Scared of Reoccurance
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Topic: Scared of Reoccurance
Posted By: Breastless
Subject: Scared of Reoccurance
Date Posted: Jan 02 2009 at 12:54pm
| I have triple negative breast cancer and had a double mastectomy in September. I am currently taking chemotherapy (Taxotere and Cytoxin) every three weeks. I have 2 remaining treatments. I recently asked my Oncologist about reoccurance and outcome of woman with this type of cancer and was shocked when she told me it was 30%. I am so afraid of living with the worry of this. I also believe that a nerve was severed during the removal of my breast. My oncologist said it could be a year before I have normal feeling in my arms. My chest feels like I am wearing body armour. I need some encouragement. Is anyone out there feeling like me? |
Replies:
Posted By: Terri
Date Posted: Jan 02 2009 at 1:44pm
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Hi Breastless,
Welcome to the site. I too am struggling with thoughts and fears of recurrence. I finished all my treatments the end of April 08. My onc doesn`t believe in doing scans until 2-3 years out of tx so I have to hope my body is CLEAR of bc. I can tell you that I wish I would have had a double mastectomy like you. My surgery happened before I even met with my onc so I was told the outcome was the same. There`s been a study and thread here that is controversial but seems to indicate that double mast is better at preventing recurrence that lumpectomy. So you might be in a better position already!
 You are also getting Taxotere which some studies conclude can help us TN`s more than standard chemo. So you have more going for you than you know sweetie!
I can`t speak to your lack of normal feeling in your arm. I`m sure some others here will chime in. I hope it gets better for you everyday.
I am trying very hard to enjoy life and not worry about recurrence & mets. I still think about it every day. But I know that worrying about things can sometimes make it happen and wastes the time we have. I am about to start yoga and pilates to try to feel better physically and hopefully it will put distance between dx and tx and a healthy life.
Best wishes
Terri ------------- 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: Jan 02 2009 at 3:06pm
|
Good evening Breastless,
Honey I bet there isn't a woman on this board that isn't scared of this disease and what might happen. But I can tell you that for me and others that have discussed it time is your key. The further you get from your treatments the less space it will have in your mind. If you let it overwhelm you then cancer wins and you don't want that, you want control of your thoughts.
So when the thinking or worrying gets rough, go do something to distract you, you might have to work at it bit by bit but it will slide to the back of your mind and no it isn't going to completely go away.
May I ask your age? Have you had the genetic testing, family history?
What are you statistics?
For genetic testing info check out http://www.facingourrisk.org - http://www.facingourrisk.org Next time you see your Onc would you ask him where he/she got that number? Unfortunately they still know so little about tri neg I'm interested in where these figures are and how they are based. Whatever the case, they (the docs) cannot know for sure that is something written in cement for you. Most of what you read on the internet is old info to be ignored. You have to stay within the confines of current to maybe 3 yrs back.
I had a lumpectomy in 03 and a bilateral mastectomy in 08. Both areas under my arms have the weirdest feeling and I don't know really if it every goes away completely. Usually they remove some nodes to check for possible spread so therefore your lymph system isn't flowing like it should be.
Maybe someone who has had a mastectomy farther out than you or I could tell us if this is always this way. And yes I feel like a tight band is wrapped around me but it has lessoned up with time but I still am aware that things are different now physically.
It's not that far from when you had your surgery so you've still got some recovery to get thru. I'm glad to hear you only have 2 treatments left, then you can work on getting you back.
 Write anytime, ask questions, vent, cry, tell a joke, we don't care. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: sibu
Date Posted: Jan 02 2009 at 3:08pm
|
Hello Breastless and welcome! Yes, I had a similar experience after visiting the surgeon who told me "bc is no longer considered a life-threatening disease." Next stop, onc.'s office, where he broke the news about being triple negative, and told me my chances for recurrence were around 40%! TN is not like other bc--it is often hereditary, often hits young, is very aggressive. It can take the wind out of you to hear that. Now for the encouragement part: TN do respond better to chemo. We know that after bilat. mast., chemo and radiation, we generally don't have to take chemo pills long-term. In a sense, it may be a plus to know that we have to take things into our own hands with diet, lifestyle and mind/body/spirit work. You have found the best resource possible in this forum, for any questions you have about tn as well as an outpouring of love and support. Come back often! Best, Donna PS It may be helpful to add your 'stats' with your signature, so people can know where you stand when they reply. ------------- 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 |
Posted By: kirby
Date Posted: Jan 02 2009 at 7:08pm
|
Terri & Breastless,
It is not always doom & gloom although when so new it feels that way.I was dx well before they even recognized TN. Tx then was different as well. I received half the amount of chemo they now seem to recommend and before dose dense as well. I post on occasion to let you know there are long timers out here that have not had reccurance and have only had lumpectomies. I have also never had a scan or tumor markers.My onc who I do have a lot of faith in doesn't believe in them for random testing. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: Terri
Date Posted: Jan 03 2009 at 4:44am
|
Kirby,
It`s ironic that you posted on this because, believe it or not, you`re the one I think of when I find myself worrying about recurrence. I`ve even told my mom & husband about you and the treatment you had. Thanks for being an inspiration to me Kirby!! ------------- 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: Jan 03 2009 at 5:39am
|
Thank you Kirby, we all like to see your posts.
Do you still have check-ups from your Onc and if so how long does this go on? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lauriejn
Date Posted: Jan 03 2009 at 6:00am
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Breastless: Its a strange thing this trip neg. I was diagnosed in October, hadn't started treatment yet when I was diagnosed w/recurrence already- bone and supraclavical lymph nodes...which led to my question- could this be a recurrence if the original wasn't gone yet? HA
The point- worry leads us to believing it will happen- self fulfilling prophecy. That sort of takes life away from us from living to the fullest. Take each day at a time, live your life. Let your doctors worry, and you let them know when you feel something isn't right in your body.
Stay positive- peace.
