1st timer " triple negative" feelings of loss
Comments
-
Welcome!
Hi! I also just joined this site - I found it the same way. I too, found that I had TNBC last summer (2011). I had heard a boat load of scary things about it. Now that I'm done with my active treatment, I'm feeling a bit more positive. I hadn't heard of too many other people with TN until I got on this site - so it probably will help you see you're not alone. Bless all those that are so willing to share their stories - it's comforting to know we're together in our journey.
I hope you're helped as much as I've been so far.
Karen0 -
Don't believe everything you read.
I was diagnosed with TNBC in Nov. 2009. I too was frightened by what I read online but after mastectomy/chemo/& radiation, so far I have no further signs of cancer. In some ways we are more fortunate because after the chemo and rads we are finished with treatments. We don't have to take those hormone suppressors that have side effects of their own. (Not meaning to offend any of our hormone positive pink sisters because I believe I had it easier than they did). I'm sorry for your family history with cancer but we are all different and hopefully that even applies within family? Most likely that "what if" will always be in the back of your mind but you can choose not to let it control you to some extent. We are always here for you and for each other!
HUGS!!!
Jamie0 -
Thank you for your repliesjamiegww said:Don't believe everything you read.
I was diagnosed with TNBC in Nov. 2009. I too was frightened by what I read online but after mastectomy/chemo/& radiation, so far I have no further signs of cancer. In some ways we are more fortunate because after the chemo and rads we are finished with treatments. We don't have to take those hormone suppressors that have side effects of their own. (Not meaning to offend any of our hormone positive pink sisters because I believe I had it easier than they did). I'm sorry for your family history with cancer but we are all different and hopefully that even applies within family? Most likely that "what if" will always be in the back of your mind but you can choose not to let it control you to some extent. We are always here for you and for each other!
HUGS!!!
Jamie
Your right those what if's take a huge toll on ones life. I have to ask though, I have read quite a few threads where a lot of women with tnbc have not only gotten surgery and chemo but also radiation, is that a common treatment for this tnbc or is it something that only a doctor can decide? I so appreciate having such a site where one can connect with others who have been there. God bless.0 -
You are not a statistic
And reading the stats can be scary. I can read them without getting worried but many cannot. I had TNBC stage 2 about a year ago. I am doing fairly well and pretty much back to my pre-cancer life. I have developed lympedema and anyone who has lymphnodes out can develop this no mater what kind of cancer they have. Even with development of lymphedema I still have a lot of hope.
Do you have high blood pressure? I did, and it was under control but not so much so that it was the same as several years prior. There is a Beta blocker called Propranalol. Beta blockers are the older blood pressure control medications. Any way while researching TNBC I found several studies that indicated that Propranalol had been found to inhibit metatasizing of TNBC. So if your blood pressure is not under control it would be worth mentioning to your oncologist.0 -
hopeful in knowing your well beinglaughs_a_lot said:You are not a statistic
And reading the stats can be scary. I can read them without getting worried but many cannot. I had TNBC stage 2 about a year ago. I am doing fairly well and pretty much back to my pre-cancer life. I have developed lympedema and anyone who has lymphnodes out can develop this no mater what kind of cancer they have. Even with development of lymphedema I still have a lot of hope.
Do you have high blood pressure? I did, and it was under control but not so much so that it was the same as several years prior. There is a Beta blocker called Propranalol. Beta blockers are the older blood pressure control medications. Any way while researching TNBC I found several studies that indicated that Propranalol had been found to inhibit metatasizing of TNBC. So if your blood pressure is not under control it would be worth mentioning to your oncologist.
No, I have not developed lymphadema, and I'm sorry others have to deal with it. I think what worries me most is this chronic pain syndrome i"ve been dealing with, it worries me because god forbid something does go wrong i'm not sure I would know. Bone pain has always been a problem and it scares me that I may keep contributing all to it and not know the difference as to a recurrence. But neuropathy now thats one that keeps me up at nite, waving my arm in the air like some lunatic hoping it help and knowing it doesn't. Sometimes I wake up in so much pain and don't know if I wanna laugh or scream in which most cases I do both. I'm sorry to sound like a pathetic child but it helps me cope and I am finally finding some comfort in all of this.
