Recurrence Anxiety
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URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=3258
Printed Date: Mar 26 2026 at 8:24pm
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Topic: Recurrence Anxiety
Posted By: Alyson
Subject: Recurrence Anxiety
Date Posted: Mar 26 2009 at 8:04am
| 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!!! |
Replies:
Posted By: HairSprayMom
Date 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 ------------- 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! |
Posted By: Alyson
Date 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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Posted By: Eileen
Date 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 ------------- 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 |
Posted By: Alyson
Date 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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Posted By: HairSprayMom
Date 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 ------------- 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! |
Posted By: Nancy
Date 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
------------- 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 |
Posted By: cduvall1
Date 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 ------------- 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 |
Posted By: trip2
Date 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. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: buckeye
Date 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
------------- dx 11/05 IIC GRADE 3 4 CM mastectomy 11/05 additonal surgery 11/05 no node involvement 4 rounds ACT |
Posted By: Alyson
Date 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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Posted By: jadesloge
Date 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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Posted By: Terri
Date 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!
 ------------- 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 |
Posted By: HairSprayMom
Date 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 ------------- 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! |
Posted By: trip2
Date 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. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: HairSprayMom
Date 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 ------------- 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! |
Posted By: JuJu2
Date Posted: Mar 27 2009 at 8:55am
| 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. |
Posted By: Nancy
Date 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 - http://www.facingourrisk.org
Also here a a few links for the testing.
http://www.myriad.com/ - http://www.myriad.com/
http://www.myriad.com/products/bracanalysis.php - http://www.myriad.com/products/bracanalysis.php
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 ------------- 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 |
Posted By: trip2
Date 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. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Alyson
Date 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
|
Posted By: TamJ
Date Posted: Mar 29 2009 at 9:48am
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Recurrence Anxiety I'm a 6 year survivor and theres not a day that goes by I don't think of cancer its all around us for a reminder,but theres a reason we are all here still to talk about it.For the person that has just been diagnosed,they need our support.I have had sleep problems for 6 years and I'm on an antidepresant 6 yrs.I have good days and bad days physicaly and emotionaly.But I keep trudgeing on,and thank my god alot! Take care,Tammy
 I don't have spell check yet,forgive my miss spellings. ------------- TNBC DX 1-24-03 IDC 1.8cm stage 2 gr 3 L Mastectomy 2-27-03 Chemo AC & Taxotere,Radiation, R Mastectomy Preventative 04 Reconstruction L&R |
Posted By: Shelley
Date Posted: Mar 29 2009 at 2:46pm
| Hi Ladies, I know exactly where you are coming from. I have been done with treatments for 6 months. I can't seem to quit fretting about when it is going to start again. When will they find what is lurking in there. It helps me so much to vent on this site and see that others are feeling the same. I too have a hard time with family, friends, and coworkers. They say "Oh you are doing so well!" They have no ideas of the stress and emotions that we go through. I read on this site to take one day at a time and then soon it will be two days at a time and then three.... Keep talking and sharing and making it through those days! |
Posted By: Alyson
Date Posted: Mar 29 2009 at 5:05pm
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Hi Tammy!!
Congrats on 6 years cancer free and wishing you a lifetime of survival!! I guess the anxiety never leaves us. I was anxious about breast cancer for about 20 years before being diagnosed even though I have no family history. I guess it was just an instinct. My anxiety has just gone from when am I going to get breast cancer to is it going to come back - I am exhausted!!! We are all blessed in many ways and it is so good to have others in our shoes to discuss our issues with.
Thanks for sharing.
Alyson
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Posted By: TamJ
Date Posted: Mar 29 2009 at 7:14pm
Thank you for the congrats,and same to you! ------------- TNBC DX 1-24-03 IDC 1.8cm stage 2 gr 3 L Mastectomy 2-27-03 Chemo AC & Taxotere,Radiation, R Mastectomy Preventative 04 Reconstruction L&R |
Posted By: MicheleS
Date Posted: Mar 30 2009 at 4:31am
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I'm the same way... I'm paranoid. I'm still in the midst of chemo so a lot of it is depression related... I'm having a hard time seeing the light at the end of the tunnel.
It is nice to see so many survivors posting!!
Michele
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Posted By: cduvall1
Date Posted: Mar 30 2009 at 4:47am
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Michele,
Your paranoia may just deminish after chemo is over. There are so many things both physical and emotional that go hand-in-hand with chemo. When I look back on it I am amazed at how much better I feel now. Again, as has been said many times, we all react differently.
You are so right about survivors posting. Yesterday I had lunch with a sister-in-law who is a 7 year survivor whose last recurrence was 5 years ago! She has such a wonderful attitude; I think some of her positiveness spread off on me 'cuz I'm feeling optimistic today.
We need to read what other survivors have to say. We need to know they are out there.
Carol ------------- 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 |
Posted By: HairSprayMom
Date Posted: Mar 30 2009 at 5:00am
|
Hey Alyson and everyone, Its good to know I am not the only Junkie HAHA out here. I also have really bad stress headaches...bordering on Migrains as they build up all week. I take a 4mg Zanaflex (muscle relaxer) and they usually clear up the headaches without much side effects. Sometimes they make me a little drowsy, but they work. Sending love! Regina ------------- 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! |
Posted By: jody
Date Posted: Mar 30 2009 at 6:44am
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Hi Girls,
Boy can I relate to the conversation going on here. I completely finished my treatments on 12/31/08...and know I feel like I am just waiting to hear about a reoccurance. Every time I have even a little twinge of pain in my head I am certain it's a tumor. Never mind that I have had sinus pressure and pain for years, tension headaches etc...no, NOW in my mind it's a reoccurance. I am only 3 months out from treatments so I am hoping as time passesI will not be so nurotic about it!
My family although supportive, feel that this is something we can put in the past. I doubt I will EVER be able to put it in the past. They don't seem to understand that I will be living with the "C" word for the rest of my life.
XANAX is my friend!!!!!
Thanks for listening, Jody
------------- diagnosed 4/16/08 stage 1, node neg TN grade 3,lumpectomy 4/30/08 chemo a/c 6 rnds, finished 9/08. Radiation begins 11/6/08 La Verne, California |
Posted By: Alyson
Date Posted: Mar 30 2009 at 7:38am
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Hi Jody!
I really don't think our cancer will ever be in our past. My family is the same way-so glad the cancer incident is over. They do not understand our fear. I know I feel my assurance of a future has been stripped from me. No one is guaranteed a tomorrow, but everyone takes it for granted...until you have cancer. I have young children and when I hear other moms talk about when their child gets married, goes to college, etc. I am so sad inside because I don't take it for granted that I will be here to see such things and to those moms it is just frivilous chit chat. But on a happy note... we do cherish everyday. Where is my Xanax!!??