Laurie ------------- Dx Oct2008- IDC Gr 3/Stage 3C Mastectomy 11/7/08- 6/21 nodes Bone Mets dx Dec 2008-Stage 4 Albany, NY BRCA neg |
Posted By: pppinaz
Date Posted: Jan 03 2009 at 6:37am
Breastless, and Beautiful (that is what I will call you. Just like a stranger to take liberties huh!!!??  Lets see, I was diagnosed on 8/22/08. Between then and 9/5/08 had every test in the world and had my first chemo in less than 2 weeks from diagnoses. My life was a whirlwind. My tumor which was approx 4 cm in February was ignored by my OB and written off as fybrocystic change (idiot). So 6 months later it was 6 cm and my oncologist decided that dose dense neoadjuvant (pre-surgery) chemo was necessary to attempt to shrink tumor and halt the advancement as was already node positive. Thank God this worked for me though it hasn't been easy. I had a double mastectomy on Dec 1st, and still feel weird. They removed 23 nodes during surgery. I too hope this feeling goes away. I have just begun round 2 of chemo with Taxotere. Then will have radiation. Then... then... then... If it helps any to read the journey of another TNBC sister: I have a blog (good, bad, ugly, funny...you have to read from the bottom up for it to make sense as new posts show up at the top...) please feel free to read: diaryofamadwhitecancerpatient.com I too am frightened about recurrence and wish there was a guarantee or more information out there on how to keep this crap from coming back. I am 44 years old and plan on a LONG FULL Life. I guess I next need to heal, finish chemo, finish, radiation and if there are any good diet counselors out there, please let me know what I can or should be eating. Try to remain positive as you go through this, I know it is hard, but negative energy causes far more stress for your body and your body needs to remain strong. God Bless You.  |
Posted By: Breastless
Date Posted: Jan 03 2009 at 12:48pm
|
Thanks Pam, Kirby, Donna, Laurie... all of you!. Please tell me what your friends call you,pppinaz or what you would like for me to call you since we are not strangers anymore! ------------- 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 |
Posted By: base
Date Posted: Jan 03 2009 at 1:38pm
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Hi Breastless, I am over two years out. Sometime I get scared, and think I will get mets but I think about it less often that I used to. I try not to think about it as there is no real point in worrying about it but that is easier said than done.
I would be curious where she got that stat from. When I was asking about lump+rads vs mast, the recurrance rates were lower for both. Also, the stats frequently seem to be rather generalized so actually less relevent....
hug,
Saskia ------------- dx 6/06 @31 Stage IIIA, grade 3, ER-/PR-/HER2-, 5cm BRCA1and2 negative 6/06 4 dd A/C, 4 dd Taxol 10/06 lumpectomy, SNB 12/06 radiation |
Posted By: Breastless
Date Posted: Jan 03 2009 at 2:51pm
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Kirby, have you asked why your Oncologists doesn't believe in scanning? I am very curious as to why? I am wondering if there are any articles or documentation that may say that the scans can be harmful or increase or prompt cancer growth for TNBC. A friend of mine who's mother died from BC when she was very young, just cared for her sister last year who had TNBC and a bi-lateral mastectomy. She was told mammograms can increase the risk of TNBC so she won't have them. When I saw that your Oncologists doesn't believe in them and then a post yesterday from a woman who's doctor doesn't scan until 2 years from dx. I just wonder...and my Oncologist said she will scan me every 3 months for the first 2 years! After that I can go to every 6 months and then by the time I reach 5 years I can come once a year. It seems with scanning like this, I will be scared and worried most of the time. I too trust my Oncologist. How on earth do we know what is best? Thanks. ------------- 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 |
Posted By: krisa
Date Posted: Jan 03 2009 at 5:42pm
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Karen, my Onc doesn't like to do scans unless I have symptoms. It does expose a patient to more radiation (CT) so, we have to weight the risks and benefits of doing scans. You are in charge, so do what is comfortable for you. |
Posted By: Breastless
Date Posted: Jan 03 2009 at 6:32pm
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Pam,
I just re-read your post to me. Are you going to have any reconstruction done? I can't imagine feeling like this. I also know that once I am through with chemotherapy, that I still have a lot of recovering to do. I am no where close to feeling like I can have reconstruction, I just believe it is something that I will want to do. I can't even put a bra with forms around me right now without it hurting. I am also very puffy up underneath my arms. Do you have that? Are you working right now? I have taken off until my treatments are completed. I hate the thought of going back to work in a wig. I feel so different about everything. Emotionally and physically.
Breast Cancer changes you, it just does.
K ------------- 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 |
Posted By: kirby
Date Posted: Jan 03 2009 at 8:05pm
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I still see my onc 2x a year. I see the surgeon 1x a year. He just changed that from 2x last year. I see the gyn once a year so I am being checked STILL on a quarterly basis. And an annual mammo.
My onc has stated the same as Krisa's. I hate to quote and get facts wrong but I believe for something to show up on scans, it cannot be detected until it is a fairly good size. Perhaps 1 cm. Not sure if that is limited to just a CT. He doesn't do blood work because of the false negatives/false positives. Doesn't find that it is a reliable tool unless it is known that there is active cancer. In addition, he feels the emotional toll it puts the patient thru, being reliant on #'s is not worth it. I have actually seen this on another group I am in, where a member has had blood work done and the #'s have changed and they are completely freaked until it is redone. Sometimes these #'s do vary, within a range. But if it is always fairly constant, then changes higher by a few...it is so easy to become so alarmed.....what may be needlessly.
For me, I had to just find a spiritual place, making peace with my life and not feeling like cancer owned me by worry. Fortunately time does make it easier.
I was age 45 when dx. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: kirby
Date Posted: Jan 03 2009 at 9:06pm
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thanks Terri, glad I can be inspiration. I know when I went thru it, I didn't want to hear any more awful stories and about what I couldn't do. I wanted to have life as normal as possible. It was great to hear from those few people that seemed more positive. Fortunately, my onc was one of them.