God bless all that are out there searching for a norm.0 -
TN alsogloworm313 said:hopeful in knowing your well being
No, I have not developed lymphadema, and I'm sorry others have to deal with it. I think what worries me most is this chronic pain syndrome i"ve been dealing with, it worries me because god forbid something does go wrong i'm not sure I would know. Bone pain has always been a problem and it scares me that I may keep contributing all to it and not know the difference as to a recurrence. But neuropathy now thats one that keeps me up at nite, waving my arm in the air like some lunatic hoping it help and knowing it doesn't. Sometimes I wake up in so much pain and don't know if I wanna laugh or scream in which most cases I do both. I'm sorry to sound like a pathetic child but it helps me cope and I am finally finding some comfort in all of this.
God bless all that are out there searching for a norm.
Again, don't believe everything you read. I was diagnosed the tail end of July 2010 and at my oncologist appointment last week was told I'm doing great with no signs of recurrance. Nuerapathy (sp) in my feet, some muscle and nerve issues from reconstruction and lymphedema are things that I can live with. When I get whiny I kick myself and say at "You have nothing to complain about--you're here".
Thanks to all the pink sisters who provide infomation, sympathy, and prayers...0 -
Neuropathy...midnight10 said:TN also
Again, don't believe everything you read. I was diagnosed the tail end of July 2010 and at my oncologist appointment last week was told I'm doing great with no signs of recurrance. Nuerapathy (sp) in my feet, some muscle and nerve issues from reconstruction and lymphedema are things that I can live with. When I get whiny I kick myself and say at "You have nothing to complain about--you're here".
Thanks to all the pink sisters who provide infomation, sympathy, and prayers...
You shouldn't be in so much pain from neuropathy as there is excellent medication for it.....I've been on Gabapentin for ages...speak to your doctor about getting on this...it changed my life...
Wishing you the best...
Hugs, Nancy0 -
It's ok to screamgloworm313 said:hopeful in knowing your well being
No, I have not developed lymphadema, and I'm sorry others have to deal with it. I think what worries me most is this chronic pain syndrome i"ve been dealing with, it worries me because god forbid something does go wrong i'm not sure I would know. Bone pain has always been a problem and it scares me that I may keep contributing all to it and not know the difference as to a recurrence. But neuropathy now thats one that keeps me up at nite, waving my arm in the air like some lunatic hoping it help and knowing it doesn't. Sometimes I wake up in so much pain and don't know if I wanna laugh or scream in which most cases I do both. I'm sorry to sound like a pathetic child but it helps me cope and I am finally finding some comfort in all of this.
God bless all that are out there searching for a norm.
Hey, this is a new experience for you and it's ok to whine and complain to someone. We're all listening and been there to some degree. We just want someone to listen right?! As to the radition - surgery, chemo and radiation is what was recommended to me by my surgeon and oncologist and I believe in them. One thing I remember reading is "don't compare your cancer and treatment to anyone else" - it's your own experience that matters. The neuropathy is also individual - some have it bad, some have it not so bad or not at all. All I know is that I have it. Burning cold in my feet and hands and pain in my hands - particularly, my right hand. I dropped a coffee pot a couple of weeks ago. Luckily, I didn't get burned. I've been going to an Occupational therapist for treatment - she's given me exercises for my hands and core exercises to strengthen my core so I'm stable on my feet. She's also a 26 year survivor of BC and an inspiration. I just started Gabapentin - my sleep has improved dramatically and the pain has lessened already. I highly recommend it.
Take care of yourself - wave your hands around all you want, scream yell and cry. It actually helps you to let it out!
I hope you feel better soon! Let your oncologist know what you're feeling.
Hugs!
Karen0 -
Me & TNBC
I was diagnosed with TNBC in 12/2009; Stage IIa, Grade 3. I had a right mastectomy with a tissue expander inserted in 2/2010. Next came a port and then 16 rounds of chemo - 4 rounds of A/C and 12 rounds of Taxotere. No radiation. I had my implant exchange surgery in 6/2011 and revision-reconstruction surgery in 12/2011. I am in remission and currently doing pretty well if I do say so myself. There are a number of women on this site who have TNBC who I am sure will respond to your post. We have a wealth of knowledge we can share. It is always good to be able to communicate with someone who has been there and done that. You have come to the right place. There is always hope until you are told there is none left.
I had an atypical presentation of breast cancer. No cancer was EVER found in my breast tissue. I did, however, have grossly enlarged right axillary lymph nodes. I had to have a Tissue of Origin test run before the pathologist(s) was able to determine that I had breast cancer as opposed to some other type of cancer. Further testing on the tissue sample showed that it was triple negative. I almost was diagnosed as Cancer with an Unknown Primary (CUP). Since there was no tumor to irradiate, radiation therapy was not on the menu for me - just the axillary dissection, mastectomy and lots of chemo. It is my understanding that TNBC responds well to chemo. Once we hit the magic 5 year mark then I believe that our chances of a recurrence are the same as that of any other person with breast cancer. I am banking on that. My last chemo infusion was in Aug. 2010 so I have quite some time to go. I really do not dwell on the chances of recurrence. My husband and I have 2 children in college who, believe it or not, still need me - or at least my sage advice and checkbook. TODAY I have no evidence of disease. That is what counts.
IRENE0 -
Thank you all for all thejessiesmom1 said:Me & TNBC
I was diagnosed with TNBC in 12/2009; Stage IIa, Grade 3. I had a right mastectomy with a tissue expander inserted in 2/2010. Next came a port and then 16 rounds of chemo - 4 rounds of A/C and 12 rounds of Taxotere. No radiation. I had my implant exchange surgery in 6/2011 and revision-reconstruction surgery in 12/2011. I am in remission and currently doing pretty well if I do say so myself. There are a number of women on this site who have TNBC who I am sure will respond to your post. We have a wealth of knowledge we can share. It is always good to be able to communicate with someone who has been there and done that. You have come to the right place. There is always hope until you are told there is none left.
I had an atypical presentation of breast cancer. No cancer was EVER found in my breast tissue. I did, however, have grossly enlarged right axillary lymph nodes. I had to have a Tissue of Origin test run before the pathologist(s) was able to determine that I had breast cancer as opposed to some other type of cancer. Further testing on the tissue sample showed that it was triple negative. I almost was diagnosed as Cancer with an Unknown Primary (CUP). Since there was no tumor to irradiate, radiation therapy was not on the menu for me - just the axillary dissection, mastectomy and lots of chemo. It is my understanding that TNBC responds well to chemo. Once we hit the magic 5 year mark then I believe that our chances of a recurrence are the same as that of any other person with breast cancer. I am banking on that. My last chemo infusion was in Aug. 2010 so I have quite some time to go. I really do not dwell on the chances of recurrence. My husband and I have 2 children in college who, believe it or not, still need me - or at least my sage advice and checkbook. TODAY I have no evidence of disease. That is what counts.
IRENE
Thank you all for all the advice and info, so greatly appreciated. This is all a blessing for me and pretty sure to all having to deal with any cancers. As for the burning pain from neuropathy, I did speak to my gp today and was put on gabepantin which she as well said would help. I have read and taken to heart all the advice given, thank u all
blessings to all
glow0 -
thanksJoAnn4818 said:Welcome
Hi Glow,
I just want to know I'll be thinking of you and I hope the pain eases soon. I have tnbc and I'm one year out from all treatments and I do feel better. I'll say in my case it seemed to take a long time too.
Hugs,
joAnn
thanks Joann, wishing u continued health and many years of greatness.
hugs back at u
glow0 -
I hope you can get reliefMAJW said:Neuropathy...
You shouldn't be in so much pain from neuropathy as there is excellent medication for it.....I've been on Gabapentin for ages...speak to your doctor about getting on this...it changed my life...
Wishing you the best...
Hugs, Nancy
I hope you can get relief from your pain. Prayers and hugs!
Diane0 -
Thank you Diane, and thanksDianeBC said:I hope you can get relief
I hope you can get relief from your pain. Prayers and hugs!
Diane
Thank you Diane, and thanks to all who have taken the time to help me feel a little less anxious.0 -
Gabapentin
I too have TNBC. I have a question for all you gals on Gabapentin (Neurontin). I have an RX for it and actually have the pills, but the warning paper that came with it said it can cause depression and suicidal thoughts. Can anyone speak to that? I haven't started taking it because I am scared.0 -
Gabapentin....linpsu said:Gabapentin
I too have TNBC. I have a question for all you gals on Gabapentin (Neurontin). I have an RX for it and actually have the pills, but the warning paper that came with it said it can cause depression and suicidal thoughts. Can anyone speak to that? I haven't started taking it because I am scared.
