Calling all TNs
Comments
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The 5 Owens - Welcome to our family of loving sisters. Sorry you had to join us, but we are happy to help you in any way we can. I'm going to leave it to others with more technical understanding to answer why our TN is so much worse. This is a tough time to join us for another reason, 2 of our sisters recently died. But you need to remember there are a whole lot of us who have survived and have moved on to our new normal. Best wishes as you get your treatments lined up. Ask us anything, and there will be someone who can give you information based on her experiences.
KC Gal - Welcome to you too. Your treatment sounds like a winner for you. Numbness seems to be part of the side effects of surgery. My numbness has almost disappeared, but once in a while I'll find an area along the incision like that feels numb. No pain anymore. I had a modified radical mastectomy. But I know numbness is a frequent topic on this thread. Have you been offered lymphedema physical therapy? That just might help.
Cocker - I'm feeling your worry all the way across the ocean. And now you have to go back to your lodge and worry while away from home. My youngest daughter had a lump scare at the same time as my surgery. Did we ever feel devasted and the wait was the worst. Her lumps turned out to be nothing, and so will your daughter's. I'll keep you and Mandy close to me this week.
Way too much sadness here lately. Jan
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Hi ladies- you have been busy this week! We went to Omaha this weekend and took the kids to the zoo and visited with my cousin-in-law who is currently in treatment for BC.
Annie- we are holding your hand. I know you must be worried sick and nothing we can say will change that. Just know we are sending as much good energy your way as we can!
Welcome- Stephanie and kcgal.
Tazzy- glad you are feeling well enough to post!
OBXK- Thank you for sharing Blonde's story. I imagine she is so happy being reunited with her husband.
Hope60 and Inmate- where are you? Thinking of you both.
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Thanks so much for your support. I suspect we will talk often!! So glad I found you all!!
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Cocker, fingers crossed for your daughter - the waiting is the worst!
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Annie....can't imagine what you must be feeling but I think it is as the doc says, unlikely to be anything at all. Or just a cyst. So sorry you and your daughter are going through this.
We are all tough birds like this one!
Susan
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Yes inmate and Hope60 where are you?
Susan
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the 5 owens - YES THERE IS HOPE - I was diagnosed in April - surgery on 5/7, chemo started last week - Triple negative - - - I would (if I had to do over and knew "this much") ask if they can start chemo before surgery - to PROVE that the chemo shrinks what you have . . after removal of all breast tissue - the measure of recurrence is more subtle - -
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welcome to the new ladies...know you are scared but we are here...ok???
Cocker..when i read your post i felt sick...I'm scared with you ok? agree that maybe they can get Mandy in sooner...I bet YOU can do this for her...you (and Mandy) need to know right now what is going on...but I agree it is probably nothing but you need to know now....(can you tell I'm very impatient about this stuff)...I just don't like you or your daughter having to wait..the anxiety is so much worse....don't put yourself through it if you don't have too.
