Recurrence Anxiety |
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kirby 
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Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
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 Posted: 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 !
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kirby
dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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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. Edited by trip2 - Apr 01 2009 at 7:26am |
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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HairSprayMom
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Joined: Mar 20 2009 Location: Alabama Status: Offline Points: 137 |
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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
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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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Joined: Mar 26 2009 Location: Tennessee Status: Offline Points: 20 |
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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
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Dx01/30/08 Age 42 Stage1,grade 3
.9cm tumor, bilat masect. 4xAC, 4xTaxol,Recon.09/08 |
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: 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.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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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: 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
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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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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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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.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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mabel
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Joined: Apr 01 2009 Location: Indianapolis Status: Offline Points: 10 |
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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. |
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vickyann
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Joined: Sep 25 2008 Location: Texas USA Status: Offline Points: 127 |
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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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cduvall1
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Joined: Jun 04 2008 Location: Blythe, CA Status: Offline Points: 148 |
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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
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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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Terri
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Joined: Nov 12 2007 Location: FL Status: Offline Points: 578 |
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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 |
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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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hdeall
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Joined: Jan 03 2009 Location: Southern Calif Status: Offline Points: 42 |
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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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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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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.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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sharon C Herber
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Joined: Feb 28 2009 Location: Ann Arbor MI Status: Offline Points: 9 |
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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 |
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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
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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: 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
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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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Joined: Jun 04 2008 Location: Blythe, CA Status: Offline Points: 148 |
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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.
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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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Terri
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Joined: Nov 12 2007 Location: FL Status: Offline Points: 578 |
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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! |
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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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vickyann
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Joined: Sep 25 2008 Location: Texas USA Status: Offline Points: 127 |
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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 |
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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 |
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vickyann
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Joined: Sep 25 2008 Location: Texas USA Status: Offline Points: 127 |
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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.
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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 |
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Terri
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Joined: Nov 12 2007 Location: FL Status: Offline Points: 578 |
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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
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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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