckeye
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Posted: Mar 26 2009 at 12:45pm |
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Alyson - I am a 3 year survivor who had an awful time with chemo and blood clots and more things then I coud list and everyone at work and at home say these things like - wow you should be grateful for each day, like I don't know it? NO ONE who has not had cancer knows these feelings that we have to live with, the night terrors when everyone else is asleep. The fight we don't want to lose- I feel nervous about every test, every visit. Trust me I know
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dx 11/05 IIC GRADE 3
4 CM mastectomy 11/05 additonal surgery 11/05 no node involvement 4 rounds ACT |
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Alyson
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Posted: Mar 26 2009 at 4:57pm |
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Hello Regina!
Good luck on your scan. I had a CT scan in Dec 08 and all was well. It was the first one I had since dx, so of course I was terrified. My onc. nurse called me about 20 minutes after scan and told me the scan was clear-she knew I would go crazy waiting for onc. appointment next day. Ask your onc. if they can let you know ASAP after scan-it will help!!
My prayers are with you!
Alyson
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jadesloge
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Joined: Jun 02 2008 Location: OR Status: Offline Points: 66 |
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Posted: Mar 26 2009 at 6:58pm |
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Alyson,
I totally know where you are coming from. I finished tx in Aug 08. My brain acts like a roller coaster. Some days I can get rid of the dread and thinking about it, and some days I can't. I think that is par for the course. My oncologist is very understanding and answers every question as well as repeating, with great compassion, nearly every time I see her, that she is on top of it. Today, I saw her and she even offered to see me once a month instead of every three. I don't think I need that, but it is nice to know I have the option.
We all have anxiety about this, I am just glad to read on here that I am no different than anyone else. The non-cancer people around me, don't get it and I try not to even talk too much about it now even though it is almost a constant thought. I fear I will drive away the people I need the most if I keep talking about it.
Julie
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Terri
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Posted: Mar 26 2009 at 7:14pm |
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Alyson and ladies,
I finished my treatment almost a year ago this coming end of April. I feel the exact same way about fearing recurrence and especially mets. I have aches in my ribs & shins sometimes and I`m scared of what is going on in my body. My onc doesn`t believe in routine CT/PET scans so I haven`t had one yet. I think this year I will have them because in August it will be 2 years from diagnosis.
I am the strong one in my family and circle of friends. Everyone comes to me to vent about their problems!! They know I have fears but really have NO IDEA that I think about it everyday. No one knows how we feel unless they have been through it. "The non-cancer people around me, don't get it and I try not to even talk too much about it now even though it is almost a constant thought. I fear I will drive away the people I need the most if I keep talking about it."Julie, you summed it up exactly.
Life now is a balancing act of living the new normal, trying to be grateful for everyday and fear that I have no future and being angry and sad for all this disease has taken away from me. Wow, I sound like a psycho but it feels good to vent!
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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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HairSprayMom
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Posted: Mar 27 2009 at 5:56am |
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Everyone,
1st off Terri you are def not a psycho or we all are. And you are so right Julie. If I say anything about cancer around my family and friends they look at me like I am crazy and tell me I just like to focus on negative things. That I should move on and concentrate on what is important...boy that one really peeves me off. So I also try just not to talk about it around others! But cancer is a part of me and I can't just forget it and move on...it shadows me everywhere. Just found out my cousin in NY Karin was diagnosed this week w/ the big BC. They caught it early 1/2 cm tumor and she will do 6 weeks RADS, will have more info today., so it is really hard to put it out of my mind. I also am the rock in the family and I am trying to still be the one everyone turns to, but who the heck do I have to turn to...YOU GUYS! But it would be nice to just be able to babble about it for a while, maybe cry, or scream, and then get a big hug from family even if they don't quite get it. I am just glad I found this site so I can vent a little, for a while I thought I was just gonna blow, but I feel a little better now being able to just get it out. Just one more question, do your hubbys/families know about the AntiDeps and Xanax/Ativan? Mine was giving me a hard time about meds (said I was relying on them too much, like a junkie), so I just stopped putting them on the counter, I keep all of my meds in my purse, but it makes me feel like I am doing something wrong, like I am a teenager sneaking around....just more anxiety. Just wondered if I was the only junkie HAHA.... by family standards? So I guess I am done rambling on and on....  Love and Hugs! Regina |
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39 yr old. DX Metaplastic Carcenoma/Triple Negative IIIb 9-26-07, bilat mod rad MX 10-1-07, 2.7cm in Chest Wall. Dense dose Chemo 11/07-03/08 AC/Tax. NED 4-09 YEA! Deconstructed 12-13-10 & Happy!