I have been done with treatment almost a year, but I still panic but it is getting a little better and life is somewhat normal (but what is normal??). When I was going through treatment I felt very secure and "watched." I had a hard time when treatment ended-I felt I was teetering on the edge all alone. You will feel better and do things that make you happy-that seems to help me.
Hugs!
Alyson ------------- Dx01/30/08 Age 42 Stage1,grade 3 .9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
Posted By: Dotti
Date Posted: Mar 30 2009 at 4:05pm
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Hello Girls, I think recurrence is something we all fear. Dx in Jan 07' just had my 2 yr chk up they saw something on my kidney and all the emotions come right back. The thought of doing chemo is over whelming. Thank God it was not cancer. Every pain makes you thnk could it be. Days that I feel great I do not thnk about it at all. Effexor has worked great for anxiety & hot flashes.
------------- age 41 dx 1/07 stage 3 in chest wall & lymp nodes chemo 6 mts red devil,taxol, rad 6 wks |
Posted By: buckeye
Date Posted: Mar 31 2009 at 10:08am
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HAIRSPRAYMOM- My doctor just put me on Effexor and ativan but it was kind of funny because at the pharmacy the pharmacist asked about the difference between the generic form of effexor not working as well as the name brand effexor - I explained that I wouldn't know the difference since I was just getting the perscription filled for the first time. Do you get the real effexor or the generic, I would have never questioned this if he hadn't said anything. Hey thanks for another worry in my world. And is xanax the same as ativan. The funny thing is I have never been one for pills but if I don't take an ativan before testing - mri's etc I can not breath and I have a panic attack which is strange because I have never been like that- so many changes ------------- dx 11/05 IIC GRADE 3 4 CM mastectomy 11/05 additonal surgery 11/05 no node involvement 4 rounds ACT |
Posted By: HairSprayMom
Date Posted: Mar 31 2009 at 11:51am
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Hi Buckeye, I asked about the generic Effexor as well. I was told that the generic available is not time released like the real Effexor. That is the main difference and why I was not prescribed it. Unfortunately the real Effexor is 60$ v/s 15$ a month for me. And yes Ativan and Xanax are about the same. I have taken both, but Xanax seem to work better for me than the Ativan did. I never took any pills before cancer either. I refused everything but pain meds and Xanax during treatment, what a dummy I was. I think it would have helped me a lot to give in during treatment, but I must say I have no quams about taking them now. The Effexor is working for me, I only had 2 hot flashes while I was sleeping last night, down from about 7-10 per night! YEA! and I still take the Xanax in the evening if I am gritting my teeth all day...like today. I have my 1st 18 month Pet Scan tomorrow and I am jittery to say the least. Just praying I don't light up like a Christmas Tree when they run me through. Well hope this helps!! Sending Love and Cool Breezes, Regina AKA HairSprayMom ------------- 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! |
Posted By: Alyson
Date Posted: Mar 31 2009 at 12:26pm
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Regina-
Please let us know how the scan goes-we all know your anxiety!!! Our prayers and thoughts are with you.
Alyson ( a former Hairspray Mom-before chemo!!!) ------------- Dx01/30/08 Age 42 Stage1,grade 3 .9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
Posted By: trip2
Date Posted: Mar 31 2009 at 2:12pm
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Regina,
I am so happy to hear the pills are helping with the night sweats!
Best of luck coming your way for that scan tomorrow.  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: kmartin
Date Posted: Mar 31 2009 at 5:32pm
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I was diagnosed last Feb. 08...and I am finding it difficult and stressful to be hitting all the one year anniversaries. Maybe that is compounding your stress??
This Friday will be one year from my first round of chemo...and so many memories are filling my mind. How do you celebrate these anniversaries?
Sometimes I want to cry for the difficult, painful, horrible experiences we all had during treatment...but mostly, I am thankful for having wonderful doctors...now I have about 6! and good treatments for our disease...and loving family and friends.
I say focus on the good things each day! Life is short, too short to spend all your time worrying.
And yes, I too am an Ativan user...in the evenings and at bedtime. Gotta sleep
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 - |
Posted By: buckeye
Date Posted: Apr 01 2009 at 2:26am
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Regina - good luck today we all know how these tests add so much stress yet can be so much of a relief afterwards if all is well. Thanks for the information on the pills. Who knew you can go right to menopause after chemo. I think I was tuned out during that conversation :) take care
today we will be praying for you ------------- dx 11/05 IIC GRADE 3 4 CM mastectomy 11/05 additonal surgery 11/05 no node involvement 4 rounds ACT |
Posted By: HairSprayMom
Date Posted: Apr 01 2009 at 3:54am
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Morning Girls,
I skipped out on work today, just too much going on in my head to concentrate. My Mom is going with me for my scan. My Scan app time is 8:50 and then I go back at 2:00 to see the doc. She is gonna drive so I can take a Xanax, just on the verge of panic and I don't think my teeth can take much more of this grinding. I'm sure thing will be fine, but either way I AIN'T GOIN DOWN WITHOUT A FIGHT! Sorry, had to throw a little southern feeling into it! HAHA I'll post as soon as I get back to a comp after all my appointments. THANKS for letting me vent and all of the good thoughts and prayers.
Regina ------------- 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! |
Posted By: MicheleS
Date Posted: Apr 01 2009 at 4:29am
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prayers, Regina. I'll be thinking of you today. Pls post an update when you can.
Michele
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Posted By: outnumbered
Date Posted: Apr 01 2009 at 4:34am
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Regina, I hope it goes well. Keeping my fingers crossed!!!!
I have been lurking waiting to post on this topic. My anxiety is based on the fact that I feel I have not had enough treatment. I do not want to go off on anither tangent about getting another opinion. That is NOT an option. I have exhaused that avenue and there is no one else to see. I have been to the top. Where I am now is that I have to accept this and keep moving forward. I KNOW in my gut this is not over, but unfortunately I have to wait it out. The good news was that I caught it early, the bad news was I caught it early.
I have to vent this out...If one more person tells me to be positive, I am going to go postal. Maybe stress causes this, but who does not have stress in their lives? And not everyone gets this crappy disease. So if I am not positive enough, and I have a recurrance, are they saying its MY fault?!
 Is it my fault that I inherited this gene? Is it my fault that I do not live a stress free exhistance lounging in a spa all day every day? I know its all in how you look at things, but you know what, I do the best I can with what G-d has given me and I will not accept blame for this!!! It JUST HAPPENED!!!! And now I feel like my innocence is gone. I will never be the same. I can talk here and I can talk with a good friend who has this (she also has tamoxifen, lucky her) and thats it. Family tries but just wants to move on. My friend and I are looking into finding a support group for living wth or living beyond cancer. Thanks for letting me blow off steam! ------------- ~Sara DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
Posted By: Alyson
Date Posted: Apr 01 2009 at 7:02am
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Hello Outnumbered!