Went to the Bridgestone golf tournament in Akron today...."saw"Tiger Woods, saw Phil Mickleson walk by...I so wanted to say...Hey Phil..how is your wife and to let him know I was a 3 year survivor..but you are supposed to keep quiet on a golf course so I did...not easy for me
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5 Owens, TN is considered a more serious type of breast cancer than some others for several reasons. It's usually aggressive and fast-growing, and doesn't respond to known targeted therapies like Herceptin, Tamoxifen, etc. So it's often treated more aggressively right out of the gate, since this is your first, best chance to smack the unholy crap out of this beast. On the bright side, because TN is aggressive, it sucks up the chemo aggressively, too (heh, heh) and thus, usually responds very well to chemo. We do have higher rates of recurrence and they're more likely to come back sooner than hormone + and HER2+ tumors, and they're more likely to come back as metastases rather than a local recurrence. This is probably related to the fast-growing nature of our beasties. Years 2-3 post cancer is the peak time for worry, although by 5 years out, our rates of recurrence actually start to fall below those with hormone + and HER2+ tumors. I think of it as "since it grows fast, if it's going to pop back up, it will likely have done it by then", although, of course, with ANY breast cancer, there are no guarantees that we're ever safe from it coming back. I hope this hasn't frightened you too much. There are serious issues with TN, but there are some good things about it, too. Most reassuring to me was that it usually responds quite well to chemo.0
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Ladies thank you so much for your support especially when you have your own worries and problems to deal with. I have managed to get Mandy in a week earlier so its next Monday she see's the specialist but it still seems a long way away. I even began bargaining with God today, me for her, just as long as she is ok. Thank you all so much I feel so much better now that you are holding my hand. Bless you all. Annie
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The 5 Owens, i feel what you are going through, i am new to this as well,my 1st surgeon told me "You have triple negative,it needs to come out" and gave me a computer printout. I was terrified because i heard Triple neg. is the worst one to have. I panicked,thought about putting my affairs in order,decided to research and came upon this site. This site has educated me and brought me peace. We can survive this,btw, i dumped the surgeon and got a different one. Thinking about what if's can be terrifying,we are here for you.Also, i heard so much about the side effects of chemo,told mtself,don't anticipate the side effects,take it as it comes and see how it affects you,my family and i are surprised at how well i have tolerated it so far. Good Luck
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Hope 60 and inmate, hope you are doing well,i think about the ladies on this site often,you are helping me get through this. Annie,hope all goes well with your daughter,can only imagine your anxiety
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Thank all you ladies giving me hope at a much needed time!! I feel better after listening to you all!! I had a good day yesterday after I stopped googling stuff!! My husband actually took away my laptop and I'm glad he did!! Anyway thank u all!! I'm sure I'll be visiting often and asking plenty of questions as I find out more!
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The5Owens: Riley summed up the reasons for TN's scary status very well... and its receptivity to chemo is a good thing. I will add that there's a lot of research going on right now to find a targeted therapy for TN - and that's also a good thing, though we are all impatient to see clinical applications. You might want to check with your onc about clinical trials; it may benefit you... and the research results will certainly benefit those who follow. Also, there is a fair amount of evidence that a low-fat diet and regular exercise reduces the odds of recurrence quite substantially.. so that is our own little "therapy" we can do for ourselves. I think we have all experienced the initial terror you are feeling; once you have a plan in place and get going with treatment, you will feel better. There are thousands and thousands of women who have survived TN - a large majority do! (we all need to keep reminding ourselves of that.)
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Morning ladies. Hope all of you are doing well. I have not posted lately but have been reading all of the posts. Saddened by the loss of two sisters. That really hit me hard last week. But this week I am going to be strong and get thru my last AC treatment this Thursday. So far I have been handling them ok with minimal SEs. Hope taxol is the same. I have heard it is easier than AC but who knows. Anyway thinking of you all. Have a great Monday.
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Kcal - welcome to our group. It was great to hear that you had such an effective response to chemo. I don't know the reason for the numbness on the non-surgical side, but one of the other sisters on here did mention that she had facial numbness as a SE of Taxol.
FernMf - *sniffles and wipes tear*. Another newbie graduates to giving advice!! (feel like a proud Mom, everytime I see this happen)
5owens - sorry you're here but welcome and yes this is survivable.
First, hubby is right, stay away from the Internet unless you're sure they're reliable sites. Here's two for you.
www.tnbcfoundation.org
www.cbcf.org
My first tip for you is that when you go to your first planning appt. , bring a notebook buddy with you. This should be someone who both listens well and takes notes well. You will have an unbelievable amount of information given to you, which is hard to remember. The notes will help you remember.
Please ask any specific questions you have and we will do our best to help. Also, we often use abbreviations on here (for example MO =medical oncologist, BS = breast surgeon, RO = radiation oncologist) . so don't be afraid to ask what it means if you don't know.
Painting - great to see you!
Melissa - glad to hear the A/C part has gone well.0 -
Good Morning ladies,
Lots to respond to so I will break up my messages.
Fern....One down.
Lory.....so glad about the good liver scan. I too have a spot on my lung they are watching. So far so good. I'm sure yours will be just that, a spot.
Jazzy.......whew, you will be done with Taxol before you know it.
Cocker.....I don't ask my doc about percentages and the like. In my mind everything is a 50/50 chance. It will or won't happen and thinking about it just won't effect a change. Ignorantly blissful? Maybe. But I'm okay with that. Try not to dwell on a potential return.
Bak.....so sorry to hear about your sister's struggles. It is so true that we all have something traumatic to deal with. Just don't let it get your stress level up. Do what you can to help but remember that your health comes first. My family is an absolute wreck right now so I can relate. Sometimes I just have to quietly walk away from the mess and collect my thoughts then I find I can offer some energy to help.
dgcote.......how are you doing?
fish.....how's the new bald look?
Tazzy......I trust surgery went well. Are you doing okay?
Mags......Is PT helping with the LE?
mmiserak.....I have had so many scans (PET, CT etc) I can't even count. My doc is very pro scan. Maybe because I am a unique case. So far I have not gone more than 5 weeks past the end of treatment without a recurrence. As it stand now I am scheduled for a PET scan every 3 months or sooner if necessary. I should be glowing by the end of the year.
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Tooky.....beautiful
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bak.......my heart just aches to see such young sister taken too soon. I'm sorry it is hitting you so hard. sending you all my love!
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Hi Everyone!
I am just checking in after a long while. Saw some nice bald pictures - very cute! I have a few myself and will try to put them here some day. Sorry, ladies, this site was my only solace but now I can't even come here as much as I would like to due to my eyes. Finally found out that I have a condition called "pre-retinal membrane". Seeing a retina specialist this Friday, see what he says, how serious this is. I also got new close vision glasses, will pick it up in a week, can't wait. Anyway, my eyes gets really watery, painful, blinded - just feel like closing it and going to sleep.
What causes pre-retinal membrane - well, when a person's body has to respond to an immune dysfunction, the retina develops a thin membrane in the front of it, so as to save the vision from this attack, as the retina is the most important organ which makes us see. This is the natural response (imagine how our bodies are so amazing)! In my case, I am not sure what happened, maybe at the time, when the BC came and attacked my body, there was an immune response, and at that time, the retina developed this thin membrane. It can also be referred to as scar tissue. The scar tissue can fall off, and then I won't have any problems, but that is a big "if". Or it can get stuck to the retina, causing more problems. Surgery would be the last option, as it is a very intricate surgery. Mine seems to be in both eyes already.
I can see fine right now but cannot read, however, that is more of a glasses problem. This new problem makes my eyes painful and hard to keep it open. It has become very sensitive to light. The internet does not say that I can get blind, rather, I can have distorted vision, depending on the severity. The doc told me that as long as anyone can see, then glasses help magnify their vision. The problem is when someone cannot see with glasses, and in my case, that is definitely not the case. I have all my vision.
So now I am facing another huge medical nightmare. I am thinking what if I get blind...... have to ask the specialist that quesion. When I first heard this, I felt the same scare as I had felt with BC.
Sorry ladies, I am trying to avoid stressing my eyes too much, so can't read all the posts. Will try to post here every now and then, just to keep in touch. Love you all.
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theowens5 - DEFINITELY TOO MUCH INFORMATION out there . . CHOOSE what you want to read and hear - for every bad story there is a good story - - CHOOSE to be hopeful!
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Hi Inmate... thanks I am doing very well considering. Continue to take the pain meds - they are certainly helping. Still pretty numb. Nurse changed my dressing on Saturday as was very happy with how things looked. Drains are really a pain in the arse... and there was me freaking out about them ? See my BS for follow up on August 28 - hes on holiday until then. Will get the path report from the family doc before hand... fingers crossed for clean margins. Now just resting up and healing.
Although I haven't responded to you all, I am thinking of you and sending good thoughts to those with trials and tribulations. Stay strong ladies. Love & hugs xxxxxxxxx
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Today I took my 67 year old girlfriend to my oncologist, as she is now in a nursing home about an hour from me. She is a 12 year survivor of inflammatory breast cancer - she also had mets to the brain. She is a miracle as far as IBC goes, but she now has dementia. My doctor said that was the price she pays for living this long. They treated her aggressively, and didn't think she'd be here. That makes me so sad. I hope they figure out gene therapy soon!
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Cocker - glad you were able to move your daughter's appointment up - still the waiting - ((HUGS))
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Tazzy - Glad you are doing well. Don't forget to do your exercises!
Lovely - Good luck your eyes. Hopefully there is something they can do to help that doesn't involve surgery or anything too intrusive.
Cocker - Hope the wait goes quickly and she gets great news !
OBXK - Sorry to hear about your friend!
Welcome newbies! It does get better and is manageable. Ask any questions you need to - nothing is off limits here.
Hoping everyone had a great weekend and minimal SEs!
Doreen
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Just wanted to say a quick hello to all...I was away from the hot city this weekend spending time with my family. They've all been incredibly supportive. Radiation is very tiring but it ends Weds Aug 8. Saw the RO today, she is pleased with the way things are going. Hope to read and post more when I'm less fatigued.
Tazzy - glad your surgery went well.
Cocker - I understand your fears. But as others have said, over 80 percent of breast lumps are benign, especially for younger women. I hope you can hang on to that and be calmed a bit.
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Tazzy...good to hear from you...and glad things are going OK...have heard those drains are nasty stuff...hopefully you can get them out soon??!!
Cocker.you go girl...I'm sure Mandy will be fine but the sooner the better finding this out...I tell my daughter to check herself out all the time...and to be vigilant...I dunno..I was thinking I was 49 at diagnosis and she is only 23.....I do tell her that she is"special" which she doesnt appreciate all...but at least...with any little thing she will be given preference and not told that she is too young to have cancer...blah..I hate to think my daughter or any of our daughters will ever have to go through this crap
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Welcome 5owens and kcgirl and desertmama.......good job on finding this group of ladies. you will find all the support you need here.
Cocker......Ugh! I am sending all my love to you and Mandy.
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Lovely.......so sorry about your eyesight. I had not heard of that before. Cancer, the gift that keeps on giving.
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Well ladies......I was away for a week or so, pretty much had the worst case of drag-ass you could imagine. That does not bode well for an ADHD person like me. In addition to the exreme fatigue, my entire body hurts, constant nausea, headaches and dizziness. Lets not forget the freakin mets having a dance party all over my chest. Seriously! Asked the doc today if I will ever get rid of the mets and he said they are tough but it is possible. I'll accept that answer. Good news, I qualify for the mets trial, but it may come down to choosing the trial over chemo. I will let the good doc make that call for me. He will have a conversation with the trial principal before giving his recommendation. He wants to see some positive results before sending me over to the trial. Oh and did I mention the pain is back on my right side? Dr K couldn't hear anything so we are still going with a clean scan (except for the mets, of course). That means it is still considered a local recurrence. Yeah!
For those of you worried about a recurrence. Try not to worry too much.. As Cocker's Dr said 50/50 chance. I am way past the 50/50 chance and still have lots of fight and in no way consider myself on the wrong end of a losing battle. TN does respond well to treatment. Sometimes it takes awhile to find the right treatment. I will keep fighting until they find the cure. Having good mental strength is as important as the tx. I think I can, I think I can I think I can!
And just so you all don't think I've lost my marbles.......cancer fucking sucks! Losing two more sisters just brings it all home. Tears and sorrow tonight.
Love to you all!
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