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trip2
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Posted: Mar 27 2009 at 8:27am |
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Regina you are not a junkie by any means. Perhaps because our families cannot understand what is in our heads they cannot understand how much this can help to get thru some of these difficult times.
You are not relying on your meds too much or the doc wouldn't give them to you.
Our families love us but they are clueless to know the fear we have of cancer coming back. I doubt they would be comfortable with dealing with that either.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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HairSprayMom
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Posted: Mar 27 2009 at 8:37am |
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Thanks Pam,
You are a very clear voice of reason, and I need that! Regina |
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39 yr old. DX Metaplastic Carcenoma/Triple Negative IIIb 9-26-07, bilat mod rad MX 10-1-07, 2.7cm in Chest Wall. Dense dose Chemo 11/07-03/08 AC/Tax. NED 4-09 YEA! Deconstructed 12-13-10 & Happy!
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JuJu2
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Posted: Mar 27 2009 at 8:55am |
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Hi, I'm a newbie as well. I am 39 and was diagnosed with Stage 1, Triple negative BC in Dec. 2006. My tumer was .8 cm and neg. nodes as well. I had 4 rounds of TAC and then a bilateral mast. My mother is an 8 year survivor but her sister passed away at 41 from it. I also went ahead and had a complete hyst. Some might think I went overboard but it's my life and I have a 4 yr. old who needs me (as well as a 37 yr. old hubby). I have been doing fabulous and I am a very positive thinking person about life in general. But I admit there are days that worry overtakes me but I refuse to apologize to ANYONE for it. I am lucky in that I am a member of a young survivor group here locally and I love everyone of them!! My onc is optomistic about me as well but certainly listens to my concerns. She is a wonderful doc and I know there is really honestly nothing she can promise me. I am the only Triple Neg in our group of 10 survivors. I sometimes feel like the odd man out. I just think you have to take day by day and when the worry comes on just get busy doing something. I accidentally found this forum and am so glad of it.
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Mar 27 2009 at 9:38am |
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Hi there JuJu,
We welcome you to the site JuJu.
I do not think that you went overboard, as it sounds as though there is a family history as to breast cancer. I will ask as to why your onc has not told you to have the BRCA gene testing.
This is an hereditary gene mutation, and since your aunt died from bc and your mom is an eight year bc survivor, there is a distinct possibility that you carry this gene mutation. If you test positive for this mutation there is a 50% chance that your daughter will develop bc as well, and if you have any siblings, they as well. 85% of BRCA1+ are TN. I get confused as to the BRCA2+ percentages, so maybe someone else will chime in and clarify that.
You might want to visit the FORCE site. http://www.facingourrisk.org
Also here a a few links for the testing.
I am almost certain that your insurance would pay for this considering the family history.
Good for you in expressing your true feelings. There is never a need to apologize to any one at any time as to how you feel You have definitely earned this right sweetie. Also....congtrats on the almost 3 year mark
Many hugs,
Nancy
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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 |
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trip2
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Posted: Mar 27 2009 at 2:08pm |
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Hello Juju and welcome.
You do sound fabulous. It's so good to hear you have gotten past
it all for the most part.
We're so glad you found us and we look forward to hearing more
from you. I agree, when the worry is upfront getting
busy with something else is very helpful.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Alyson
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Posted: Mar 29 2009 at 8:23am |
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Hello again Regina
I also have been accused of being a junkie-so What!!! I jokingly say I am a day away from using crack or meth. Seriously, Xanax does help me with the panic attacks and menopause symptoms. I really need some help with the tension headaches or is it a brain tumor!!?? The daily tension of bc keeps my jaw in a crooked clench all day!! Keep the meds in your purse and don't add to your anxiety. My anxiety just builds on top of itself. Enjoy your day and relax!!
Big hugs!
Alyson
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