I feel your stress. Trying to stay positive is almost impossible-I notice only people without cancer tell me about the power of positive thinking. I have always been a stressed out person-even on good days. I worry all my stress caused my cells to go haywire. I feel my only defense now is to eat low fat healthy food (although last nite I tore through a box of Cocoa Puffs, but low fat!) and try to get some exercise- I know...blah, blah , blah!! Hot baths and a ton of sleep sometimes help and pharmaceuticals!
My innocence and a guarantee of a long future have been taken away by breast cancer and I mourn the loss of it (I am now 43). Our families just don't get it and I feel it pulls me away from them- I have lost my emotional connection with my family. However my husband and kids (5 and 10) "get me" and really lift my spirits.
I know several women who were diagnosed with breast cancer 20-30 years ago and they are surviving, but they are still fearful and talk of their cancer days as if it was yesterday. It will never leave us.
Keep venting-it helps!!
Alyson ------------- Dx01/30/08 Age 42 Stage1,grade 3 .9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
Posted By: kirby
Date Posted: Apr 01 2009 at 7:18am
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Sara,
I so relate to your stress/my fault line. I loved Lance Armstrongs book, which I read when I went thru tx. He stated he saw the nicest most postive people die and the grumpiest live. It could not be about attitude ! I have/ have had lots of stress in my life but do what I can to diminish it. It is just a fact I cannot change. If stress causes cancer then a whole lot more would have it. I am pretty low key, regardless of stress. When I did BRCA testing they had me meet several times with geneticist. They were fabulous, telling how they hope to eventually find, but for whatever reason some of our bodies mechanism that dispels the cancer, doesn't work for some of us. Fortunately I am enough years out people no longer say those things that basically blame on for their cancer. Some of my standard answers are, if cancer is caused by stress, do you think that is why these young children get cancer too? Or is that only applicable to breast cancer and how do you think it knows to start in a breast when there are so many other types of cancer. Usually what stops them in there tracks about that positive attitude stuff, granted a positive attitude can make life easier for ourselves and those around us, is when I tell them if a positive attitude is all it took, my mother would not be dead ! Hit them with the logic of those asinine statements ! ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: trip2
Date Posted: Apr 01 2009 at 7:25am
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Sara absolutely nothing you have done has caused your cancer. It is not your fault! For us to carry guilt for getting this disease is ludicrous. Don't let anyone convince you otherwise. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: HairSprayMom
Date Posted: Apr 01 2009 at 8:34am
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Hey Ladies, Well I am an idiot I guess. My scan is done and me and my mom went to a little girly place called Emmas Tea House and had lunch and tea afterwards. Really calmed my mind and spirit to get to spend some quality time with her. I thought my DR appointment was today, but dand it it is NEXT WEEK! I asked the tech when the results would be available and she told me 24-48 HRS. I will be calling the social worker tomorrow to run down my Doc and get me some answers! I just don't know if I can handel another week waiting...and waiting. Just wanted to post a quick update. And everyone just vent away!! I fully believe the worry never goes away, and no one that has not had cancer and treatment could even begin to understand or relate. My family also has the mentality that treatment is over, so is cancer. I just wish it was that easy! Waiting and anxiety eat at me all of the time. Some days I am just fine and it is totally out of my mind, and others I just freak out. I look at my kids and wonder will I see my grandchildren from my oldest kids Frankie (17) and Andrew (15) ? Will I even see my littlest Nikole (3) graduate, or even make it to high school? We all try and stay positive, but sometimes it is just really hard when faced with our reality. I remember when I was going through treatment and everyone would always ask "How are you feeling" and I am sure all of us used the standard. OK, when we just wanted to say I feel like crap, cannot eat, cannot sleep, my bones and teeth ache. They would have freaked out if we had answered that way I imagine...sometimes the truth is not pretty, so we gloss it over for those around us. I also feel disconnected from my family at times, like I just share a house with these people, not a life....Well I don't wanna drag anybody down into my bad day, so I'll go for now, I'll post againg when I get my scan results! Hopefully tomorrow.
Sending Love!
Regina
AKA HairSprayMom ------------- 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! |
Posted By: Alyson
Date Posted: Apr 01 2009 at 8:42am
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Regina-
Keep pressing on to get those results ASAP. I have been blessed with docs/nurses that get results to me quick-good or bad news. The waiting is horrible. Good thing you have a social worker to help. As I always say... I am a mean mama with cancer, don't mess with me!!!
Good luck.
Alyson ------------- Dx01/30/08 Age 42 Stage1,grade 3 .9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
Posted By: trip2
Date Posted: Apr 01 2009 at 9:28am
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Regina, Next time you get a scan be sure and ask them to mail you a copy of the results. You need this for your personal file anyway and may sometime learn before you can see the doc.
I too worry about it coming back. I've had it twice and figure it is a matter of time. But I don't let it affect my everyday life.
People who have not been diagnosed cannot understand this with good reason. Thank heavens we have places like this to come to. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Nancy
Date Posted: Apr 01 2009 at 9:43am
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Regina,
When Lori had "the scare" a while back, her CAT scan was read by her rad onc as soon as it was done. He told her to go to his office in the hospital and he gave her the results. The MRI then 2 days later was done and read within a few hours also. The radiologist at the MRI place read it, and sent it immediately to her rad onc and he called her as soon as he read it.
Don't allow then to give you the run-around. If it was their family member it would be read stat. The "waiting game" is torture to anyone and causes so much stress, which no one needs or deserves.
Many 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 |
Posted By: trip2
Date Posted: Apr 01 2009 at 10:02am
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Nancy Lori is lucky in the respect she has such good response. This just isn't the case in so many places. Sure wish it was.
When they saw the 3 spots on my liver they were quick to tell me. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: mabel
Date Posted: Apr 01 2009 at 10:27am
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Happy to hear you feel great. I am going through traetment , same as yours except i have brca1 so i will have a hysterrectomy also. God does not want us to live our life in worry, nor does he want us to allow fear to rule our thoughts. I hope that when this is done I won't be fearful, because cancer has already taken up enough of my time. God bless you. |
Posted By: vickyann
Date Posted: Apr 01 2009 at 5:20pm
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Alyson,
We do understand and feel your fear. I can go from scared mad and hopefully all in 30 minutes.
The emotion can overwhelm you into a feeling of not moving forward or backwards. I do not want to die. i do not want my husband to marry someone better than me if I die. I want to see my daugther graduate from college. Your family has helped you so much through the treatment phase that they are tired and they do not want to think something else or worse could happen. So of course they do not want to talk about anything.
In fact in my case they seem to wonder why we think about it so much.
So what do we do....
The part of triple negative that still makes me crazy is the no after care plan. The if it comes back plan. Where is our Harry Connick jr. movie Where is our herceptin. In other words where is our HOPE.. Thus produces anxiety, fear, worry.
I believe with all my heart we can't give up. We have to be proactive. Give yourself time each day to feel your fear. Then put it away. Find a way to put pressure on the researchers to remember us. Your mind is a computer it will process the information you give it. Tell yourself The cancer is never coming back....
vickyann
Stage 2 grade3
no nod
dx12/07
no reconstruction yet
tac x 6
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Posted By: cduvall1
Date Posted: Apr 02 2009 at 4:13am
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The great thing about having this forum is for us to communicate, especially when we feel our family and friends are not available to fill this need we all have for discussing our situation. Pour your fear out here! We can take it!
Vickyann, I too feel the stress of not having an after care plan. I'm trying to create one of my own that includes control over eating, exercise, and feeding my spiritual needs. I have read the Anti-Cancer book listed in our resources section. It has given me some good ideas to include in my plan. There are no guarantees I will not have a recurrence, but for now I have a plan which makes me feel a little more powerfu.
I send my best to all of our TNBCers on this fine morning. Love and hugs.
Carol ------------- 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 |
Posted By: Terri
Date Posted: Apr 02 2009 at 6:48am
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Kirby, I also read Lance`s book during tx. I had forgotten he said that but it is so true! My friend who passed away from BC in December was the most amazingly positive woman. If it was about attitude she would have healed herself AND ME! I`m going to try to incorporate some of your answers when people say those patronizing statements to me.
Vickyann I can relate to the worry about your husband marrying someone BETTER if you die. We were newlyweds when I was diagnosed and I feel he got the ole bait and switch. Marrying a long haired, fit wife and getting the bald, chubby cancer patient who`s always worried about recurrence instead! Mabel, Your words are simply put and very comforting. I hope your tx is going as well as it can and you will be worry free and healthy forever! Love to all Terri ------------- 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 |
Posted By: hdeall
Date Posted: Apr 03 2009 at 6:05am
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And to add to all the stress I am BRCA 1+. I'm still in chemo treatments but am asking about the what happens afterwards...and the onco is saying not to worry that i'm remission.
Is it true that there really no tests to make sure the cancer is really gone?
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Posted By: trip2
Date Posted: Apr 03 2009 at 6:25am
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Hdeall,
There isn't much they do other than check-ups every 3 mos, 6 mos. and then a year. Some docs will do a scan but usually not unless you present with a problem. If you still have your breasts than you will have mammograms and possibly an mri. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sharon C Herber
Date Posted: Apr 03 2009 at 9:40am
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Hi all--I can really relate to the recurrence anxiety. For the first year or two after treatment, it would ambush me at the strangest times and places. One Saturday after doing my weekly shop at our local whole foods, I realized the road home would take me right by the office where I first got the dx and also was the road I took to the chemo and radiation centers. I practically had a full blown panic attack and started thinking about alternate routes home. Now, I'd taken that road dozens of time since finishing treatment. Why did it hit me that day? I'll never know. In the end I gritted my teeth and took the road. I was not going to let this thing rule my life.
I've just "celebrated" my 4 years past diagnosis anniversary NED, which, depending on who you believe, is a very big milestone for us TNs. The anxiety level has gone way down, but I don't think will ever go away completely. I will say, though, leading up to and with the passage of this anniversary I've been feeling very mellow. Grateful to be alive and appreciating the small graces of every day. I also really relate to the anger about the "life style causes cancer" in this thread. I was on a lecture tour in Canada a few weeks ago and saw this big article about how 50% of cancers (including BC) could be avoided by healthy living. I understand about the value of preventative medicine, but I just wanted to yell and scream "what about the other 50% of us, you *#!**". And even for those "bad life style" people--Nobody deserves cancer. One of the nicest things my onc ever said to me was about lifestyle. I live a fairly healthy life style, eat well, exercise, keep my weight down, but I do have one "bad" habit, that i don't want to change. I like wine. I have 2 glasses of wine with dinner everyday. That makes me a heavy drinker by some standards. I had read that taking folic acid mitigates the possible cancer inducing side effects and had been taking a supplement along with my calcium vitamin D, etc. I screwed myself up to ask her if she thought that was doing any good. I didn't get beyond " I drink wine and...". She turned to me and said in the firmest voice I'd ever heard her use "You did absolutely nothing to get this disease; you just got very, very unlucky. Don't let anyone tell you anything different." I believed that, too, in my gut, but it was just so empowering to hear it from the doc. Well, I'm feeling very lucky now, and I wish all the rest of you the same good luck with this nasty disease. hugs Sharon ------------- dx 03/05 multi focal with lymph involvement, stage II/III 4 dense dose A/C, 4 taxol, bil mast 8/05, 38 rads, NED |
Posted By: Nancy
Date Posted: Apr 03 2009 at 10:58am
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Dear Sharon,
What a great oncologist.
Now if we can just have that on billboards on TV and radio throughout the world. "I screwed myself up to ask her if she thought that was doing any good. I didn't get beyond " I drink wine and...". She turned to me and said in the firmest voice I'd ever heard her use "You did absolutely nothing to get this disease; you just got very, very unlucky. Don't let anyone tell you anything different." I believed that, too, in my gut, but it was just so empowering to hear it from the doc."
Print this on t-shirts, and tell those people who insist that you just were not living a healthy lifestyle and that is why you got bc. Stupid stupid people!! Don't tell me that you can prevent cancer....any type...sh** happens, and you and the other 185,000 women dx every year did nothing to cause it. Clean up the environment and we may see a change. There in lies the biggest cause of cancer, all types. Ps...I love my wine also 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 |
Posted By: cduvall1
Date Posted: Apr 03 2009 at 2:40pm
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And I too love my wine! I'm for the billboard idea. Gals, I needed to read your posts today. As with the rest of you, some days I just can't shake the Big C shadow, other days it fades off. When I come to the tnbc site and read others' stories I begin to feel better. ------------- 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 |
Posted By: Terri
Date Posted: Apr 03 2009 at 7:36pm
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Sharon, so happy you are doing well after 4 years!
Thankyou for sharing with us. I like my wine too and have been having such guilt about not wanting to give it up after recent studies indicate it to be a risk factor for BC. On one hand I want to do whatever I can, diet & exercise wise to prevent recurrence. On the other hand I DID eat well and exercise and still got cancer. Life is to be enjoyed and I can`t cut out everything that I enjoy! ------------- 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 |
Posted By: vickyann
Date Posted: Apr 03 2009 at 7:37pm
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Today I requested on my next appt could I have the tumor marker blood test that detects cancer cells in the blood as a indictor. ( Thats what i have read) My oncologist sent a message via nurse. It is not indicted in my case because i am still showing clear..(which is wondefrul). I know it has to do with my own after care plan I am trying to put together. I guess it is more anxiety. I know research says...cancer feeds on sugar. Before triple negative i never craved sweets, now when i get really scared i want them, and it makes me so ashamed knowing I owe it to myself and family to do my best everyday. I tell myself it is poison. The nodule on my lung has not changed in size, my ongologist doesn't think it is anythin to worry about.I have had two MRIS, and since it is the same sizwe he is not concerned. It is on the same lung side as the cancer so I am scared, but I am sure he knows what he is ddoing. I am going to Houston Texas this week to begin the trial study for green tea. IT is a 6 month study, and I have a 25% chance of getting the placebo. Even if I do and they learn it will build up our immune system then it ccould help one of us or our daughters. I have two. They are so precious. I am having the genetic consult this month for them. I am doing all I can, maybe to much, I do not know. I am scared,I do not want to die. I have faith in my father in heaven. I pray for the researchers and I hope they know how many of us are out here searching for something to save our lives... vickyann ------------- Vickyann Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
Posted By: vickyann
Date Posted: Apr 04 2009 at 3:28am
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Terri,
I was very tired last night and overwhelmed. One of those days.
I KNOW your husband as my husband was attracted to how we looked in the first 5 minutes they met us. Then men notice kindness, what you bring to a marriage. Over time they depend on the rhrytmn of your relationship and we go through a rough triple negative bald peroid with a little cubb, going on...
They do not see the bald they see so much love. It is up to us not to get back to beauty as much as we all need to get back to health to fight the recurrance. You are beautiful. Your words here show your heart. God be with you and surround you with the light of protection. Thank you for your note.
------------- Vickyann Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
Posted By: Terri
Date Posted: Apr 04 2009 at 5:32am
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Vickyann,
I`m sorry you were tired and overwhelmed. We all can relate! Of course you are so right about our husbands loving us for who we are inside. With this culture placing so much emphasis on looks, I need to be reminded of what really counts sometimes.
Every onc has a different follow up plan. Mine checks tumor markers every 6 months but only does a PET/CT scan 2-3 years out from diagnoses. Otherwise just does tests as symptoms occur. I think if having tumor marker tests would help ease your mind, the onc should give them to you.
As far as the nodule on your lung, what do they think it is? Besides MRI`s, have they done any other tests ie: PET/CT ?
It`s exciting that you are going to participate in a green tea study. So much has been made about the health benefits of it. I hope you are in the group that gets it (control group?), it can`t hurt and might keep you healthy.
You`re right, we must do what we can for our fellow women now and for future generations. I was asked to give up my tumor for research and I gave bone marrow for another study, but haven`t been asked to do any trials. I hope it goes well for you. Thankyou for your kind and loving words. You are beautiful too. God bless.Terri
------------- 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 |
Posted By: cduvall1
Date Posted: Apr 04 2009 at 6:06am
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Vickieann,
Thank you for sharing and for the encouragement your posts offer others. I am interested in the after care plan you are putting together. I too know it is up to me to do whatever I can to prevent recurrence. I don't know how much of the green tea study you can share with us online, but it would be nice to learn more about it too.
Your spirit shines through for all who read your posts. Keep your strong faith in the forfront of your life. God Bless!
Carol ------------- 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 |
Posted By: vickyann
Date Posted: Apr 04 2009 at 12:04pm
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Carol,
I found a video clip in Dallas Texas on the National Susan G Komen site looking up triple negative information. Dr. Brown is a researcher for triple negative cancer. Several locations in the us are trying a green tea capsule over 6 months. You have to be clear of tea for one month prior to beginning the study. They see you , give you a mamogram, lab work, they conduct a biopsy on your healthy breast and see you two weeks later, then once a month. If you look it up it is called Poylphenon E. It is my understanding the Asia population has a much lower risk of cancer due to the immune benefits of green tea. If my cancer returns I feel with the stronger immune system I have increase my chance. I am trying to make it past the 3 year mark then 5. I feel I will be watched closer over the next 6 months. I know I could get a placebo. But as i mentioned I have two daughters. I believe Columbia and MD Anderson have a study group also. The doctors office talked to me, took information to see if I qualified. I did and I have my first appt. Tuesday. If anyone wants to know more go to Polyphenon E green tea study for triple negative breast cancer. Also
Nancy may know more than me she is so informed on here. I hope this helps. All you would need to do is see if the study in your area is still open and see if you qualify. Going to Houston is 3-4 hours for us as we live in Austin Texas. My husband and I have a couple of friends we are staying with as one test is on Tuesday and the biopsy is on Thursday. Thank you for the kind words Carol.
Peace be with you all, ------------- Vickyann Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
Posted By: vickyann
Date Posted: Apr 04 2009 at 12:23pm
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Terry,
Thank you on behalf of all of us for give your bone marrow and your tumor for research.
My Doctor does not think the tumor is anything because from November to Janurary it did not grow on the MRI. Thye found it on my heart mugg test. I appreciate my doctor and staff but i feel like they are telling me we will check you on a regular basis, if cancer returns we will deal with it. I can not get them to understand I am focused on recurrance prevention. Or catch it early with all the technology we have available. I learned about the gamma knife on here as treatment for brain met cancer. I feel we are all educatiing our self with the help of this site, and each other. I am grateful for Dr. Brown in houston because it gives me hope. I am trying to realize stress is a factor and you can try to hard. Any suggestions on relaxing????....Drugs seem to help..lol
May Gods light shine on us all and keep us safe, ------------- Vickyann Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
Posted By: Nancy
Date Posted: Apr 04 2009 at 1:07pm
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Carol and Vickyann,
We have a sister Toyoko from Japan and she has recommended many teas, and I found this link for the Polyphenon E. Let me search for the teas that she has recommended. Also, have either of you had your D levels checked?
Hugs,
Nancy
http://www.polyphenon.jp/en/about/index.html - http://www.polyphenon.jp/en/about/index.html
Alkalizing foods
http://mysite.verizon.net/felipe2/id12.html - http://mysite.verizon.net/felipe2/id12.html ------------- 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 |
Posted By: vickyann
Date Posted: Apr 04 2009 at 3:24pm
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Thank you Nancy:-)
------------- Vickyann Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
Posted By: Nancy
Date Posted: Apr 04 2009 at 3:43pm
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Carol & Vicky,
Found the post that tofu made. Lori also drinks one that sounds like this but I beleive it starts with a "m".
Nancy
From tofu....
I drink a lot of water and organic tea everyday. This is my small chemo tip. The tea I often drink is a kind of green tea, so called "coarse tea (Ban-cha)" which is cheaper than green tea but has lower caffeine and higher cathechin. High grade green tea needs to use lower temperature hot water, but coarse tea needs boiled water like black tea and higher temperature hot water can make higher density cathechin which is good for preventing cancer. ------------- 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 |
Posted By: Barb-42
Date Posted: Apr 04 2009 at 3:50pm
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I am so glad to see that I am not alone as to the feeling's that I have. I keep telling myself that you will be okay and it won't come back. Then reality hit's and I know that yes it could come back but I try to focus on the current and not the what if's.
My Onc. and Surgeon are wonderful and I could not be in better hands. They are very proactive with my watch. I will continue to think positive thought's and keep moving forward. I am very excited to say that I now am wearing my very own hair. A new style that I am trying to get use to but thank God it is my own! 
Take Care, Barb ------------- dx-1/2/08 @ 42 yrs.old lumpectomy w/close margins/ 1/14/08- no nodes/stage 1/gr.3 1.5 CM IDC chemo-AC-3 Dose Dense Taxol wkly 12- 2/21/08-7/17/08 Rads-33 w/8 boosts 8/6/08-9/22/08 BRCA 1/2 Neg. |
Posted By: cduvall1
Date Posted: Apr 04 2009 at 4:05pm
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Nancy,
Thanks for your information. I had my vitamin D checked, but I found out later it was the wrong test. I do not remember the name of the best test for an accurate picture of Vitamin D levels. Will look.
I've been adding the alcalizing foods to my diet and have downloaded a chart of same.
Carol ------------- 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 |
Posted By: vickyann
Date Posted: Apr 04 2009 at 4:17pm
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Barb,
It is refreshing to know you are not alone in the fear factor. I know we vent here then we are good for another 50 miles. This is our personal fill up with sanity station then we can jump back into our families and forget about fear for a bit..
My hair is about 3 inches. I have never had short hair, but like you it is better than a wig.. My hair stylist said I will love it when my bangs and top grow more.
IF hair is my only major problem i can do it all day long. Not a big thing except when i look int mirror, then i say grow please lol
Hang in there!
------------- Vickyann Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
Posted By: Barb-42
Date Posted: Apr 04 2009 at 4:46pm
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Vickyann,
LOL! I have to laugh as I have thought that very thought as I looked in the mirror. I do like the body in my hair and I probably won't be needing perm's again. I too never had really short hair. I look at it like this. This is like the last phase to getting my life back to as much of a normalcy as I can. I still have the diabetes challenge but I am hoping to get on the pump this June. I was suppose to have done that last June however the Lord had other plans for me.
Take Care, Barb ------------- dx-1/2/08 @ 42 yrs.old lumpectomy w/close margins/ 1/14/08- no nodes/stage 1/gr.3 1.5 CM IDC chemo-AC-3 Dose Dense Taxol wkly 12- 2/21/08-7/17/08 Rads-33 w/8 boosts 8/6/08-9/22/08 BRCA 1/2 Neg. |
Posted By: Alyson
Date Posted: Apr 05 2009 at 9:20am
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Hi Barb-
I just read your post about hair. I hate being vain, but at this point I am clinging to any sense of my previous self. Prior to cancer I had long, wavy dark blond hair which I have had for years ( I am 43). I have never been a short hair person, although it does look good on others. My problem is my now extra thick hair is growing up and not down. I have a terrible case of helmet head no matter how much gel I use to tame it. My brother has the same texture hair and now I know how he has felt dealing with it-he keeps it very short. When we are togehter we look like twins, but he is now the better looking one!!! I even tried to have it cut short (Halle Berry short), but the stylist seemed as if that was an impossible feat with this mop-I give up!!! But at least it is not a wig!!!
Also, I was curious about your weekly taxol. I had dose dense treatments every 2 weeks (4x), but have read about the weekly taxol. I am terrified I did not get the most aggressive treatment although my doctors said we were extra aggressive. What are your thoughts?
Take care-
Alyson ------------- Dx01/30/08 Age 42 Stage1,grade 3 .9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
Posted By: krisa
Date Posted: Apr 05 2009 at 9:39am
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alyson, there are conflicting reports/studies on just about everything that has to do with treating breast cancer, especially tnbc. i haven't read anything that weighs heavily in favor of weekly taxol versus ddense-every two weeks. my cousin's cousin has tnbc and had AC dd and weekly taxol, she now is dealing with bone mets. it all boils down to our own particular breast cancer and genetic makeup of the cancer cell and how the cancer is affected by different chemos; most of us don't have that information, really a guessing game. adriamyacin may help some and harm others and the same can be said for any of the chemo agents.  |
Posted By: Alyson
Date Posted: Apr 05 2009 at 10:05am
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Krisa-
Thank you for putting things into perspective for me-I am just inundated with so much information. I just need to chill and trust my doctors.
Take care of yourself. I hate you are having to deal with the ovarian issue. You must be one strong woman-our precious Lord does give us strength and peace.
Hugs!
Alyson ------------- Dx01/30/08 Age 42 Stage1,grade 3 .9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
Posted By: trip2
Date Posted: Apr 05 2009 at 2:07pm
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Alyson,
In 2007, my second time around I had Taxotere every 3 weeks x 6.
Others were having it with Cytoxan.
These things will forever pop up where there is a change in something and it would drive us nuts if we didn't accept the fact we did the best we could. I felt like my treatment was lacking and it bugged me.
I had had Cytoxan the first time so maybe that was why. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: kirby
Date Posted: Apr 05 2009 at 5:12pm
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It is all perspective. We could find a million things to freak over [and I am sure many of us have]. We just have to make peace with doing the best we coulod with what we knew at the time.
Do remember that I only had 4 tx of AC. This was well before dose dense. I just had to figure it is all a crap shoot and worrying wouldn't do any good unless I knew I had something to worry about. And even then...worrying wouldn't change things. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: Nancy
Date Posted: Apr 05 2009 at 5:35pm
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Kirby, You are so right about it being a crap shoot. Lori and I were just talking about that tonight. She had ACT, all 3 every 3 weeks for 6 treatments. Then someone else has AC for 4, and T for 4, and then someone else has Taxol every 2 weeks for 8, and another Taxol every week for 12 weeks. Then they add the Avastin, or maybe Carboplatin, or Cisplatin. Damn the combintions are endless. If...and I say if...they could test the tumor before giving the chemo, and could determine which chemo was correct for your particular tumor, then maybe things would turn around. They say they cannot do this as it takes months for the testing. There has to be a way! Don't tell me they cannot do this! Everybody's tumor is different, and yet they treat all the tumors exactly the same.