A few years after tx I somehow got involved in an online group that Caryn Rose was in as well. It was set up by a BC survivor that wanted to write a book. I didn't care much about that but the posting with all these other women was quite cathartic. It was great group of women, that I still chat with. Very positive people. Anyway, the book was published last year....I Am Not My BreastCancer, by Ruth Peltason. It is a great book. Very different. Hard to describe. More on the actual emotional issues that confront us all. Look it up, you may find some inspiration there too. There were quite a few young women involved. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: Terri
Date Posted: Jan 04 2009 at 5:30am
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I`m actually reading that book right now! It was on Nancy`s reading list. I received it from my secret santa after posting it on my wishlist at work. It`s great so far. Was your id kirby there too? Right now I feel like I am suffocating in death b/c a friend of mine and my uncle just passed from c. I have a funeral today AND tomorrow. I can`t sleep well and when I do I`m dreaming of c. My husband feels I need a break from bc because it is getting me so down. It seems when I`m trying to move ahead from bc I get one step forward and 2 steps back. I hope 2009 is better for all of us!! Terri ------------- 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: rena
Date Posted: Jan 04 2009 at 6:19am
| Hi Breastless and everyone. I was diagnosed when I was 37. That was in 1986! I had 22 positive lymph nodes and an ER/PR-negative tumor. In those days, there was no HER test. My oncologist has told me, though, that since I was young, had an apparently aggressive tumor, and (as I much later found out) BRCA2-positive, there's no doubt that I was a triple negative. At any rate, here I am, alive and well 22 years later. It's true what has already been said here: TNs respond very well to chemo, and time is our friend. For me, the first three years were the hardest--worrying about recurrence. With each day, month and year that you get farther away from diagnosis, the easier it will get. I was told that I had "a poor prognosis." So, when your doctor starts throwing around numbers like 40%, think about me and not about numbers. Wishing you well, Rena |
Posted By: Terri
Date Posted: Jan 04 2009 at 6:50am
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Hi Rena,
Wow that`s great that you are doing well after 22 years. Thankyou for sharing and giving us all hope! ------------- 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: sibu
Date Posted: Jan 04 2009 at 3:30pm
|
Hello Rena!! I will assume you're the Rena from Komen... Glad to see you found your way here. On the scanning--my onc. is of the same opinion. He does not recommend scans unless there are ongoing and progressively worse symptoms. Here is one article from Mayo Clinic linking radiation to causing cancer: http://www.mayoclinic.com/health/ct-scans/AN01777 The bottom line is that we really don't know the unseen effects of these powerful machines and the radiation they emit. As I understand it, the PET/CT scan measures quickly growing cells and not necessarily tumors above a certain size. My report gave measurements of the growth areas, as well as an "SUV score" which tells us how quickly the cells are growing (and therefore how likely it is c). I'm all for staying positive and not worrying, but I would/will make different choices for my life if I know I am stage iv. I have young children who would benefit from transition and the resources we have would need to be distributed differently. I don't know why we are all so afraid to talk about or experience the process of death if that's the reality. Reminds me of ladies in our parents' generation who didn't talk about breast cancer. It didn't make it go away. Seems a healthy thing to do. I apologize in advance if that strikes a few nerves. Love to all, Donna ------------- 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 |
Posted By: kirby
Date Posted: Jan 04 2009 at 4:21pm
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Rena, I am so glad you explained. I wondered how you could have known your status.
Terri, Kirby is my actual name, RC was my pin name for the book. Glad you are enjoying the book.
Donna, discussing death is the hard one. It seems if we could be more open about it, perhaps it wouldn't be as fearful. I know I do my share of denial so maybe if I were in a closer position to death I may feel differently. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: alaura
Date Posted: Jan 04 2009 at 5:38pm
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I have been reluctant to write to any forums because I am still at the stage where I can't believe this is happening. I am 37 and was diagnosed late last July. I have had neoadjuvant chemo weekly from August until Nov., a 10cm lumpectomy, start weekly chemo again next Friday for 12-16 weeks , then radiation. I was given an aggressive # of an 8 out of 9. This is not something I have seen posted on peoples websites. From the day I was diagnosed in July to 2 weeks later when I started chemo the size of the mass went from 1.2 cm to 4.8. Hence the high number I guess.
I luckily live in Seattle where there are many incredible doctors at Swedish, UW and Cancer Alliance. After interviewing 2 Onc and 3 surgeons, I went with Seattle Cancer Treatment and Wellness Ctr. I chose this place, rather than the others for many reasons, but the biggest is that my Onc now, believes TN should not be treated like regular BC. At this Ctr. I get Acupuncture while doing chemo, see a nutritionist who has me on many supplements to stop neuropothy (sp), etc, and a wellness counselor. My point in writing this all, I guess, is that I am coming out a a severe depression from these same fears. I have never really had depression before so when my eyelashes and eyebrows fell out about 3 weeks ago, it all started. Then I found out I only have 15 days left of insurance on FMLA and have to come up with $800 a month just to keep insurance. All this started freaking me out and spiraled out of control. It started with crying constantly, couldn't get out of bed, nor did I want to. I started finding horrible stories about this disease on the internet and basically was not able to see any other path than death. I am still having problems with it but have talked to a couple of people who said things that made me come out of the deep depression part. ANyway, I guess because this is my first time writing, I am blabbing, I too am just freaking out. Alaura dx: July 28, 2008 37 years old TNBC, 4.7 cm lumpectomy 13 chemo, 12-16 more to go (weekly) neoadjuvant no nodes, stage 3 aggressive scale 8 Blog www.caringbridge.org/visit/alaurakeith |
Posted By: krisa
Date Posted: Jan 04 2009 at 5:46pm
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alaura, your number 8-9 is, i think, a grade 3 cancer--like most members have. depression---you are not alone in that..most people i know go through depression and anxiety after hearing that they have breast cancer-normal but painful. i wish i could help you with the financial, perhaps someone on this board can give you some helpful information. your onc is a dream come true! |
Posted By: Nancy
Date Posted: Jan 04 2009 at 6:06pm
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Alaura,
You are not babbling sweetie, you are scared just like any other person who has been dx with cancer. TNBC responds very well to chemo, and from what you have written, it appears that you have a very aggressive onc. That is a really good thing.
We have several gals here on the site who are from the Seattle area. Heather...."myjourney" is one and she is younger than you, and I believe she goes to Swedish.
My daughter Lori finished all her tx last January and has just lost her eyelashes and brows for the 5th time.
Now...to the insurance....I will email Pam who I know will probably be able to find info for you as to help with that. I cannot believe that they can stop your treatments now. That would be unheard of!
Lori also is a Grade 3, as are most of the women who are dx TNBC. Her stats are at the bottom of my post.
I will get back to you...I promise.
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: Breastless
Date Posted: Jan 04 2009 at 6:19pm
|
alaura,
I know exactly how you are feeling. I was diagnosed in September and had both of my Breast removed within days of hearing that my 2.8 cm tumor was cancer. My mammogram was clear in April, so it grew that big in God knows how long. TN is aggressive and fast growing. I too became extremely depressed after I started searching for information on TN Breast Cancer. I also stayed away from forums until just a couple of days ago, when I found this site. This is the hardest thing I have ever had to go through and it does feel like it is the end at times. I began my chemotherapy treatments in October and I still have two more to go. I am afraid of the future now and I am a different person both physically and emotionally. I hear that it gets better as time puts distance between diagnosis and treatment. I can't wait to feel like I can live again. I too was faced with my FMLA running out but I was able to get more time through the leave pool where I work. Worrying serves no purpose. I also found out that the Oncology office where I am treated sees patients even when they are not insured and even if they can't pay. They do not turn anyone away. I didn't know this until one of the councelors there told me. I think you should ask, maybe the center where you go, will continue to treat you even if your insurance lapses. You shouldn't have to worry about this with everything else you are going through. Did you find your lump yourself? I found mine in the shower. You will get through this one way or another. Lean on those that lift you up and help you feel better. I have always been a giver, so it was hard on me to depend on others. Sometimes you just have to scream and cry and get it out. It's ok to be weak. I have just about lost all my eyebrows and eyelashes too. The hardest for me was losing all of my hair and not having my breast. My femininity went out the door. I know what it feels like to cry and not feel like you can stop. To not want to get out of the bed and not see or be with anyone...I understand. It is normal, I think. I applaud you for reaching out.  Everyone on here has been great and I know you can gain some support from this site. Write anytime. Love and Hugs-Karen------------- 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 |
Posted By: alaura
Date Posted: Jan 04 2009 at 6:39pm
|
Thanks for your responses. My Onc. is very aggressive. By the time it is all said and done I will have had about 29 weekly treatments. I have not had chemo in 2 months because of the surgery and now I know what it feels like to be off it for a while. I still do not have all of my energy, but I have a taste of what it will be like.
Everyone keeps telling me to join a support group but there are no triple neg. groups I can find in Seattle and I don't feel like any other cancer or BC groups will satisfy that support feeling. Maybe I am wrong but I feel like when people say they have/had BC, I ask if it was TN. When they say no my first thought is we don't have the same kind of cancer, though it is technically in the same place. As far as your ? about the lump, I actually felt a pain in my breast first. From what I understand it is not common to have pain, but thank god I did. I was scheduled to have shoulder surgery from a snowboarding accident, the day after I was diagnosed. When I had my pre-op with my shoulder surgeon I kind of jokingly asked if he and the cyst doctor could do the surgery at the same time. I just knew it was a cyst. Obviously not a cyst. I think now the reason it hurt was because it was in my pectoral muscle. I responded to your caring bridge. I too am on there. Your wig looks great. The week after I found out, I had a wig made of my own hair. It was cut and made the same day. Pretty awesome. dx: July 28, 2008 37 years old TNBC, 4.7 cm lumpectomy 13 chemo, 12-16 more to go (weekly) neoadjuvant no nodes, stage 3 |
Posted By: Nancy
Date Posted: Jan 04 2009 at 7:05pm
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Alaura,
I sent Heather a private message telling her that you live in Seattle. I know that she will respond. I also sent an email to Pam concerning your insurance, but as Karen has said...they will not deny you treatment.
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: myjourney
Date Posted: Jan 04 2009 at 7:06pm
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Hi there Alaura!. I live in Seattle, and would love to be here for you. I'm going to PM you right now and give you my phone number. Heather PS This time next year we can go snow boarding together! How's that for something to look forward to! ------------- 33 year old 1.8 cm tumor/Node Neg Lumpectomy 7/1/08 BRCA 1 & 2 Negative AC DONE!! 9/17/08 Four of 'em Taxotere done! 11 of 12 ~1/31/08 33 radiation My blog: heathersjourneytohealth.blogspot. |
Posted By: rena
Date Posted: Jan 05 2009 at 9:33am
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Hi again everyone. Donna, good to "see" you!
All the fear and uncertainty and depression is so hard, but also so normal. And it does get better with time. I know--easy for me to say because I've HAD a lot of time. It takes faith--whether it's religious faith or just a belief in yourself or in whatever you believe in. What other choice is there? Either we believe that we can do this, get through this, and then get on with life, or we don't. I'm not being a Pollyanna--it's not really either/or. There are good days when we think, "I'm going to be fine," and then there are the darker days when the fear takes hold. Now I'm going to say something that you may think is weird, but it may be the most important thing I've learned about fear in the past 20 years. My instinctive reaction to fear when I feel it is to try to push it away--to medicate with food, to distract with TV, or even engage in some healthier activity, such as taking a walk. The problem, though, is that I can't push away fear. I have to embrace it--it's a part of me, and trying to push it away is like trying to push away of piece of myself. What helps me more than anything is to see the fear as a child. Would I push away a frightened child? No, I would embrace her and comfort her. When I do that with the fear (both in my thoughts and physically--hugging myself), it makes the fear dissipate much more quickly than when I fight against it. Okay, maybe I've lived in hippy-dippy California too long, but I'm telling you--it really has worked for me and made it much easier to deal with the fear. (By the way, I still medicate with food and TV at times--and I enjoy it!) I'm so happy for you that you have the Internet and sites like this one. What I wouldn't have given to have the kind of support you have here. But in 1986, no Internet. People were only starting to talk openly about breast cancer. Nancy Reagan's diagnosis in 1987 really helped with that. I was interviewed on local TV to talk about my experience. Watched the video of that recently--boy, was I young and skinny! As far as talking about death, I think we all have our own way of coping. Some people feel better and less stressed if they "get their affairs in order." I've been doing that for the past 22 years, and I STILL haven't made that video for my daughter. She was 2 when I got the idea, and she's 24 now. Life gets in the way of thinking about death--my wish for you is that that's exactly what happens for you. Just keep living life. Unless we get hit by a truck (or thrown off a bridge, which my sister has threatened to do to me), we always have time to plan for our deaths. I think it's more important to plan for living. That's just me, though. We're all different. OK, I'll shut up now. I'm sending hugs to you all. Love, Rena |
Posted By: Diamond2Wheels
Date Posted: Jan 05 2009 at 12:54pm
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Wow Rena! Well said! You're like an intermission that tell you to stretch your legs and get some pop corn! Yes, stuff happens but mostly life...we're all in it and deserve to treat ourselves accordingly! Oh, and about your sister ------------- Tia-dx 2/14/2006 5/4/2010-L Mastectomy & Pectoral muscle removed & lymph nodes - had Gemzar, A/C, Taxotere, Navelbine, Xeloda, Doxil On PARP clinical trial at moment. |
what a clown! Hugs of Love, TiaPosted By: kmartin
Date Posted: Jan 05 2009 at 1:07pm
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Hi Karen,
I have two examples of women I know with > 5 years survival without recurrence....
