Calling all TNs

Hello Everyone!



I was diagnosed on 2/14/13. Never thought I would be in this group. Yet here I am. I come to this site all the time and read everyone's story. My thoughts and prayers are with us all. I think I spent two weeks in almost denial of the diagnosis. I'm stronger today, I will be stronger tomorrow.



I believe I will overcome this and be cured. I believe I got this TNBC from my cell phone. I always stored my phone on the outside of my left breast in my bra. Exactly where the cancer is.



I found the cancer, didn't show up on mammogram, on ultrasound they said it was a fibrodemia tumor.... The biopsy proved them all wrong. Sometimes you have to fight to get the right tests! I knew this lump was new and wrong the moment I felt it.



I am here fighting with all of you my new friends!

Stupidboob when I asked my breast surgeon when I saw him last how do I know nothing is going on in my body if you don't scan believe it or not his answer was, if the cancer does recur it will be better treated when it is bigger and you had symptoms than if we scanned and only saw a small recurrence!!  Can anybody make sense of that cause for the life of me I fecking can't.  Yes how do we make them understand that we need more follow ups and reassurance.  Us TN's need something more than what they are offering.  I wonder how they would feel if it was a member of their family.   

Stupidboob, you will be as beautiful as ever!



Phyllis

Hey gang,
  I know I am a few months away from this but I would like to start gathering information on radiation.   I did not do it the first time, but this time I have too.   I want details because I only thought it burned you, I did not realize it makes some sick, messes with your memory and makes you extremely tired.   Please share your story and any tips with me so I will be ready when the time comes.   
Thank you

I got very tired about 2 weeks into rads (7 wks total)...turned nice and red but not burned.  Had some swelling around the ribs that lasted a couple of months and that was it

Mags

Schatzi14- I was 5% ER+ and my MO told me it is so weak we are just going to treat this as a triple negative. They never discussed hormonals with me.



Deyla

Stupidboob  I had 25 rads.  We have a facility here that is marvellous.  You go on the Monday and then home after rads on the Friday.  Spend the weekends at home and then back on the Monday.  I was away during the week days for five weeks.  It was like a holiday resort, just simply gorgeous there.  Lovely big rooms with ensuites.  You had your rooms to yourself.  I honestly did not have any trouble with rads, just a little bit pink.  No tiredness cause it was like a holiday.  I drove myself the two hours there on a Monday and drove myself home on the Friday with no trouble.  We could buy a huge jar of cream at the reception for    $5 and I am still only a quarter through it yet I use it everyday.  Having said that there was one lady there who was very very fair skinned and she did burn a bit but other than a bit of itching she had nothing else.   All of us there were ferried to the hospital, only five mins away, had our rads and was then ferried back by mini van.  It took half an hour at the most then you had the rest of the time all to yourself.  It really was a lovely place to have rads.  I made lots of friends in that time and still keep in touch now.   So nothing to report from me as I had no side effects whatsoever.     Oh and they provided all meals if you wanted them and every drink was available for you at any time day or night.  We even had happy hour at 5.30pm. 

OBXKaren Thanks for the update on Dawn.  I miss her attitude here.  Please give her a hug for me when you contact her again.  Also, thinking of you and your own challenges and giving you a loving hug, too.

I'm rocking 60 rpm in my rocking chair waiting for my PCP to call with results from my parathyroid gland and labs.  My non-existent symptoms are getting worse by the hour.  Mental case for sure.

Greetings and good wishes to all.  Jan

Here is the reply I received from the doctor that did the phase 2 study on the copper drug:

The taxol is good for you.

No side effects during radiation. Mine are occuring now in the form of Lymphedema.  Not sure if it is being caused by scar tissue from where they took out the lymph node or from the radiation.  Probably from both.

deyla & bak94...thanks for your replies...I wish the medical community would get a standard of treatment regarding TNs. I guess it's different strokes for different folks. Doesn't leave you feeling very confident tho.

jen...glad you have one less thing to worry about...after surgery, the rads will be a walk in the park. Have they given you a date yet?

jen...you have done everything possible to beat this thing...no reason to think you won't have complete success!

I feel certain positive thinking is the best thing we can do for ourselves.To be perfectly honest, other than old age creeping up, I feel the best I have in decades and am taking far better care of myself now.

The rad time will go by quickly, it's just the time to get there and back again...the actual time to get the treatment is just minutes and away you go...until the next day and so it goes. LOL

I am a very impatient person and I hated the waiting for my turn LOL...good luck and lather the Glaxal twice a day! You will do fine!

Doc just called with pathology report - no cancer but found a B9 tumor in the tube. 

Now I can take a good long nap

Karen - so glad you talked to Dawn. I've been thinking about her. Very sorry to hear about her progression. She deserves a break.

I need to chime in on the rads SE.  My rads were very difficult for me.  I guess I'm a wimp, but I blistered so much they had to give me a week off before they could continue.  I was also very tired during the time.  Doctor and techs said I was about as bad (well, my skin) as it ever gets. 

I hope everyone has an easier time with radiation.  Jan