Calling all TNs

adagio

daughterof - I am 65 years old and I struggled with whether to have chemo or not - the thought of putting chemicals into my body horrified me. It took me ages to make the final decision! My family (except for one daughter) were totally behind me to do chemo - they were not ready to lose me just yet! When I made the decision,  a horrible headache lifted from me ( I was convinced I had cancer of the brain) - but the headache was stress related. Like others before said chemo is do-able. Good luck to your Mom with her decision! 

adagio

cocker - in your pocket for your scans tomorrow. I have never had  a scan, but it must be quite a stressful time wondering about the outcome.

Slowloris - you are an inspiration  to us all - thanks for reminding me to live each and every day to its fullest.

Cocker_Spaniel

Daughterof,  you obviously care for your mum a great deal and only want the best treatment for her.  With all that you have had to deal with in your family re cancer it's no wonder you are scared.

I was 65 when diagnosed. When I went for my first visit to my surgeon I told him, I don't want surgery, I don't want chemo and I don't want radiation.  He quietly looked at me, said alright then and closed the file.  Then the tears flowed because I thought how the hell am I going to get over this for my family. He then said I have booked you in for surgery on 23rd November 2011 and in between tears I said ok then and just like that I made up my mind to go for it.  I then went on to have everything.  Chemo wasn't a walk in the park.  After every infusion there was two to three days of feeling pretty horrible but then I would come right and feel great. So it is doable.    When those bad days came and I used to dread them coming around I came on here and these ladies helped me through every bit of it.  I then went on to have radiation which to me was a walk in the park (not so for everyone as everyone is different as you know) but I had no burning, no tiredness, no pain.  I was scared stiff about chemo because I have a fear of vomiting but the drugs they give you are wonderful and I didn't have any signs of sickness.    

Alternative medicine has never filled  me with confidence because it's not tried and tested so to speak.  But if that is the way your mum wants to go then she must at least try it.  Her Oncologist will be the best person to talk to. He will advise her on the best plan for her and she will feel better once a plan is put into place. 

She is not too old for treatment. 64 is not old these days and with the support of everyone on here and her family she can do it believe me.

Don't be afraid  to come on here.  I'm glad your mum has got a kind and caring daughter because she will need your support and hopefully she will feel like coming on and getting to know us.  There are many tips on chemo we can give her that she might find helpful.  They are the sort of things the Oncologist doesn't always  get around to telling you about because they are more into the treatment side. 

Good luck to you both and I hope your mum does at least try chemo because as Titan said she can stop it at any time, but I bet she won't stop it.        

Cocker_Spaniel

Cat good luck for tomorrow girl.  Remember we are always in your pocket every step of the way.

Adagio yes I do find it stressful because as much as I try to stay positive there is always that little part of my mind that wonders. My daughters also said exactly the same as your girls did, we are not ready to lose you yet mum.  Thank you for your kind thoughts.

TifJ

Cocker- best wishes on your scan today (it is Tuesday there right?)!! Will be thinking about you.

KooKoo621

praying for Cat and Cocker!  

MaryFox

Daughter:  I was diagnosed TN last year at age 70. Tumor was 5.2 cm, BIG.   Did 5 months of chemo and now getting rads.  I felt this was the right way to go for me.  I'm otherwise healthy.

Does you mother have other significant health issues?

TN is serious stuff.  Do your research, and ask questions of the oncologist. The onc should be straightforward about the side effects of chemo, given your mother's medical history. Only your mother can decide on her treatment, but with TN, I'd never have considered not having chemo

Luah

daughter: I hope your mom's docs are advising her on the relative risk/merits of chemo in her particular situation. Certainly, she should have a consult with one or more oncs to see what they say. (Personally, I would be surprised if an onc didn't recommend chemo for a tumour that was over 2 cm., but only they have your mom's full medical history at hand.) It's important to realize that chemo is the ONLY systemic treatment for TN. Our sisters with hormone+ disease can turn to hormone therapies but these don't work on TN. Chemo is the only way to kill any cancer cells that may be floating beyond the original tumour site... if not, there is the chance they will take up residence in the bones, lungs, brain, liver or elsewhere, and then we are at Stage 4 disease. I realize this sounds alarming, but it is the risk we all have to offset against the effects of chemo. Of course there are no guarantees with or without chemo... it's just a matter of minimizing risk where it makes sense to do so. I wish your mom well - she is lucky to have a daughter who is trying to support her in this tough journey. 

FierceBluebird

low energy these days, but sending positive thoughts to the procedure girls this week.

lori, well said.

InspiredbyDolce

The question of "what is my anniversary date" often comes up in this forum, and we often have different diagnosis or treatment dates that we reference as our anniversary date.  I came across this article and in regards to recurrence peak, this is what is mentioned. The link has other Q&A regarding TNBC.

"August 2013 Ask the Expert: Triple-Negative Breast Cancer Highlights"

"Question: If TNBC is to recur it is usually in the first 2-3 years and I have heard that at 5 years or beyond there is a better outcome. My question is when do you start to track your anniversary date? The day you were diagnosed, the date after you completed chemotherapy or radiation therapy, or the date you had surgery?"

"Dr. Anders: In the landmark study that defined the peak of recurrence at 3 years for TNBC, this was defined as “from date of diagnosis” in the Clinical Cancer Research article by Rebecca Dent et al. entitled “Triple Negative Breast Cancer: Clinical Features and Patterns of Recurrence.”

LRM216

((((Annie))))  Thinking of you Annie and sending hugs and all good wishes

TryingToSaveMom

Hi DaughtofaTN,

I thought it might help you a bit to hear from another 'daughter of a TN'. My mother was age 71 at diagnosis in 2011 and was a either a stage ll (b) or lll(a) (her doctors never gave us a definitive answer on that). It was a very scary and stressful time for her and the rest of our family and initially she was against chemo because she felt it might do more harm to her but after her mastectomy, she sat down with her doctors and us and discussed in depth, what to do next. She came to the conclusion that she really wanted to be around for us for a lot longer even if it meant a treatment that might have some big challenges. So she opted for the all of the treatment recommended by her oncologist, AC / T  dense dose x 4, followed by radiation.

Speaking personally it's a real roller coaster ride when you're the daughter of someone about to under go cancer treatment. I cried many tears privately but did my best to put on a brave and positive face in front of my mom. My sister sometimes couldn't help breaking down around mom, which was understandable, but I felt that if I could hold it together, mom would have at least one positive person in her corner. Every person is affected differently in terms of their emotions. At any rate, mom says that eventually she took strength from my approach and in spite of wanting to quit chemo a few times when things got tough, she just buckled down and kept going. As a result, none of us have any regrets or 'what ifs' nagging in our minds.

Chemo wasn't easy but mom hung in there and we're so glad she took all the treatment suggested because she's alive and well and has been cancer free for nearly three years. This June she will be there to walk me down the aisle at my wedding. You just can't put a price on having your mom around for both the big and small moments in your life. So I guess what I'm trying to say here is, in spite of your own concerns or fears, just do your best to support your mom and help her to make the decision that is right for her. I wish you and your mom the best of luck and hope that like me, you will eventually you will be able to tell people about a positive outcome for your mom.

One more thing - I found this forum very comforting, reassuring and inspiring. In spite of the fact that I didn't post that much, the ladies on here did much more for both mom and I than they may know and I still lurk occassionally to follow how they are doing and privately cheer them on... so a belated thank you to all of you! May you all be around to experience and enjoy many more big and small moments in your lives and in the lives of your family and friends.

J. in Ontario, Canada

Cocker_Spaniel

TryingToSav  what a wonderful warm and uplifting post.  I'm sure this will help Daughterof.  Many good wishes sent to your mum and your family. 

Linda my friend  thank you for the hugs will need them today.   

Luvmydobies

Cat and Cocker Spaniel, you are in my thoughts and prayers today. HUGS!!

Luah

TryingToSave: Wise and beautifully put! I'm glad this forum was helpful to you and your mom. 

tekwriter

Hi Daughter, sorry if I was harsh sounding the other day.  I think Luah put it best. Never put any of us down for the count because of our age. We do not consider ourselves old. 

simplelife4real

Cat and Cocker....wishing you both the best this week.

Cat, for what it's worth, I've had a biopsy on nodules on my neck and the biopsy wasn't nearly as painful as the breast biopsy by a long shot.  It's a little scary knowing they are sticking a needle in your neck, but the reality of it is that the injection that they give you to numb the area is the only part that hurts....and it is just a sting for a few seconds.  Compared to other procedures, I felt like that the neck biopsy is a cakewalk.  I hope it goes well for you....we will be in your pocket!

Yesterday, I did #5 of 33 rads....I'm hoping this week of rads will be as uneventful as last weeks.  

I just want to say how much I have appreciated everyone's comments about learning to live with the uncertainties of cancer.  We all have different ways of coping, but I feel we have so much we can learn from each other.  It's wonderful to me to know that I'm not alone on this journey and that I can come here and share with sisters who understand and care.  Thank you.

Kay

Scoobydoo

5 year TN survivor.  Had some calcification in other breast which was biopsied.  Completely clear!!!!  I also have had thyroid nodules biopsied  before and was a breeze.  Nothing like breast biopsies.  As a matter of fact I have another thyroid biopsy this month.  I am not worried at all.  Ladies, I like most of you were terrified with the TN diagnosis.  I did the aggressive chemo then rads.  I am still here and thriving. 

slv58

Scoobydoo, may I ask about your thyroid nodules? Ever since rads I have felt a lump or thickening in my throat. Had TSH checked and yes-very hypothyroid. I was put on a very low dose of synthroid to start and it has brought my level down to acceptable standards but I still feel a lump when swallowing. Pushed for an US and it came back saying there were small nodules, my PCP says that because they were small, the lump I'm feeling is not from thyroid. She wants to send me to an ENT to evaluate. I'm confused and can't help wondering why my TSH of 46 came down to 3.8 with only .05 of synthroid. Any info you can give me would be appreciated. I guess I'm a little worried they may be missing something.

Cocker_Spaniel

Scan now over.  Rads Tech says she doesn't like to give out results in case she is wrong because she is not a doctor, fair enough. Results then go to the Radiologists at the hospital for reading.  She said I would know before ASAP if anything was wrong.  Anyway she couldn't find my ovaries.  As I had a hysterectomy she said there was nothing to anchor them and they move around and could even be sitting next to each other. I said they are probably all shrivelled up by now.  She then did a transvaginal exam  to check which was ok but the instrument she used was huge.  Long time since I had a pelvic exam!! That was a bit uncomfortable but the worst bit was drinking the cold water before I left for the scan.  1½ litres of cold water first thing in the morning is not on, As she finished she did say I think everything is ok because I can't see anything.  So hopefully with all of your best wishes she is right. Thanks for being there for me ladies.  

Just waiting to hear from Cat now and hoping all went well for her.     

GuyGirl

Anyone ever just pass out.  I was on a bus trip on Friday and just blacked out.  One minute I was having the time of my life and the next I was out like a light.  My friends tell me I was out for 3-4 minutes, that I looked terrible and my lips were blue.  They took me to the hospital and they said it was dehydration.  I went to my family doctor today and she scheduled me to see a cardiologist to have a stress test and also to have an MRI of my brain.  Now my family is trying to keep me in a bubble.  So frustrating.  Finally start to feel normal and it something like this happens.

Cocker_Spaniel

GuyGirl could you have got a bit overheated on the bus with all of your 'laughing'.  A stress test and MRI is a good idea just to check all is well   These things are so annoying when you are having fun and enjoying yourself.   

slv58

Cocker, glad it's over and hopefully you get results soon! I had to laugh when you said about the probe being huge-when I had one last year, I asked if they had a vibrating model -she wasn't amused! I also hate drinking all that water and I'm usually told my bladder is too full, so go relieve yourself "a little" are you serious? A little? Once it starts going there's no holding back lol

GuyGirl, hoping that your fainting is as simple as dehydration. It's good your family dr. is following up to rule out anything so you don't worry. I have fainted once before from dehydration, it wasn't a pleasant experience. 

BanR

hi wonderful ladies..

Just finished 21 radiations today and I have 12 more to go!

simple: till now it has been pretty ok with me. i wish you sail through rads with least difficulty.

inspired and cocker: thanks for all the wonderful words dear. 

ally: regarding neuropathy, i had to consult a neurologist and kept my MO in the loop all the time. i have noticed that neurologists are better for extreme  chemo- induced neuropathys.( but keep your MO informed all the time)

gram: so good to hear you got the Pcr. I didnt go through neoadjuvant chemo but I was told by a MO ( he is quite a conservative doc) that ur chances of survival are at least 92 percent. Also since you are post menupausal, TNBC shouldnt behave aggressively in your case. 

jianchi: lovely to hear that you are brca negative and no more surgeries for you! hows rads going on?

cat : i found one link which talks about a promising targetted treatment in clinical trails. here is the link

http://medicalxpress.com/news/2014-03-tough-to-tre...

and hang on please. also very happy to hear from you on and off.

bak: quite a terrible experience reg the chemo port removal! but then good that it is out..means that you are considered out of the risky phase!

rest everybody...sending warm hugs your way!

Further update from my end:

a> the joint pain i was talking about is still there since past 2 weeks. talked to my oncologist and he said that in all likelihood it could be the side effects of taxol ..he will observe for 3 more months and hopefully it should resolve. i am almost quite eager to get a bone scan done..since while i was having taxol i never had this as a side effect ( i had burning sensation under feet and on my back..terrible burning sensation actually). i wonder 3 weeks after completion of taxol how can a completely new taxol induced side effect come up!

b> the pathology report post surgery mentioned the presence of 15 percent focally positive er pr cells. the core biopsy however mentioned pure triple negative. i repeated the IHC from 2 other labs and both came back pure TNBC. My onc hence has decided that i am not a candidate for hormonal therapy. he says it could be somewhere around 10 percent er pr positive cells which is regarded as negative for treatment purposes. only those women whose tumors have more than 10 percent positive cells get hormone therapy. my doubt is what happens to us, the ones having boundary condition er pr..do those small number of cells escape targeted treatment? 

Luvmydobies

GuyGirl, hoping it was just dehydration. These are the types of things I get nervous about, fainting or falling and it happening while I'm alone! Of course my first thought would be brain mets, but that's just how I think now. I'm almost eight months out from treatment so I still fret over every little thing! Aargh! Anyway, keep us posted on what you find out. 

Titan

Good luck KooKoo..with your new girls tomorrow..will be thinking about you.

Annie...only you...lol....biggest probe ever....you will hear good news soon

Guygirl...maybe you were just dehydrated.......I have heard that even "normal" people pass out now and then....no worries.

CatWhispurrer

I made it through the biopsy!  I didn't get tortured like I did with breast biopsy.  They did good with heavy sedation as locals do not work unless I am almost totally out - my adrenaline and epinephrine seem to override lidacaine unless I am sedated.    They also gave me extra numbing shots when I said it started hurting.    I am swollen and neck is very sore, but pain meds are helping.  Thanks for everyone's support.   

Banr - thank you for that article.  It looks very promising although it looks like it is years away from human trials :-(

Cocker- hope you get good results ASAP!

Nettie1964

Banr, I found what your Dr said interesting as mine has me on the AI and I'm only 2% er+.  He says the new study showed the cut off at 3% but in my case it is to close for comfort. This was also there opinion from my Dr at MD Anderson. So who knows? We all have to trust our Dr.

Cocker_Spaniel

Titan, Slv58 yep could only be me.  The tech was quite straight laced as it was considering what she was doing and that made me grin on it's own but I thought she was going to lose her bloody hand and I'd never walk again.    

Jianchi

BanR, good to hear that you only have 12 rads left!   I haven't started radiation yet.  I am having my port removed on Friday so Radiation should start next week.  How did you have the port removed?  At the office or surgical procedure?