Oh please don't hesitate to take the Gabapentin!!!!! I've been on it for six months.....it truly changed my life! If you read the side effects of the common aspirin you'd probably not want to take it ! I had severe neuropathy in my breasts...due to my second go round of radiation to my clavicle area....they had to radiate one part of my breast ( very top) for the first 10 of 25 rads treatments....I was warned about possible nerve damage to that area and I got it! The neuropathy there felt like someone had poured gasoline on me then set me on fire! I actually cried with it several times....then was put on Gabapentin.....I take 2 300mg in the AM... And 3 300mg at bedtime......again I can't tell you how it changed my life...I am Stage IV with TNBC...Undergoing chemo again and had 10 radiation treatments to my brain 8 weeks ago.... so to be pain free from neuropathy is a blessing!
Please don't be afraid of the Gabapentin......it can help you sooooo much! Keep us posted
Hugs, Nancy0 -
There is always hope,gloworm313 said:Thank you all for all the
Thank you all for all the advice and info, so greatly appreciated. This is all a blessing for me and pretty sure to all having to deal with any cancers. As for the burning pain from neuropathy, I did speak to my gp today and was put on gabepantin which she as well said would help. I have read and taken to heart all the advice given, thank u all
blessings to all
glow
There is always hope, always! I hope the gabepantin will take away the pain you're having.
Hugs, Leeza0 -
Thank you mam, now ifjnl said:There is always hope,
There is always hope, always! I hope the gabepantin will take away the pain you're having.
Hugs, Leeza
Thank you mam, now if anynone can tell me what pill will pull me out of this darkness within. This **** cancer did not just take my breast and my mind, but it brought back everything I've tried so hard to lock behind me. my head is spinning so fast I can't see straight I can't concentrate and **** it I'm losing myself so so so fast. What cancer and ptsd took from me I just can't handle, call me a whimp a damn pitiful human being or even someone not worthy of being listened to but I just "can't" handle this crap of a life right at this moment. just wish I can numb myself from this so called life and yes many may say "at least I have my life" but **** it its not a worthy life if all I feel is the darkness within I am so angry!!!!!!
I'm so sorry0 -
No reason to say you'regloworm313 said:Thank you mam, now if
Thank you mam, now if anynone can tell me what pill will pull me out of this darkness within. This **** cancer did not just take my breast and my mind, but it brought back everything I've tried so hard to lock behind me. my head is spinning so fast I can't see straight I can't concentrate and **** it I'm losing myself so so so fast. What cancer and ptsd took from me I just can't handle, call me a whimp a damn pitiful human being or even someone not worthy of being listened to but I just "can't" handle this crap of a life right at this moment. just wish I can numb myself from this so called life and yes many may say "at least I have my life" but **** it its not a worthy life if all I feel is the darkness within I am so angry!!!!!!
I'm so sorry
No reason to say you're sorry. You are going through a very tough time. Please talk to your doctor about this and I am sure he can help you with some meds. I know this fight is tough, but, you need to keep fighting as life is worth it. It is!
Big hugs and prayers,
Lex0 -
For what it's worth, I too
For what it's worth, I too was triple neg. Her2/neu pos as well. It's now been over 11 years and I'm still here and still kicking. Keep your chin up and keep pushing forward. Love and care for yourself, as you would your best friend! Keep looking forward and keep loving and giving. You've come to a really good place for caring and compassion, sharing and understanding. You are not lost. You are scared and hurting. But you have reached out and here, you will find encouragement, support and inspiration to reassure that you are not alone! I found this place years ago, just like yourself, and it has remained a community where I found all those things and more and I know you will tool.
Sending warm hugs and hoping that you will begin to feel brighter really soon.
Love, light & laughter,
Ink0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.2K Cancer specific
- 2.8K Anal Cancer
- 440 Bladder Cancer
- 306 Bone Cancers
- 1.6K Brain Cancer
- 28.4K Breast Cancer
- 391 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 12.9K Head and Neck Cancer
- 6.3K Kidney Cancer
- 666 Leukemia
- 789 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 235 Multiple Myeloma
- 7.1K Ovarian Cancer
- 53 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.3K Prostate Cancer
- 1.2K Rare and Other Cancers
- 532 Sarcoma
- 717 Skin Cancer
- 647 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards