Scared of Reoccurance |
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ssabouri 
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Joined: Dec 11 2008 Location: United States Status: Offline Points: 15 |
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 Posted: Jan 13 2009 at 3:03am |
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Dear sister
the body armor feeling is very commom, i have it still after my surgery in october, but it gets better. about the reoccurance, there is no need to cross that bridge yet, so they tell us 30% but that kind of nubmber entails alot of little point which when you realy get to know them makes the 30% very insignificant. do not let it scare you. we are in this together. take care Shane
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Breastless
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Joined: Jan 02 2009 Location: United States Status: Offline Points: 22 |
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Posted: Jan 13 2009 at 2:45pm |
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Hi Suzanne and sisters, I just wrote a bunch of great stuff and I lost it. I hate when my laptop does that! ARGG! Anyway, I haven't posted on here for about a week because my chemo treatment #5 was last Thursday and I have felt really cruddy! It's hard to believe that something that will make us better has to make us sick first. UGH! The ongoing hits and my body not ever being able to fully recover before the next one has been apparent with this one. But, I can finally see the end of these...I have one more on the 29th.. Then I can get back to me--minus the cancer. I have to BELIEVE that! It is so hard for me to read the stats at the bottom of these pages and read the posts. This TN diagnosis is surely a scary one. It is comforting to know that with all the different types of treatments out there and the different diagnosis as far as tumor size/type etc. , that we all can share the triple negative aspect of this. I hate how I feel now after this surgery and I am hoping that the body armor feeling will go away but I don't regret my choice to have both breast removed, I just wish I had known things about this surgery and I feel like I was not educated by my surgeon. It kind of makes me mad but I didn't really know what questions to ask since I was mainly concerned with removing the cancer once and for all. I envy those of you that still have your breast because I just don't know if I would be the kind of person that would not be at the Dr. constantly feeling something there. So y'all are stronger than I. I figured if I sacrificed my breast, it would spare me of the cancer and the treatments. Truth is, there is no gaurantee in anything. And, I have learned that with this cancer, there is no quick fix. I will be tested for the BRCA 1 and 2 gene next month. If I test positive, they said it will be easier to find the gene in my daughter. She is just 19. I am so scared for her but am grateful that we can know about this genetic link. I frankly am shocked at the number on here that did not test positive. Do you think they could not locate it, or it is a true negative for the gene? It would only make sence that TN diagnosis would mean positive for the BRCA 1 and 2. If I test positive, I will be having my ovaries removed as a precaution. Has anyone else opted for this? Does anyone know a superb plastic surgeon? As soon as I am healed and the neuropathy passes from the surgery and chemo, reconstruction is what I will be doing next (hopefully). It is important to me because I need to try to restore my body as much as possible. This is a long road for everyone and everyone has their own journey. I wish everyone the best possible outcome and the best recovery for a wonderful life filled with happiness and love!
HUGS! Karen
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Karen Age 43
dx 9/4 Double Mastectomy 9/11/08 dx TNBC 9/22/08 IDC Stage 2 Grade 3 Tumor sz-2.8CM Tax/Cytoxcin X6 every 3 wks 10/16/08-01/29/09 Lymph nodes-negative BRCA-Negative |
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kirby
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Joined: Oct 09 2007 Location: bay area,california Status: Offline Points: 1088 |
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Posted: Jan 13 2009 at 3:12pm |
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Karen,
There was disappointment in being negative for BRCA. It is all those mixed up emotional feelings. If I were positive there would be reason, cause...something I could put my finger on, blame ! I mean being negative should be a good thing. It was difficult just letting it all go and finding peace with "it was just my turn." Had I been positive, I would have had my ovaries removed and my dr's were all in agreement with that. Like so many on this site, if we were looking at what might be recognized as possible reasons for BC...it shouldn't have been me. Oh, well. It was going to be someone.
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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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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Jan 13 2009 at 4:25pm |
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Shane, Karen, Kirby,
I just got off the phone with Lori, and then I read your posts. That "feeling" just doesn't go away does it? Lori had blood work done last week and has an appt. with the rad onc on the 21st. Her last appt. was with the med onc in July, and then she had the BRCA testing I think in October, which was negative. Every test brings anxiety and worries.
Karen, 85% of all BRCA1's are TN, but the BRCA gene mutation is only one mutation with TN's. There are so many subtypes and perhaps that is why you are seeing so many TN's who are negative posting here on the site. Lori was ecstatic when she got the results, as that meant her 2 daughters and son would not have this worry. It does mean as you said that they will be able to find that gene easier in your daughter. Lori too said that if she was + that she would have had a opphorectomy. My maternal grandmother died of ovarian cancer in her 30's, yet that connection is not there for the BRCA gene mutation.
What "they" need to find is all the other mutations for TN's. Many of the gals who have tested + have opted for the surgery. If Caryn reads this post perhaps she can tell you what the % is for developing OVC, as BRCA+. Pam and her 2 daughters all carry the BRCA gene mutation. Her oldest daughter had surgery last year. She also was dx with BC about the same time that Pam ws dx for the second time in the other breast.
You are so right...there is no quick fix for any type of cancer. Connie wants to have her other breast removed, as she worries that it will return in that breast. You are so right...there is no guarantee. That little voice in the back of your head starts whispering at times, and then you question every little ache or pain.
What questions did you not get to ask of the surgeon Karen? Are there any surgeons who really educate the women? Most tell you only what they want you to know, and possibly feel that you would not understand.....oh they are so very wrong!!
Karen, you might want to start a new thread as to really good plastic surgeons on the TNBC Talk forum. Many have had the surgery and many will reply.
As to losing your post....try saving it as a document as you type, and then if it goes POOF!! you will be able to retieve what you already have typed. Ronda taught me that...and Donna taught me how to edit and do all tose other neat things. It's so great having you really intelligent young women as friends
 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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Kathleen
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Joined: Dec 01 2008 Location: Eden Prairie, MN Status: Offline Points: 47 |
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Posted: Jan 13 2009 at 8:01pm |
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Dear Breastless Karen,
Sad to say, it's been nine years since my bilateral mastectomy, and I still do not have any feeling where breast tissue formerly resided. I had a tram flap for reconstuction, which I would NOT recommend to anyone. A tram flap is where muscle and fat from one's abdomen is tunneled up to the chest to make two breast mounds. Women tend not to be very satisfied with the surgery from a cosmetic standpoint as well as a comfort one.
Regarding your chest tightness, you likely are feeling tightness due to scar tissue. Because of my tram flap in particular, I had considerable internal scarring and tightness. Deep massage helps tremendously. If you take your thumbs and sort of stretch a small area you'll feel slilght sharp needle sensations. Don't worry. This is just tiny scar tissue. What you're doing is stretching the scaring underneath your skin, making your tissue more pliable and movable. I have done this myself and at times gotten a massage therapist to gently do this as well.
I've gained more freedom of movement, even though much of the feeling on the front half of my torso is gone.
Hope this helps.
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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. |
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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: Jan 14 2009 at 5:52pm |
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Terri and Breastless.
Terri you mentioned your onc would not test for one to two years. I went to my general doctor for a wellness plan since there is no real after care medication for us. ( like the hormone other BC survivors receive)
I took a test (MRI)to check the protein for my heart. As you know the chemo kicks your butt. They found a nodule 3.5 cm on my lung, in October.
I retested a week ao and it had not changed in size, which means it could be a scar. I learned you can schedule your own test. If insurance will not pay you can ask if they have a discount. To my surprise it was half price when you do not file insurance. I think if you are really feeling something else is going on and no one else is listening save your money test yourself.
I know most of us have wonderful caring doctors. I have to be on charge of me. I am afraid and pep talks will help you. When you are strong again you will have more strength and that will help you too. We all are searching for a better after care program that has more hope like other survivors. I know laughter is the best meds for all of us. I would love to not think about it everyday too. Maybe that is part of dealing with it. It is a comfort to know you all think about it too.
My onc said Triple negative reoccurs more in the first three years, and the 4th and 5th year you have a better chance. I finished treatment in June. My hair, lashes, and brows are back.
I believe your body will process the information you give it. Tell yourself you are well cancer is gone. Predict you future...
God Bless you all,
Vicky
Christmas 07
finshed chemo june 08
stage 2 grade2
tacx6
mast
no recon yet |
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mommy2bigblueye
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Joined: Jan 02 2009 Location: United States Status: Offline Points: 26 |
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Posted: Jan 14 2009 at 8:38pm |
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Hi Ladies,
This is my first time posting and i have felt such a connection in reading your posts. I was only diagnosed last month and haven't even had my surgery yet and I already feel so consumed by the fear of not surviving this disease. My son will turn 1 on the same day as my sentinal node biopsy and it really makes me think about the difference a year can make. I have been pregnant or nursing the past 3.5 years of my life up until October. And 2 weeks after I stopped nursing my son, I found the lump. These past few years of my life were so blessed and filled with so much joy and now I am just overly aware of how quickly it all changed. from the happiest time of my life to losing that sense of immortality you have at 32, with two children under the age of 3. I feel slightly crazy that I haven't even begun treatment for this and already live in fear of it coming back. Seriously how insane is that???!!! After reading the posts, I tell myself to just stay in the positive, mind over matter, i can only focus on what I can control...but i agree that there is something to be said for the reality of this TNBC and coming to term with my own mortality now. I can only hope with time (as everything else in life) I will somehow come to make peace with it and find a way to focus on the life I have instead of my fear of losing it. As I read all the posts here, I hope being a part of board like this will help me along that path...so thank you all for sharing. There is such comfort in reading all your stories. Melissa For now |
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krisa
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Joined: May 21 2008 Location: Portland, OR Status: Offline Points: 1090 |
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Posted: Jan 14 2009 at 9:42pm |
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melissa,
we certainly do stare death in the face when we have a diagnosis of cancer. intellectually, we know that one day we will die but we believe it will be later rather than sooner, especially when we are young . I am older than you, but I, too, have had to deal with the concept of dying much earlier than I anticipated and I didn't enjoy one moment of it. I am so sorry that you are joining our club...the club that no one wants to belong to. There are plenty of women who have had TNBC and are still alive after many many years from their diagnosis. Take care.  |
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sydonashae
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Joined: Jan 14 2009 Location: Boise, Idaho Status: Offline Points: 37 |
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Posted: Jan 14 2009 at 10:05pm |
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Hello all! My name is Susan from Boise, Idaho. I was dx this past June with tnbc at age 33. Had lumpectomy followed by mastectomy in July. I have two small children. I just finished my chemo last week. Yeah!!! It has been very scary and stressful. I have been meaning to write on here for a while. I start radiation in February then onto surgery to remove my other breast (I've been calling myself the "uniboober"). Humor is the only thing that keeps me from feeling really depressed. I have spent weeks at home and sleeping the days away. I am just coming out of this hole and trying to get my life back. I have wasted too many days crying and sleeping my life away. It isn't going to help anything. Any suggestions on diet for the tnbc patient? I look foward to chatting with you all. It's so nice to know I am not alone. Susan
DX: 6/13/08, Age 33, Triple Neg, 2/13 nodes, grade III, Stage II |
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ssabouri
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Joined: Dec 11 2008 Location: United States Status: Offline Points: 15 |
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Posted: Jan 15 2009 at 5:35am |
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Dear Nancy
i wish i could tell you the "feeling" is going to go away completely, but surely it can get much better, and i feel looser in some places under my arms, so there is hope for the better.As far as surgeons and mastactomies are concerned the best way in my opinion is to listen to your guts. i was the type who would have gone mad if i didn't have the bilateral mastectomy. but from what i hear from surgeons having the mastectomy reduces the chances of recurrence to half so why should not we do it? i pray and hope for the best for all of us, keep happy, Love Shane
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ssabouri
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Joined: Dec 11 2008 Location: United States Status: Offline Points: 15 |
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Posted: Jan 15 2009 at 5:46am |
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Dear Susan
Welcome, you are fine and you are going to beat this thing like a champ. no more crying and wasting days away.(an occasional cry doesn't hurt sometimes though, specially if its combined with shouting something bad at your not so favorite person eg. mother in law, next door catty neighbor etc....- and throwing something goshy ike an egg, take it from me, does you wonders), i have 5 more chemo sessions to go and i will be thinking about you everyday. you are strong and my dear sister. love Shane
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sharon in Mich
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Joined: Feb 29 2008 Location: United States Status: Offline Points: 70 |
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Posted: Jan 15 2009 at 6:10am |
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Dear Nancy--I'm 3 years+ out from BLM. In the beginning the arm where they took the nodes was numb from the elbow up and I had a weird streched tendon feeling in the forearm. That has gone away and the numbness in the upper arm continues to get better. I know that is odd, because the received wisdom about nerve damage is that after 18 mos it's permanent.
The scar tissue made me feel like I had a hard boiled egg under my arm pit. I had 4 or 5 sessions with a really good rolfer, and that helped a lot. i actually got my arm pit back. Sharon |
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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: Jan 15 2009 at 7:42am |
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Dear Melissa,
Just saw where you are beginning this crazy "journey". Let me assure you that there will be somone here for you every time you post and will answer every question you may have. Life changes in the blink of an eye when they say....you have cancer.
Sweetie, at 32 this is not what you or anyone would have expected. My daughter Lorii, at 45 when dx, was overwhelmed, and at times still is. You are so right that you should not worry about things over which you have no control....but that is probably easier said than done. But....there is strength in numbers Melissa, and that is why this foundation was started, and this site provides the place where yoiu can come and state your true feelings. All here will understand just what you are feeling at all times. So come and vent, and express yourself.
I am going to send you a private message with my email so that I can give you directions for all the resources that we have. How did they determine your diagnosis...did you have a biopsy?
Don't be a stranger now that you have joined
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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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Jan 15 2009 at 8:02am |
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Hi there Susan,
So good to have you with us!! You will never be alone ever again sweetie
, as there will always be someone to reply to your every question. My daughter Lori spent days/weeks after dx sobbing and screaming as to not "why her" but "how her".I do like your sense of humor and I believe that you have a new word for the dictionary...."uniboober".
 Have to write that one down!We have a list of books here on the iste which cover diets. Lori and I have recommended the book Anti cancer..a new way of life.
With 2 small children, I would imagine that these past months have ben fairly hectic to say the least. I will send you a private message with my email so that I can send you info on the resources here on the site.
You are not alone anymore
 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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becca
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Joined: Aug 20 2008 Location: Colorado Status: Offline Points: 153 |
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Posted: Jan 15 2009 at 8:04am |
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I have the same feeling in my armpit...feels tight and my bra hurts me when I have it on for more that a few hours...seems like the seams in all the bras I have tried hit right in the area where they removed the lymph nodes...will this get better ...it has been 1 year since the surgery?
Becca
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Age58 DX 12/07
Grand Junction, Colorado Lumpectomy 1/08/08 Stage IIIA grade3 5/19 nodes chemo 5/08 radiation 7/08 clear pet 9/08 |
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salvageprincess
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Joined: Jan 15 2009 Location: United States Status: Offline Points: 1 |
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Posted: Jan 15 2009 at 2:29pm |
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hey, I'm in the same boat as you. I am done with surgery, chemo and radiation. I had a PET CT- that I had to ask for, and have now a very strange feeling in that breast that was cut up. I had lumpectomy Right Breast. I started reading more about TN and scarred the crap out of me- My aunt had it and that was 17 years ago. I started working on the diet and excercise this this week. Hard to do with -40 below zero this week. Gained 20 pounds on chemo-steroids, etc. The more I read the more I get spooked. My doctor said that the feeling that I had was nerve regeneration and vascular regeneration. He did not feel anything. It's hard and hurts. I feel like a cow in the pasture with mastitis. It can totally consume your mind. I'm 43 and have a 15 and 12 year old and own and operate my own business. It really took a kink out of my schedule and screwed things up, some. Now I'm trying to regroup and get back to normal. I got spooked when this hardening started about christmas. Numb under my arm yet. He did say that if was still bugging me and bothersome, that masectomy would be the option. I thought about it. He also said that the 33 radiation treatments I had do damage and actually still work for up to 1 year after the treatments. Still receiveing benefit. All I know is it feel very wierd and I don't like it. So- Breatless- I know what you are thinking. Right now- I feel like an old cow out to pasture. I did write a kids book that's funny over the deal- and other stories. I promote getting mammos at my auctions. It hurt when the chemo did a number on my body and people didn't recognize me from my advertising. that hurt. So- need to get back in sinc. I wish a gym or group was closer and more convienant. Live on a farm and still work like a dog, but that's not aerobic enough I guess- so we are working on that. any help on follow up things that should be done would be great- or anyone that think that masectomy is the way to go. From what studies I see that it is the same unless progeressed or node positive. Mine -7 were negative. Triple negative, Node Neg. pet Ct neg. in Dec. Diagnosed from me finding it in November while booking an auction in Colo. My arm hurt all summer, too. smaller Grade 3- I was Stage 1. I had 12 weeks of chemo- cytoxin, Adrimycin, Taxol. it sucked.But I worked through the whole deal. Did many auctions with no hair.
www.vanderbrinkauctions.com Yvette VanDerbrink |
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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: Jan 15 2009 at 4:21pm |
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Hi Yvette,
WOW!! I just googled your site. I am here to tell you that you TN gals are all beautiful!! So, -40 in Minnesota, well one has to eat to stay warm sweetie and I can't imagine running or even walking 2 minutes in that weather.
Your doc is so right...rads do damage, and they are with you for life sometimes. Have you gotten a second opinion as to the mastectomy? Why is the doc recommending a mastectomy if the scans did not show anything?
I do know that my daughter Lori is experiencing the "pulling" and tightness also and sees her rad onc next week. Lori had a mastectomy. Her treatments all ended January 2008. She just lost her eyebrows and lashes for the 5th time about a month ago. Lori had the same chemo regimen as you did and 28 rads. Her stats are at the bottom of my post.
So glad that you joined us Yvette, and many of the gals will reply to your post.
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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sibu
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Joined: Jun 27 2008 Location: FL Status: Offline Points: 660 |
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Posted: Jan 15 2009 at 4:28pm |
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Just a side note on the pulling and soreness--of course, have it checked out.
Many people have also commented that massage can sometimes loosen the tissue and relieve pain, if it's just a question of that. |
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Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
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krisa
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Joined: May 21 2008 Location: Portland, OR Status: Offline Points: 1090 |
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Posted: Jan 15 2009 at 4:35pm |
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I go to a PT plus my regular gal LMT (who got me through TMJ and poor posture)..has made a world of difference. surgery causes scar tissue and radiation melts your muscle, tendons, fascia, etc together into a velcro like substance. (my definition) It takes time, but worth it. My posture has improved--after surgery and radiation I was caving in and had problems using my arm and shoulder...it is much much better!
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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: Jan 15 2009 at 8:16pm |
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Dear Sisters,
God Bless Nancy for the hours she gives us all in comfort.
It is amazing what we can endure when we do not have a choice.
It is wonderful when chemo is over and you do not feel sick anymore and your taste return. I have a blanket I hate now because it reminds me of that which made me double over me with unbelievable nausea.
As for me my lashes and brows they grew so quick I could not believe it...
My hair is a good inch and a half now... I had no hair anywhere in June.
Your life returns to normal. To the life you took for granted, all the things you told God if you help me through this I will be grateful forever. When you are sick you remember all the love, the smiles, even walking through a grocery store with a bounce in your step. Walking and doing simple things you long for, because everything is hard.
So what are we to do?
The one thing that makes me the most frustrated, the most mad.... is no after care plan. Just schedule your appts to the see the wonderful doc, and they are wonderful.. Everything is triple negatives fault..not the doctors..Some will live, some will not. Are you kidding me. Make it two years or three..that's it...Waiting to see what will happen steals our joy. I think that is why we all get so scared...
I say lets share what we are going to do to kick triple negative to the curb!
Check list sisters.
Tell us what you are doing?
What is the hardest... ( for me, eating my emotions, you get to that point you do not want to be negative to all your supporters after all, to them you are not sick anymore chemo is over,. you sound ungrateful or something. If you have been there you know what I mean. If you share a fear you get a pep talk which truthfully is what we need. (and want)However sometimes you need to be afraid, you need to say out loud, I do not want to die. So I have been eating which makes me so mad at myself grrrrr) I have not been heavy my entire life, I have work at it all my life, and now I can't control that either. I remember thinking when they told me I had cancer, after the shock looking for the positive , and I said well at least I will not have to worry about weight...Most ppl think of dying,,not me...you are in such denial. I do not know what I am in now. If any of you know..please tell me...
What is working, what is not.
I have to conquer the fear.. Share one thing that helps the fear anxiety in your life.
My one thing. I know I can make it through February. When February gets here I will make a plan to get through March. Not one day at a time, although I hear that is perfect for some people for me its... one month. I can do one month..Can you?
Mammogram..no brainer
Colon... check that organ
scheduled blood work to make sure we are healthy
Sunshine or vitamin D
Vitamins, I also take a few things to make my hair grow.
I ask my oncologist about the inhibitor and the vaccine to help with recurrence. They are both in the testing phase. He assures me in the next five years triple negative research is going to be so far advanced we will all be amazed.
Till then...
Help me, help your self.
Lets tell each other what we are doing to save our own lives..
I want us all to conquer the fear of the unknown future.
Remember..It is amazing what we can endure when we do not have a choice
Love to you all,
Vicky
dx Christmas 2007
surgery mastectomy January 29th 2008
chemo TAC finished June 2008
Stage 2 grade 3
waiting to schedule reconstructive surgery in a few more months
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