Cannot worry about it is right. You would drive yourself crazy.
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 |
Posted By: Alyson
Date Posted: Apr 05 2009 at 6:03pm
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Kirby -
You are so right. You said you had 4xAC and you are doing well 8 years later. I am driving myself crazy and it is a crap shoot-the whole cancer thing. Will I ever get on with my life? I am so over my cheap self these days!!!!
 Alyson ------------- Dx01/30/08 Age 42 Stage1,grade 3 .9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
Posted By: Kathleen
Date Posted: Apr 05 2009 at 6:26pm
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Hello Alyson,
TNBC is my third cancer. I had Hodgkin's stage 3B 1975-78, and Nottingham-Tenovous stage Breast Cancer in 1999. Both of the first two considered cured. From experience I can attest that emotions run the full gammut, even when one believes most of the time that they are past danger (cured). Time really does heal. The longer you go without disease, the better things will get. Believe and it will happen.
Best always, Kathleen ------------- Yours Online, Kathleen 12/99 bc initial dx-stage 1, Nottingham-tenovus cells - bilateral mast. 6/08 TN cells, only in lungs Treatments: 6/08-5/09 Taxol & Carboplatin. 5/09+ Xeloda. |
Posted By: HairSprayMom
Date Posted: Apr 06 2009 at 2:19am
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I felt the same way about the crap shoot thing. I had 4 AC and 4 Taxotere(dense dose). Most every one I see here had Taxol or as Nancy said any other combination of things. Are we just guessing as we go? Well I always say cancer just leaves ya guessing...HAHA. We all just put on our happy face and move on through life. Most times my happy face is real, but some days it is just the mask I hide behind so I don't scare people off. Still waiting on my scan results til Wed. I had no luck with calling(no call back). But I'll know soon! YEA! Sending Love, Regina ------------- 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! |
Posted By: Alyson
Date Posted: Apr 06 2009 at 8:01am
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Hi Regina-
Sorry you did not get a call back on your scan. That really makes me mad-if they do have results they should let you know ASAP. The waiting is agony. I was fortunate that my onc. nurse was a high school friend and has known me and my family for 30 years and knows that I am a total freak-I think she was worried I would stalk her at home for the results!!! When you meet with your onc. let them know your anxiety and ask next time how they can let you know quicker. I pray all is well. When I was getting ready for my scan, my mother kept saying it will be fine... that truly made me mad.... she had no idea of my worry... she also said I was crazy to worry about getting breast cancer... so much for motherly advice!
I am in the avoidance stage- I am depressed and can't hide it well-my mask is even scary. I know I have every reason to be happy and thankful, but some days......
Please let all of us TNBCs know how everything goes on Wed.
Truly-
Alyson ------------- Dx01/30/08 Age 42 Stage1,grade 3 .9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
Posted By: Alyson
Date Posted: Apr 06 2009 at 8:05am
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Kathleen-
Thanks for your encouraging words. You are a trooper. Mind over matter-I am trying to believe all will be well. I feel time will make things better.
Hugs!
Alyson ------------- Dx01/30/08 Age 42 Stage1,grade 3 .9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
Posted By: Valkayri
Date Posted: Apr 06 2009 at 9:49am
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Hello All-
I am a newbie to the site but am so glad to have found it! I also am experiencing reoccurance anxiety and no one around who can relate. I was diagnosed last May at age 35 with tnbc tumor#1-3.7 cm, tumor #2-.5cm both grade 4. Four rounds dose dense of AC and Taxotel and a bilateral mastectomy Oct1 2008. Reconstruction began Jan2009-now "full" but ina holding pattern until after summer for the "real" fake ones to be put in. I am also a BRCA2 carrier from my dad's side.
I saw a comment on the BRCA1 stats and it is scary for tnbc, 7 out of 10 get TN however the BRCA2 is only 1 out of 7(guess that makes me part of a very exclusive group!) I am also in a trial for biophosphates and to see if they help prevent bc from metatisizing to bone(which was a good side effect when they did the original trials for them) So we will see ifthis does any good since I have also found taht tnbc seems to metastisize in soft tissue like the lungs or brain rather than bone anyway!
Anyway-that's my two cents and thanks for being here..I feel so much better knowing I'm not the only one out there agonizing:)
Blessings-
Kara
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Posted By: Terri
Date Posted: Apr 06 2009 at 10:05am
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Welcome Kara,
Although no one wants this diagnoses, we are in good company here and very lucky to have this site. No one understands us like our fellow TN`s.
There are several women who are on biphosphonates (sp?). In Canada they are prescribed to women for the prevention of bone mets. Our Connie (cg) knows alot on this subject.
Isn`t it strange how we are all TN but have different BRCA status? I am BRCA 1/2 NEG. So what`s the missing link? We all pray they figure it out soon!
Hugs,
Terri ------------- 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 |
Posted By: trip2
Date Posted: Apr 06 2009 at 10:34am
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Welcome Tara, it is so nice to have you join up with us. We don't like having this diagnosis but if we could all just come together maybe we could figure out something ourselves.
Terri speaking of the BRCA 1/2, I had posted a study that suggested brca 1 might not react to the chemo like planned. My thinking is this brca stuff may play a big part in what chemo we get. So this can get very entertwined like a web, good grief.
That is of course for those of us brca 1 but we do have other variables here for all of us. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Alyson
Date Posted: Apr 06 2009 at 10:36am
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Hello Kara:
This site has really helped me. For months, I looked at it, but then decided I needed to communicate with others in my situation. I feel like I am not going crazy and this is a normal process after bc.
I too had a bilateral masectomy (01/08) and waited to begin reconstruction after chemo. I had expanders put in 09/08 and the implants in 01/09. I love my new breasts (a nice C cup) and am awaiting nipples later this month followed by tatooing areola. It has been a long process, but worth it.
I was curious-did your dad have a strong family history of bc? I have not been tested, but bc is on my dad's side. His mom and his dad's sister had bc in their 70/80s. My onc did not think this was a strong enough history to be tested, but is recommending ovary/uterus removal. Has your onc. suggested this?
Truly-
Alyson ------------- Dx01/30/08 Age 42 Stage1,grade 3 .9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
Posted By: Terri
Date Posted: Apr 06 2009 at 11:23am
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Pam,
I missed the article ...Did it say that having the BRCA1 can make chemo not work as well or just different chemo needed? It`s another mystery with this disease if we can have the same pathology but if one carries BRCA1 gene it changes how the tumor reacts!
Terri ------------- 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 |
Posted By: trip2
Date Posted: Apr 06 2009 at 11:43am
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Terri, http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=33826 - http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=33826 ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Apr 06 2009 at 11:47am
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Terri, http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=33826 - http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=33826 And Terri, according to study they point out that basal which some are make them chemoresistant?? So how come we aren't all tested for basal? Jessie is the only member I can recall that was told she was not basal.