My boss who was 58 when dx with TNBC, 2 positive nodes had lumpectomy, CT and RT
My aunt who was 45 when dx with TNBC, 3 positive nodes had bilateral mastectomy, CT and RT ...
Both had Taxotere, Adriamycin and Cytoxan and 33 RT treatments.
It does help to have concrete examples in your life...use mine : )
Also, when the negativism creeps in to my mind, as it does for most of us, I repeat to myself "Not helpful" .... this is my mantra against these thoughts. I heard this from Randy Paush's wife....this is what she says to herself when the worries about raising her 3 kids alone enter her mind....
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: Eileen
Date Posted: Jan 05 2009 at 1:33pm
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Kathy thanks for the concrete examples from your family. That really does help ward off some of the nerves when all you seem to read is of the reoccurances of TNBC. I really do appreciate see survivors listed in black and white. Thanks again. 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: thinkpositive
Date Posted: Jan 05 2009 at 2:48pm
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Breastless, I can appreciate where you are coming from. My tumor grew very quickly once I found it. We tried chemo to shrink it and it continued to grow and I decided to move ahead with a double mastectomy. I have not regretted it one time !!! I had my surgery (a tram) in July of 06 and feel somewhat normal now except for the feeling in my breasts. I would absolutely encourage you and everyone in our situation to push for follow up. I did have a recurrence in my lungs which was only identified early because my onc did a follow up xray and then scans when spots showed up on the xray. You have to be your own advocate. If your body tells you something doesn't feel right insist on the necessary tests. I had no symptoms of the metastasis in my lungs - I am grateful that my dr. did the follow up. Hopefully you are DONE and will not have any recurrence but better to be safe. Hugs and prayers !!! ------------- dx 3/06 stg II 0/7 lymph bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08 Brca neg Avastin Xeloda 10/08 Curagen 2/09 Ixempra 6/09 Lung Mets Gemzar/ Carboplatin 9/09 |
Posted By: singlemom71
Date Posted: Jan 08 2009 at 1:51pm
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Hi all, I want to introduce myself as I am new to this site today and have been reading and crying through some of the posts...My name is Simone, I just turned 38 a few days ago, I live in Arizona, have an 8 year old daughter, am a single mom, and I was diagnosed with TNBC July 2008. I had a lumpectomy; I then opted for a bi-lateral mastectomy after learning that I carry the BRCA gene. My breast surgeon wanted me to be gene tested because of my age and because my mother had it at 41. She is still living and has been in remission for 25 years. The BRCA gene also puts me at risk for ovarian cancer - the undetectable...so I'll be having my ovaries removed this year - I already have a preview of menopausal hot flashes/night sweats because of the chemo right now! I completed 4 of the AC and have 2/4 Taxotere treatments left. I am currently undergoing breast reconstruction as well - my expanders are filled bi-weekly by a plastic surgeon and when I reach my size I'll be going through another surgery to get the actual implants. I can empathize with all of you women who had lymph nodes removed (I had 23 with one positive)who've lost feeling in their arm and get this tightness around the underarm chest area. It is strange and it immediately makes me think of lymphedema. The chemo is rough, you know good and bad days; I've lost all of my hair and some eyelashes and eyebrows but I never have to shave my legs! My daughter is very supportive and that allows me to focus on getting well and living life. I am thankful that I am doing everything I can to try and beat this thing, educating myself and speaking with other strong women. I am strong in mind and body and I want to be there for everyone going through this.
Take care |
Posted By: krisa
Date Posted: Jan 08 2009 at 2:00pm
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this disease does make us find out how strong we are! we are strong--don't mess with us! did your doctor send you to a PT who is licensed in manual lymph drainage?, and can help you with exercises to strengthen your arm, shoulder, etc. plus exercises that help with lymph drainage.  |
Posted By: trip2
Date Posted: Jan 08 2009 at 6:02pm
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Hi Simone,
What a wonderful story about your mother!
We are so glad you have joined up with us and it looks like you are almost thru with your chemo, I certainly understand the good and bad, we all do but you sound like you will get thru it just fine.
Best wishes to you and I hope you'll feel free to just jump in, someone is always around.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: singlemom71
Date Posted: Jan 12 2009 at 2:09pm
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Hi there, through my insurance at UHC in Arizona, they could not provide a visiting nurse to me so I drained them myself. It wasn't so bad. I guess the loss of feeling is typical? I work out regularly and would be interested in some exercises for this particular problem.
thanks !
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Posted By: singlemom71
Date Posted: Jan 12 2009 at 2:09pm
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Thanks for the warm welcome. Tell me, how does everyone get their information on the bottom of the posts?
thanks
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Posted By: Suzanne
Date Posted: Jan 12 2009 at 7:42pm
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In order to add information at the bottom of your post, click on "Settings" at the top of the screen. Then click "Edit profile". You then can add any information you want in the box to the right of the word "Signature". Below that, choose "Yes" where it says "Always attach my signature to posts". That should do it.
Good luck! ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: Suzanne
Date Posted: Jan 12 2009 at 7:55pm
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Karen, I also have a teacher friend who had TNBC and just passed the five year mark without recurrence. I had encouraged her to post on the website, but I don't think she ever did. It seems that women with current problems post while those who are a numbers of years out without recurrence/mets tend to move on. Maybe this kind of skews one's picture of triple negatives.
I just passed my second year anniversary and am still nervous and worried. I figure I'll feel better after year five.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: ssabouri
Date 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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Posted By: Breastless
Date Posted: Jan 13 2009 at 2:45pm
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 ------------- 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 |
Posted By: kirby
Date 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. ------------- kirby dx Feb. 2001. Age 44 Lumpectomy 2cm. no nodes stage 1 grade 3 4 rnds AC, 35 rads |
Posted By: Nancy
Date 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
------------- 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: Kathleen
Date 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. ------------- 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: vickyann
Date 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 |
Posted By: mommy2bigblueye
Date 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 |
Posted By: krisa
Date 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. |
Posted By: sydonashae
Date 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 |
Posted By: ssabouri
Date 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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Posted By: ssabouri
Date 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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Posted By: sharon in Mich
Date 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 |
Posted By: Nancy
Date 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 ------------- 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: Nancy
Date 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 ------------- 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: becca
Date 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 ------------- 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 |
Posted By: salvageprincess
Date 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 |
Posted By: Nancy
Date 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 ------------- 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: sibu
Date 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. ------------- 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 |
Posted By: krisa
Date Posted: Jan 15 2009 at 4:35pm
| 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! |
Posted By: vickyann
Date 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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Posted By: Suzanne
Date Posted: Jan 15 2009 at 8:20pm
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Hi, Breastless,
This has been said before, but I think that it deserves being repeated, "Life eventually will become easier." When I first found out that I had cancer, I wondered if I would be alive in three months. I would be awake, crying in the middle of the night, wondering how this could have happened to me. We all tend to imagine the worst, and that's easy to do when the doctors don't know before surgery if nodes are positive and if the cancer has spread. I kept thinking that I could be in terrible shape and maybe the doctors weren't telling me just to be kind. Then on to treatment. Chemo isn't easy, but at least one has the satisfaction of knowing something is being done to improve the situation. Compared to chemo., radiation is ridiculously easy. After that, worries tend to set in again. One joins the "Watch for symptoms" program. Every ache and pain could mean the cancer has returned. Over time, however, the cancer worries and thoughts move further to the back of one's brain. Sometimes a day goes by and I don't think about cancer at all.
As you move along your recovery road, we're all here to root you on. My journey is different from yours, but we all have a basic understanding of what you are going through.
Take care.
Suzanne
------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: trip2
Date Posted: Jan 16 2009 at 5:42am
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Hi Melissa,
I can tell by your post that you will be just fine and believe me you are not insane with any of your thoughts, we all have them.
Keep us posted on what's going on and how you are doing. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jan 16 2009 at 5:50am
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Hi Susan, Congrats on finishing your chemo. That is a milestone that is history now, good for you. I understand your feeling your time sleeping and crying was wasteful but look at it as a time for your body to heal and recover. Unfortunately alot of us go thru this so don't be hard on yourself.
Things will get better for you now, let us know how you are doing.
This is definitely a scary thing to have happen but you'll be fine. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: stephanie90027
Date Posted: Jan 16 2009 at 3:03pm
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Hi Breastless...
I am 43, mother of a 6 year old, and dx with TN on 9/11/08. I had 2 pos nodes. My onc and surgeon (after seeing clean scans) decided that aggressive chemo before BDM would be best for me. I've finished 4 rounds of AC and 7 of 12 Taxols and 6 more Carbo Platins. My onc says that carbo is not standard treatment for early stage (i was stage 2) bc, but studies out of other countries are showing that adding carbo is very helpful in preventing recurrence. You may want to talk with your onc about that as it sounds like you're like me and being as AGGRESSIVE as possible in your tx. I too freaked out when i began to understand what TN is vs. the "other" bc's. I couldn't get out of bed, couldn't stop crying, was consumed by fear and worse, by a feeling of sadness and loss that ran deeper than i thought possible. I then spoke with my onc - who really put it in perspective. She said "TN now has a name,,.but its the same "young woman" cancer that has been around forever. TN responds very well to chemo and you'll beat it and it won't come back." She was so sure, so calm, it made me feel much better. Of course i know it could come back, but i feel that nutrition and lifestyle changes can dramatically impact the odds. And even tho i'm still in a VERY long course of chemo (started on 9/30/08 and will end 3/10/09) followed by BDM and recon, THEN radiation, i feel very positive. I feel that i will survive and have a long, blessed life that will be more meaningful in a way having been through this. I understand the meltdowns. I understand the blinding fear. I still get it too (ativan helps). But even now, in the middle of treatment and very bald, i just know i'll be fine and see my daughter grow up. I love all these amazing women that are here to help us newbies manage this life-changing event. But this will pass and you will continue to live and thrive. PS: On the diet - all i've read is a very high fiber (30 to 35 grams a day) and extremely low fat diet is the best to avoid recurrence. I'm going macrobiotic personally - no meat, lots of fresh veggies and fruit, whole grains. I will miss choc chip cookies the most - but a small price to pay! ------------- 43 yrs old. DX 9/08 IDC stage 2, 2 nodes, braca+. Lumpectomy with clean margins, clean scans. Chemo = 4AC's, 12 Taxols and 12 carbo platins followed in April with DBM and recon then rads. |
Posted By: sticks04
Date Posted: Jan 16 2009 at 4:21pm
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Thank you for posting that....I needed to hear that there are people out there that do survive longterm with TNBC. I first visited this site when I was diagnosed in 11/07 and could not bring myself to return after reading some of the blogs and information on the site. I was too distraught to hear about this disease. I am hopefull that I too will be a longterm survivor like you! DX 11/07 Stage I - T1C, N0, M0, Lumpectomy, 8 TX of dose dense chemo (4 Cycles of AC, 4 of Taxol), 33 TX or radiation.
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Posted By: Eileen
Date Posted: Jan 17 2009 at 3:50am
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stcks04:
you have about the same stats as I do with the same treatment. you are about 6 months ahead of me. this is great with this site you can actually talk to people that understand our fears and what tn's go thru. It means alot to hear you are still well. keep me posted. Have you had any other scans done since you treatment ended. 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: prissy
Date Posted: Jan 17 2009 at 1:32pm
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I am 51 and afraid of reoccurance also. I had neo-adjuvant chemo , then the dbl mast in June of 08. Other than polymyalgia rheumatica--pain and stiffness in back of head and shoulders-- and some tingling, numbness in my hands--I guess I am doing pretty good.
Still stressed, still suffer from fear and lack of confidence--which I never had before bc. Plan to have reconstruction this summer. I teach public school and don't need to miss. I still am fatigued often, depressed often, but I take it one day at a time and try to remain positive.]
I just read that one woman's doc told her she had a possibility of 40% reocurrance rate! Damn, that doesn't sound good.
Do any of you know if they know if reocurrance rates differ if you are caucasion or African-American? I doubt they know. I have no family history. Just lucky I guess.
Also, do any of you have trouble with handwriting for long periods of time?
My hand cramps up and my handwriting looks like chicken-scrawling!
Prayers to you all,
Prissy ------------- PRISSY 53 y/o cauc dx10/07 no nodes GR3 St IIb CT+4,ADRYx4 ClinTrial Avas#NCT00203503 Remarried 7/11 LAST CHEM 5/08 DBL/MAS 6/08 2/09 TIA 55%BLOCK LCAROTID.Divorced 7/30/10.No reconst yet |
Posted By: thinkpositive
Date Posted: Jan 17 2009 at 1:58pm
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Prissy, I hope you will gain confidence about your ability to fight this disease. I am older than you and am on my third year of survival. We can beat this even if we have to endure chemo treatments to hold off the recurrences. Hang in there and enjoy every day. You can be an inspiration as a teacher who is stronger than cancer ! ------------- dx 3/06 stg II 0/7 lymph bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08 Brca neg Avastin Xeloda 10/08 Curagen 2/09 Ixempra 6/09 Lung Mets Gemzar/ Carboplatin 9/09 |
Posted By: krisa
Date Posted: Jan 17 2009 at 2:07pm
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prissy, i don't think there is a difference in survival/recurrence in regard to race. my oncologist said if i had chemo, my chance of survival went up to 77%..i was stage 2, grade 3, 2.2cm tumor, no lymph node involvement. we all have our good days and our bad days! it helps to remember that none of us are alone in those feelings. |
Posted By: prissy
Date Posted: Jan 17 2009 at 2:14pm
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Did you have Rads? I put that off because I was told it would make reconstruction more difficult for me this summer. My docs didn't act like it made any difference when or if I had radiation. Then I read that if you did not have the rads during a certain amount of time, then there was no benefit to having them after my reconstruction.
I am really confused about that, too.
Thanks for encouragement!
prissy ------------- PRISSY 53 y/o cauc dx10/07 no nodes GR3 St IIb CT+4,ADRYx4 ClinTrial Avas#NCT00203503 Remarried 7/11 LAST CHEM 5/08 DBL/MAS 6/08 2/09 TIA 55%BLOCK LCAROTID.Divorced 7/30/10.No reconst yet |
Posted By: krisa
Date Posted: Jan 17 2009 at 2:21pm
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yes, i had rads. i read that report about the time factor...i think it is faulty and didnt' follow the logic of it. did the report say that we MUST have radiation 20 weeks after diagnosis and if we don't the outcome is not as good? how did they determine this equation? |
Posted By: sibu
Date Posted: Jan 17 2009 at 2:43pm
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Hi Prissy, My thoughts and prayers are with you. The long-term side effects can really drag out. Like running a marathon. Long after all the well-wishers are gone and the hair grows back in, we are left to deal with these issues. Just wanted to be clear that my onc. gave me a 40% recurrence rate, based on several factors including positive nodes, positive BRCA status, age, grade, and even close family history (siblings). I'm guessing this puts me in the higher range amongst all TNs. Sorry, didn't mean to freak people out with that. ------------- 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 |
Posted By: Suzanne
Date Posted: Jan 17 2009 at 3:20pm
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Hey, Prissy, I'm a teacher, too, and have noticed a handwriting change for the worse. I used to have great printing, but now it is really wiggly. My hand feels as though it kind of cramps up. I don't know if it is due to the chemo. or just a sign of getting older.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: prissy
Date Posted: Jan 17 2009 at 4:08pm
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I will ask at my next appt. about the 20 week window to get rads and let u know!
I am trying to hang in there. I am going thru a "non-traditional" teaching licensing program and have taken the PLT twice and haven't been able to finish it because of my handwriting. I may ask for some kind of accomodation to give me more time, and a break.
I am getting so discouraged with the whole public school licensing crap in Arkan sas. After all my degrees, experience . .it comes down to me passing a standardized, timed test on theory.
I am not giving up--I have to have the insurance. But the stress is really getting to me. I want to curl up and stay in bed. Teaching in public school, high school especially is SO HARD. Of course, I was diagnosed 6 weeks after I started teaching in 07. Speech and Drama---where you need the most energy and enthusiasm. Mostly I just come home and crash.
Thanks Always,
prissy ------------- PRISSY 53 y/o cauc dx10/07 no nodes GR3 St IIb CT+4,ADRYx4 ClinTrial Avas#NCT00203503 Remarried 7/11 LAST CHEM 5/08 DBL/MAS 6/08 2/09 TIA 55%BLOCK LCAROTID.Divorced 7/30/10.No reconst yet |
Posted By: mommy2bigblueye
Date Posted: Jan 17 2009 at 4:13pm
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Hi Ladies,
So I can't say enough how much reading all the posts on this site means to me. It is so comforting to feel that people understand what I am feeling and thinking even though I get tired of expressing the same things sometimes to my friends and family. I am blessed to have an amazing support system, but try as they might it;s hard for them to truly understand sometimes. It's nice to know I am not alone. On a happy note...my sentinal node biopsy was Friday...on my son's 1st birthday and I walked into the operating room exactly one hour before I gave birth to my son last year (also in an operating room via c-sect). It was a very eerie and disconcerting feeling...but the prelim results are in and they say my lymph nodes are clear. I may have missed spending my son's bday but I got to bring him home the best present...and for the 1st time I really believe that I could be okay through all this...and I am going to enjoy this moment, this feeling as long as it lasts, I wish all u wonderful ladies the same moment of peace I am experiencing right now and wanted to share with you. Melissa ------------- Dx 12/9/08, IDC, bilateral mastectomy and lat flap reconstruction 2/9, Stage IIa Grade 3, 2.4cm, No nodes Finished Chemo 7/23- 4xAC , 12xTaxol plus Avastin; BRCA1+, OOPH 11/09 |
Posted By: elizabeth
Date Posted: Jan 18 2009 at 6:50pm
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Hi Melissa,
What wonderful news!
Like you, I also found a lump shortly after I stopped nursing my youngest child. It was so hard to get my head around the diagnosis at first and devastating to feel my life was in jeopardy at age 39 with young children to care for. My heart goes out to you.
I don't know if others felt the same way or not, but I think having young kids made it so much easier for me emotionally to find the strength to pursue the most aggressive treatments for their sake. Even when I was exhausted from chemo, the pure love of my toddler's hugs kept my spirits high.
I'm almost 2 years out from diagnosis now, and so far, so good!
Best wishes,
Elizabeth ------------- lumpectomy 4/07; 1.8cm TNBC stage 1c grade 3; chemo: AC, Abraxane, Avastin; rads 9/07; bilat mastectomies 9/08; oophorectomy 1/09. |
Posted By: pwcassidy
Date Posted: Jan 19 2009 at 5:28am
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Hi, I am new here and have just been diagnosed with mets to other lymph nodes (left side, cancer had been on my right side) and 5 spots in my bones. just starting out on this path. chemo starts this week with carboplatin and avastin. how is everyone else doing? |
Posted By: mommy2bigblueye
Date Posted: Jan 19 2009 at 8:21pm
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Elizabeth,
it is so true. having my kids and being that they are so young still has been a blessing in some ways. My kids need me so much there is little time to sit and dwell on the fears I know are there. They force me to stay focused on trying to remain positive and doing whatever I need to to make sure I beat this. My daughter keeps asking to kiss my boo-boo everytime I come home from the dr...you can't beat that!!! That being said, preparing for this surgery...worrying about the kids has been the hardest part. I am having BDM and lat flap reconst. The recovery is supposed to be very intense. At the least there is no lifting at all 6 wks...my youngest still is not sleeping thru the night so I will be having help pretty much 24/7...simply put, i am trying to learn to be okay with this. melissa ------------- Dx 12/9/08, IDC, bilateral mastectomy and lat flap reconstruction 2/9, Stage IIa Grade 3, 2.4cm, No nodes Finished Chemo 7/23- 4xAC , 12xTaxol plus Avastin; BRCA1+, OOPH 11/09 |
Posted By: Terri
Date Posted: Jan 20 2009 at 12:45pm
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Hi pwcassidy,
Welcome and so sorry that you had to join us with your diagnoses. You might want to post in the recurrence/mets area of the site also. There are many women here in your position who can give you much love and advice during your journey. There are also alot of tips about chemo, questions to ask your doctors, etc in the resources area. Is this your first time going through chemo? I wasn`t sure since you said the breast cancer had been on the other side. I finished treatment in late April and am still recuperating and trying to get my energy back. I have had a few setbacks such as getting shingles but always moving forward! I am lucky enough to be able to work part time and my employer has worked with me through treatment until now. Working a little through chemo & radiation helped me feel a little more "normal" but everyone is different. You have to put yourself first right now and rest when you need to. Surrounding yourself with caring positive people also helps alot. Feel free to tell us more about yourself and I`m sure others will join you. 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: pwcassidy
Date Posted: Jan 20 2009 at 1:54pm
| I'll check out that section, thanks. I had chemo last year from feb 6th through may 15th. I did 4 doses of AC and 4 doses of taxol, every other week for 8 weeks, then i had a mastectomy, then radiation. This chemo will be different, but I handled the last chemo pretty good after the first session. |
Posted By: krisa
Date Posted: Jan 20 2009 at 2:12pm
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I had my first chemo the end of Jan 08 (4 AC and 4 Taxol) and finished radiation in August 08.
How did you discover bone mets? and lymph node mets?
I will send some special thoughts and prayers your way.
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Posted By: pwcassidy
Date Posted: Jan 21 2009 at 2:24am
| i went for my mammogram on the left side, cancer had been on the right side. I went by myself and was a little like "oh my first mammo since cancer". I figured that someday they would find something but never thought the very first time. well even i could see my lymph nodes were larger because i had bought scans from previous years with me as i am now at the breast center for mammos a different place than other years. the lady taking the scans said well it's a different kind of machine, wait here while the dr looks. well my heart sank when she came back and said he was concerned about the the size of the lymph nodes and wanted an ultrasound right away. it was more a deja vu feeling i was still optimistic because lymphodema had kicked in earlier in the month and i had a bad cold. in that first ultrasound the radiologist came in and thought he found a spot. and i was rooting for a new cancer. when i went back for the biopsy they could not find the spot and biopsied the lymph nodes and they came back positive for cancer on dec. 17th, my mom's birthday. My oncologist then sent me for pt/ct, bone scan and mri between christmas and new years. i got the results Jan 5th 364 days since my last positive diagnosis. it shows lymph node involvement and 5 spots in my bones. I am having a hard time understanding that, i think it shows the cancer there but no stuctural damage to the bones. it shows up only on the pet scan not the bone scan or the ct scan. The port was put in last friday and i am suppose to start chemo this week i am just waiting for them to call and tell me when to come. |
Posted By: janinvan
Date Posted: Jan 21 2009 at 1:20pm
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You'll be fine! Get physio for chest issues....insist on CT scans of the masectomy site every ? couple of years or sooner? (also Pet scan)
I had a recurrence of cells around the pectoral muscle of my right side masectomy area (looked like lymphodema)....11 1/2 years after the first diagnosis/masectomy/chemo/radiation
The diagnosis was made when my tumor marker(blood) jumped from 35 to 45 (it had been climbing 1-2 points each year)...and the swelling got firmer/larger. Then I had an ultrasound/ core biopsy/CT scan... JANICE
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