Calling all TNs

NavyMom

My Onc told me the same thing. Keep Vitamin D levels up, exercise 30 min 5 X week and get on with living life.

Saskia, so glad you found our little corner. Keeping positive thoughts for you.

Meadow

Yes Saskia, I second what the girls above say! And....did you find anything good at the jumble sale?

ALHusband

Ladies it can always be worse I guess. My wife was diagnosed with Stage 1 TNBC on April 8, 2013. On April 9, 2013, her best friend, since childhood, who had never smoked even one cigarette in her life, was diagnosed with Stage 4 lung cancer! According to docs at Johns Hopkins she had a less than 1% chance of surviving a year! Well, that was 19 months ago and she's still going strong thanks to a clinical trial of a targeted therapy. The reason I bring it up and say "it could always be worse" is that just this week that same woman's 24 year old daughter was diagnosed, after a siezure, with a brain tumor! Now mom and daughter are undergoing treatment at the same time at geographically different hospitals. Please pray for them. Let's just all remember to appreciate each day!

JAN69

ALHusband Prayers going up and soaking up the wonderful things around me.

Radical2Squared

ALHusband,

Thank you for the reminder....

Prayers for both your wife's friend and her daughter....as well as your wife because she is probably feeling like none of this is fair!

Luvmydobies

ALHusband, I'm sorry to hear about your wife's friend and daughter. That's horrible! I'll pray for strength and comfort for them. Cancer sucks!!! AARGH!!!

Tazzy

Did Lostinmo ever post on this thread? I don't know - she was TN.   I just learned that she passed away today.   I fucking hate this disease.

Tobycc

oh Tazzy that sucks

Nettie1964

Oh no!!  I hate to hear that news!!  Prayers for her family!

BanR

My prayers for your wife's friend and daughter, ALhusband.

Saskia, you will be in my thoughts and prayers. Please keep talking to us through this forum.

This disease, desperately needs a cure...

Btw, a small piece of news. Cleveland clinical trial for targetted therapy for tnbc,is on its final stages now. Please do check

Thanks for wishing me on my birthday.... I turned 36. There was a time when I used to dread reaching 40 and now I am eagerly looking forward to touching 40...!!! How things change so drastically....

Luvmydobies

AMEN BanR! I'm hoping to at least reach 50! I'm 38. I never thought I'd be diagnosed with BC, especially when I was 36! Just sucks! It sucks for anyone though, no matter the age. I'm getting tired of thinking everything is cancer or related to it. I have had a sinus or upper respiratory infection for over three weeks and my mind is going to it's the start of lung mets or something. My husband had it before me and he's mostly over his but coughs off and on. My cough alters between wet and dry. The yellow color is finally clearing up but the middle of my chest hurts when I do cough and the right side which happens to be the cancer side is tight all the way around and has a bit of a burning pain so I'm scared! I had my three month checkup with the Onc last Monday and he said everything sounds and feels fine. I'm like do they ever not think it could be mets? I know I have to trust them but I still worry. I mentioned my badheadaches and he didn't think they were a big deal because they come and go and the location changes. He said the pressure is likely due to sinus/allergies and fluid behind the eardrums, but I still fear the worst. UGH!! I shouldn't have to deal with this at this age, it seems.

Sorry for being so negative but it's been a rough few weeks...

lilyrose53

ALHusband, Prayers for your wife, her friend and daughter. Cancer has definitely changed the way I look at things. Everyday is a gift

Nettie1964

Still shook up about the news of lostinmo as her post in the summer seemed positive.

I.hate cancer

Tobycc

I am praying for her family now. Has anyone heard more? Gentle hugs and strong prayers to all of you

Kath

Tobycc

luvmydobies....forgive me as I am still new to this. For us with TN, do they check "tumor markers" or something? Praying for you.....hope it is all cleared up.

Luvmydobies

Tobycc, my Onc doesn't do tumor markers because he says they're not reliable. Many doctors feel the same way. My husband told me tonight that his chest still feels tight. My Onc did tell me Monday that some viral infections linger for awhile. He said with my symptoms like coughing up colored phlegm, post nasal drip, fluid behind the ears, etc. not to worry, especially since my husband had it and is still having the after effects too. Plus I have asthma so that can make it harder to recover. So I'm trying not to worry but it's hard. Thank you for the prayers! Don't let my post discourage you. It's just hard sometimes after treatment. I pray for all of us, including you. XOXO!!!

simplelife4real

I hate it every time I hear of someone passing away for TNBC...from any kind of cancer actually. Luvmydobies, I've had a chest cold too and can relate to the "is it cancer" thoughts. I used to be a nurse, so I can logically look at my symptoms and know it's just a cold, but those thoughts would have never even been in my head before bc. Learning how to live with day to day symptoms post treatment, and just learning how to live with the "unknowns" is proving to be a struggle at times. So far, the fear has never been as overwhelming as it was in the beginning for me.

I'm about 6 months out from my last treatment. I wonder if it (the fear) ever goes away.....particularly doing the first five years post diagnosis. I kind of feel like it's in the back of my mind all the time....just lurking there. I rarely cry about it anymore, ususally only when I really dwell on it, but it's there.

My SIL had ovarian cancer about 20 years ago. She told me she kept thinking she was going to die from a recurrence. She never had one. Every few weeks, she would say to herself, "I'm still alive." Finally, she realized she was going to make it. I'm thinking that with TNBC, it helps a lot to get past that three year mark....and it really helps to get past the 5 year mark.

I just try to make the most of each day and be grateful for each day that passes without a distal recurrence.

MomMom

Simplelife - beautifully said. 

Could use some advice from you wonderful TN ladies.  I just had my first follow up mammogram and ultrasound post treatment, which thankfully, came back all clear.  I saw my breast surgeon yesterday and her plan is for me to have a new ABUS ultrasound, designed for dense breast tissue (which, of course, I have) in April and then to have another mammogram in September 2015.  Her plan may change, but she doesn't think I need an MRI until April or May 2016.  I would love to have an MRI in Sept 2015 rather than another mammogram as the MRI is what caught the early TN in Jan 2014.  She as much as acknowledged that the Stage 1 probably would not have been seen on a mammogram, and I remember her telling me that MRIs were good at finding "worrisome" areas in dense breasts like mine.  I think maybe she's getting away from the MRI because insurance is often hesitant to cover it, and of course, sometimes you get false positives with it.

I would appreciate knowing what recent early follow up mammos v. MRIs have been for you ladies.  I'm sure the protocol may differ in different parts of the country.  I'm in Northern VA, which is obviously a major metro area.

Thank you!

Paula

eileenpg

MomMom= My stage 1a 6mm TNBC was picked up on a 3 d mammogram yearly check up. The previous year I did a 3d mammogram and they went back to check that. Nothing was there. I then was called back for a ultrasound. My BS told me if I had not had a 3D mammogram this would not have been picked up until the follow year. I am going for my first scan tomorrow as my MO has everyone get a scan. I have never had a MRI.

I go for a follow up 3d mammogram after radiation in late jan and then every 6 months.I think that is followed by an ultrasound. I do not know how many years I do that.

DorMac

I would certainly prefer an ultrasound and MRI as I don't trust mammograms at all to find TN. A lot of women on this site have had mammos within 6 months to a year before they find the tumours themselves.

My younger sister had a mammo 7 months before she found her own tumour and, unfortunately, it was already Stage 4 and she passed away from TNBC. Because of our family history - almost every female on my Dad's side of the family has had breast cancer but those of us who have had the BRCA test have tested negative for BRCA gene mutation, I volunteered for a clinical trial for examastane. Being on a clinical trial meant that I had very intense follow-ups including MRIs and that's how my breast cancer was found, luckily at a very early stage. We here in Canada get all our medical tests, etc. covered by our provincial health care system - thank god! But, apperently, now that I have actually had TNBC, a mastectomy and chemo - I no longer qualify for MRIs. I practically begged my oncologist for MRIs but, apparently the "new and improved" Ontario Breast Screening Program (the group responsible for deciding on testing criteria) has determined that I am NOT at high enough risk! Screw 'em! I am going to PAY for MRIs myself 'cause I am sure that if it recurs, by the time a mammogram may find it, it may be much more advanced.

Sorry for the rant. I have, for the most part, stayed positive throughout this whole experience - mainly because it was found so early and I'm pretty sure they got it all with the surgery and chemo. But I really feel abandoned by this Ontario Breast Screening Program. Luckily, I can afford MRIs but what about those who can't?

Doreen

MomMom

Eileen & Doreen,  Thank you for your responses.  Eileen & Doreen, do you each also have very dense breast tissue?  Eileen, You were so fortunate that the bc was caught when it was at such a tiny size - only 6mm - and yet you also had chemo, which is not surprising for TN.  There are so few with a TN diagnosis who do not get chemo. 

I have also had the 3 D digital mammogram, in addition to the regular mammogram, ever since they became available which was 3 or 4 years ago in my area.  I gladly paid the $40 out of pocket fee.  3D mammos are especially good for dense breasts - although not as good as an MRI - at least that's my impression.

I was pleasantly surprised to find that this time, I did not have to pay for the 3 D mammo!  I was told in the last few months, Medicare, which is my primary, is now covering them.  My RO thinks they will be covered for everyone very soon.  They should be!

Doreen, I'm with you...If we need an MRI to possibly save our lives, then we should have them, and they should be covered!

 

eileenpg

MomMom+ I pay $100.00 to get my 3 d mammogram. Now I will get a mammogram and ultrasound afterwards. Yes, I have dense breast tissue but,my BS told me they are finding smaller and smaller BC tumor with this 3D's. Again,never had a MRI. My MO in Baltimore and here is Florida were both adamant I have chemo. I am going to do 6 rounds .One more left YEAH!!!!!!!!!!! Then 7 weeks of radiation. Both could have cared less the size. They said TNBC gets chemo. I followed their suggestions.

Today I am not myself kinda down I know I am super lucky it was found so early. Just today is hard for me.

jenjenl

This summer at my annual preventative well visit my urinalysis had blood in it, i did a 30 day repeat and it was still there. I was referred to a urologist and finally got an appt end of September. I meet this young doctor, give him my history. No clear reason why it's there, he wants to do a cystoscopy. It scheduled for this Monday November 24. I'm not looking forward to it - I get to be awake and watch this little camera go up my urethra and explore my bladder. CRAP! I am hopeful it's nothing since I had an abdominal scan in the summer and I believe it would have shown if something was going on with my bladder or kidneys. At the same time I keep thinking here we go. The doctor in a round about way said with me bring brca1+ and TN he's not "messing around". Ugh. This sucks. Any feedback or experiences?

Luvmydobies

jen, did they culture your urine for infection? Do you drink very much water? I used to not and I always had a trace of blood in my urine and my doctor said it was common in folks who didn't drink enough water. What would BRCA 1 have to do with blood in the urine?! Vaginal bleeding can show traces of blood in a urinalysis but it seems like you would know if that was happening. My doctor told me I'd be a case study if TN went to the bladder. I'll pray for you. Keep us posted! HUGS!!!

Radical2Squared

jenjen,

Brca1' s are prone to bladder cancer and we all know the tn story so my comment to you is...you found a doc who knows what he's talking about!

Hopefully it's lack of water or a bladder infection, but it's great that your doc knows how important to check out!

Luvmydobies

Radical, do you mean BRACA 1 can make you more prone to bladder cancer as a primary, or mets from breast cancer? My doctor told me it's extremely rare for BC to spread to the bladder. I have off and on burning urination but tested negative for an infection so I was worried it was bladder mets and the TN scares me, but like I said the Onc said I would be a case study it if was mets. I was told to drink a lot of water. I'm not BRCA positive but still... Thanks for any info!

I'm not trying to take jenjen's post. Sorry if this is taken wrong.

Jenjen, keep us posted. Prayers for you on Monday!!

MomMom

Eileen,  Sorry you are having a down day.  We all have them from time to time.  Hang in there.  You mentioned an MO in Baltimore.  Do you go to Johns Hopkins?  I know 3D mammograms are good for dense breasts, but I'm still interested in hearing if anyone else here has a breast surgeon who will prescribe an MRI at least every other year for TN & dense breasts. 

Jenjeni, Sending good thoughts your way that all will be fine.

jenjenl

Rad - I don't believe that to be a true statement (brca1 prone to bladder cancer). 

I know it's not a UTI or stone or water related.  There are not too many other options and I have the same feeling I had when i had my biopsy.  Not sure how i'm going to make it to Monday afternoon....seems like forever from now.  Now I regret not being more aggresive in the root cause and hanging my hope on the scan. Shit.

jenjenl

Rad - I don't believe that to be a true statement (brca1 prone to bladder cancer). 

I know it's not a UTI or stone or water related.  There are not too many other options and I have the same feeling I had when i had my biopsy.  Not sure how i'm going to make it to Monday afternoon....seems like forever from now.  Now I regret not being more aggresive in the root cause and hanging my hope on the scan. Shit.

Nettie1964

I'm jumping ahead to respond before I read everything because I have had my 3rd followup Mammo and this last time was the first time that I received a letter from the radiologist saying that I needed a six month follow up due to dense tissue???  I questioned my surgeon, who insists that I do NOT need a six month follow up, only in a year and my MO, who also said he didn't think it necessary but would order it for my "peace of mind"!  WTH???  And now I'm wondering why they haven't ordered an US for me??  As it seems to be that most on here, with dense tissue are getting that??