What do you think? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Valkayri
Date Posted: Apr 06 2009 at 1:28pm
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Alyson-
My grandmother died after a 15 year battle in 1982 and all of her sisters have since gotten bc but survived. My dad had prostrate cancer at 50 which is young and luckily we had the same general practicioner so that helped with her being proactive about me( I had my baseline mammo at 34, altho it woud not have mattered as the lump was so big and obvious in the mamo done when I found it but nice to know my Dr. was on my side early:) ) So with my age and family history they recommmended the test.
Fortunately the link between BRCA2 and ovarian cancer is very small, it is almost always one or the other not both and therefore due to my age we are waiting for any further steps in that area, but I am still getting ultrasounds every six months to be sure. The link between BRCA1 and getting both is much stronger however and I guess in my case that is the one bright spot in this...oh and the new eternally peky boobs:)
I would get the test first though. as both my oncologist and obgyn have said, "Forcing the body into early menapause is never the best choice if it can be avoided."
Good luck with everything-I am opting for no nipples because I am just happy to never have to wear a bra again and don't want anything to interfere with that:)
Blessings,
Kara
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Posted By: Alyson
Date Posted: Apr 06 2009 at 3:03pm
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Thank you for the info Kara.
According to my ob/gyn my ovaries are dead from the chemo and I am in full blown menopause since chemo was in my early 40s. If chemo did not put you in early meno. you are lucky-it is very hot!! I am on the fence about the ovary removal-I am afraid it will make the menopause symptoms even worse-maybe I still have some estrogen!
The nipple issue is personal. I love my nippleless breasts, but my husband just can't get used to no nipples (I never knew he was a nipple man?!). He has been through so much with my bc that if nipples make him happy I will have them, but they will be small!!
Thanks again and best wishes to you.
Alyson ------------- Dx01/30/08 Age 42 Stage1,grade 3 .9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
Posted By: jadesloge
Date Posted: Apr 06 2009 at 3:09pm
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So my PT said to me today. " At least the worst is over" meaning treatment. I didn't really know how to reply. Is it really over? I sort of see it as a continum with no real breaks, just some occasional relief like when a test comes back with good news. I am sure that physically the worst is over, but mentally?
Julie
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Posted By: Alyson
Date Posted: Apr 06 2009 at 3:41pm
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I think the mental part of bc is 100x worst than the physical part of treatment. I just can't escape the terror in my mind. I know it is the devil's workshop, so I try to be positive and thankful, but the worry creeps in. I pray for peace and joy in my crazy head!!
Alyson
------------- Dx01/30/08 Age 42 Stage1,grade 3 .9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
Posted By: Terri
Date Posted: Apr 06 2009 at 5:51pm
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Pam, I am frustrated on so many levels after reading this article. First of all, when I asked my surgeon if my tumor was basal like, he said it wasn`t tested for that. He said that getting into such detail isn`t important and not routinely done! And he`s the one who convinced me to give my tumor up to research. So I can`t take it anywhere else to do better testing. Back then I thought they just threw them away so I wanted to help other women by letting scientists study it. I might have had more tests done on it before giving it away if I knew they preserve it somewhere.
The article says the basal like are more chemo resistant, so that in itself means we should be running that test! Also, BRCA1 benefit from FEC but not the FEC + taxane regimen? But non BRCA 1 TN`s benefit from the FEC + taxane regimen. I am BRCA1 NEG so I should have had the FEC + Taxane and only had FEC. When I asked my med onc about Taxanes during my chemo he said I didn`t need it because I was stage 1. Meanwhile, many here who are BRCA1 have the Taxanes. It`s like it`s all BACKWARDS!!
I know I can`t undo the past and have been better about just hoping I`ve had good treatment....but then you read these articles and ask your Dr`s and they tell you it`s not important!!
 Did I understand the article correctly, Pam?Terri ------------- 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 |
Posted By: MicheleS
Date Posted: Apr 07 2009 at 2:10am
Julie~ That is EXACTLY how I feel.  |
jadesloge wrote:Posted By: HairSprayMom
Date Posted: Apr 07 2009 at 2:59am
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Me too...and also feeling quite ignored post treatment. I understand that there is a lot going on in my onc practice. He is in a large practice in a very nice facility, but sometimes you feel overlooked after treatment is over. When you call...even if they could only tell you "Sorry I can't tell you anything." at least they called you back, the social worker at mine did not even return my call. Well my Doc is going to get an earful from me tomorrow. They need to consider the timing when scheduling these things. All of their imaging is on site, so I don't feel like there is any reason to not get your results ASAP! Sorry to just rant, but I am really stressed and peeved off! At least my wait is over tomorrow! YEA! Regina ------------- 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! |
Posted By: krisa
Date Posted: Apr 07 2009 at 6:18am
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bingo! the worst is not over--i felt more secure during treatment.
now i feel like a piece of tissue paper blowing in the wind--always
waiting for a phone call, a result , an appointment, a test.....waiting
waiting waiting. |
Posted By: trip2
Date Posted: Apr 07 2009 at 7:48am
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Hi Terri, this is my third try, I guess my frustration is coming thru to the keyboard.
Yes I think you've got it in a nutshell. I was shocked to see that they already know basal can be chemoresistant yet this test is not routinely done. Why is that?
My ex-Onc when I asked if my tumor was basal looked at me like I had 3 eyes. What is this basal he says? Ha I had him and he knew it. He's gone.
Yes we cannot change what has been done but I think it is important to keep learning. The new ones need to see these studies to incorporate into their questions.
Why isn't the basal test done, get tested for the brca mutations. Both of these things and probably more can possibly affect how one does with their treatment.
Good grief why aren't they telling women this. It is their lives. We are lab rats and what are the other secrets that could help us?
I too am surprised you didn't get a taxane. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Apr 07 2009 at 7:58am
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Regina,
Next time you get a scan go straight to the medical records office and have them mail you a copy of your results and it will probably be there before you hit the doc's office.
Then you have a copy for your file. You also have a chance to look at it to see what questions you might have instead of them just telling you their view.
I always do this. I found something serious one time on a Cat scan result but didn't realize it until I became very ill and it was right there on my scan results but because it didn't apply to Oncology I wasn't told I needed to see my heart doc. Lots of reasons this is a good idea. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Apr 07 2009 at 8:02am
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The worst is over? Why didn't I know that? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Alyson
Date Posted: Apr 08 2009 at 5:25pm
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Regina-
Sending good thoughts and prayers that all went well today.
Alyson ------------- Dx01/30/08 Age 42 Stage1,grade 3 .9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |