Calling all TNs

KimmyD78

Hi ladies! Don't think I've introduced myself in this thread, yet. I was diagnosed last week with TN Stage IIIB at the ripe old age of 36. I had my port placed Friday, have had several other tests, PET, Echo, etc this week and I start my first round of dose dense AC, followed by Taxol, on Thursday. 

Mitty, your post above gives me hope! I'm just starting down this road and I'm so glad to hear the positive stories, since the ones usually associated with TN are usually grim. 

TifJ

Congrats Mity!! What a wonderful feeling that must be! I just had a 6 month checkup with my BS and she still wants to do every 6 month. I see the MO early July and I will be curious to see if he lets me go or changes the usual 6 month checkups any. I will be 4 years in August.

Nettie1964

Kimmy, I'm curious as to why you had a PET scan, I too am TN stage 2b but I've never had a PET!  Kind of makes me nervous that I haven't!

megomendy

Allydp, thanks for the info on yr transfusion. That's what I wanted to hear. Today I got up for work, showered, and got right back into bed. Mine is about 8.something.

TifJ

Nettie- I didn't have one either despite my MO wanting me to have one just by being TN- my insurance wouldn't approve it. My MO fought with them, but they still refused. I always wish I had had one too!

Islandmama2

So I saw my oncologist today. Apparently my HER2 status is equivocal on my pathology report so is awaiting FISH testing. 

I still will receive A/C & T. After I'm done A/C they may add in Herceptin if I'm HER2 positive. 

We talked a lot about dose dense vs. regular protocol every 3 weeks and she was against dose dense. She does say the research supports dose dense and doesn't deny it but clinically dose dense isn't great. Greater risk of heart issues and risk of leukaemia. She also said that the other oncologists in the clinic feel the same way. She mentioned that a top BC oncologist also recommends regular A/C/T. 

She said if she were me she would not so dose dense. I chose not to do it. Now after the fact I am worried I didn't make the right choice. 

My friend works in the chemo room and has seen many ladies start on dose dense and not be able to tolerate it so end going on the regular protocol anyways. I'm hoping that the regular protocol will allow me to feel well enough to eat right and exercise. 

 start this week...

KimmyD78

Nettie - sorry to cause confusion. Apparently my fingers typed too fast and my eyes didn't catch the mistake. I'm not IIB, I'm IIIB. I just edited my post to reflect that. 

As far as testing goes, the PET scan was a breeze. I've started to feel like a human pin cushion over the last 5 days (it took FOUR tries in different places to get my IV in for the port). But I didn't even feel the needle stick for the glucose check and dye today. I told that tech I wanted her to follow me to all my future treatments that involved needles. LOL. Fingers crossed it comes back clean. I've had some back pain that I've noticed more in the last few weeks. I've had a bit of back pain off and on for years, so I'm hoping it's just regular old normal for me back pain, and not something else to worry about. 

Nettie1964

Kimmy, New I I'm more confused..what makes you 3b? My tumor was 5cm but clear margins and clear sentinel node.

KimmyD78

Nettie - going to have to get a little wordy here, sorry! 

After my biopsy, the tumor area started showing a slight redness and a bit of edema I was already experiencing increased a tad. The diagnostic radiologist commented on the edema in his report and said it might possibly be inflammatory carcinoma or secondary to the enlarged axilla lymph nodes that were observed at my ultrasound. 

When I met with my onc last week he did a clinical exam and said that since I have a bit of redness, edema, and the slightest peu d'orange (only noticeable to me in one tiny section when the right boob gets cold), that he would classify it as IBC. 

I met with a surgeon less than 2 hours later, and when I asked him point blank was it IDC or IBC, he said that he wouldn't call it IBC, but IDC with skin involvement. But that it really was just semantics. My skin is starting to show a bit of reaction from my tumor, and the protocol that we had planned for treatment is no different from IBC and IDC, thanks to my TN status, young age, aggressiveness of tumor, etc. Neither one felt it was necessary to put me through a punch biopsy to make it official, when neoadjuvant chemo is the standard protocol when dealing with 3B. 

Thanks to lurking here for weeks waiting on results, I had a tentative treatment plan in my head. Neo chemo, lumpectomy, then rads. But because of the skin involvement, both of them squashed my hopes of having a lumpectomy.  Actually both docs are recommending a BMX, again due to my age, aggressiveness, etc. I know it's not the end of the world, but that's been my biggest hurdle so far. Even though my right boob wants to kill me, I was hoping for a good enough response through chemo, that I would've been able to save it. 

 

ALHusband

Wife's Onc has announced he's leaving the practice to move out of state to teach in a Medical School! Back to the drawing board finding another good one.

megomendy

ALHusband, that's tough right in the middle of treatment. Is there anyone else in the practice you can use?

jenjenl

They compared the 2012 vs 2014 scan and the L4 lumbar area that "lit up" appears to be a none issue.  It was there in 2012 and has not grown.  They indicated it might be prior damage (scaring) and/or bone shadowing.  The bone shadowing part i didn't understand.  So that's the update.  Let the good times roll

Nettie1964

Thanks for explaining Kimmy! 

Congrats Jenjen!

 

ALHusband

Megomendy there are several in the same practice. But, just because they're in the practice doesn't always mean they're good. It's just the "sifting" to find a good one that's tough. Even the departing doc went so far as to say, "There are some in this building I wouldn't refer my patients to." I'm just glad that if this had to happen, it happened during "surveillance" rather than in the middle of "active" treatment. I think that would have been tougher.

sylviaexmouthuk

Hello Mitymufin,

I am just popping in to say that I am very well and life is fine over here in the UK. On Friday June 20th it will be nine years exactly since I was diagnosed with breast cancer. Cancer with triple negative receptors was really in  the dark ages at that time and at the hospital nobody called it this. I was just told the prognosis was not good because my breast cancer was not hormonal and tamoxifen etc. was no good for me. I did all my research on my own. At the time I thought I was going to die. Here I am nine years later!

I think we still have a long way to go in dealing with breast cancer in the UK. I read this week that of the 50,000 women diagnosed with breast cancer a year, 12,000 die from it. That is way too many.

Thinking of you and wishing you all the very best.

Sylvia xxx

sylviaexmouthuk

Hello Cocker_Spaniel,

Thank you for thinking of me. I always read your posts on this thread and I do love and appreciate some of the profound statements that you post, not to mention some of the many artistic illustrations that you post. I do hope all is well with you. How is life in New Zealand?

Keep well, fond thoughts.

Sylvia xxxx

ALHusband

Jenjen my wife had a tiny spot "light up" in her arm. Doc said the same thing that he's reasonably sure it's nothing and cited frequent false positives. Radiologist concurred on the "it's nothing". Doc says something as benign as inflammation from working out at the gym can sometimes cause a spot to "light up".

jenjenl

Good to know ALHusband, thanks for sharing.  I am so relieved today...almost giddy.

Allydp

Jenjen - woohoo, wonderful news!!!

Radical2Squared

Yeah Mitty!

Kimmy if you're not there already come join us in the June 2014 chemo thread. I think I saw you there but I could be wrong. I started my AC yesterday and had my Neulasta today. So far so good.

Kellya

I'm guessing losing our hair is almost always a definate occurrence?  I looked today at a halo which was kind of like a headband with hair and then you wear a scarf or hat.  I guess my question would be, what did you guys do? Did you buy a wig, or the halo, or just go with your scarves and hats?  I'm guessing my chemo will start mid to late august.

Radical2Squared

I bought a few different halos but I'll mostly do hats and scarves. Most people I know know I have bc I just want to protect my head! I didn't get a full wig. It's summer and I hate to sweat!

Meadow

Kelly, yes, you will loose your hair. But I hope you find that it is not as bad, as dreadful as you might think. I really didnt mind being bald. I found it freeing to not have to fool with my hair. As I was dealing with so much on my plate, it was one thing I didnt have to think about.  I started chemo in August as you are, and it was hot, then winter came and I wore hats and scarves and it was fun picking them out. Then my hair started to grow back in Feb. The American Cancer society gives free wigs, and I did get one. But it made me feel like I really was sick so I never wore it. 

I made a point of purposefully showing people my bald head. This way they were not uncomfortable at all. As they saw I was relaxed about it they were too. I hope your hair free days are easy for you, and my thoughts are with you. 

There usually is a group here on BCO for people who start chemo in the same month. I joined the Chemo August 2013 group and they have been like sisters to me. We share our experiences, and encourage each other. If you cannot see that one has been started yet you can start a new thread and be the first! Others will find it and join. 

Thinking of you, Meadow

Allydp

Kelly - I bought a wig, but have never worn it. For some reason I feel silly in it. Like Radical said, everyone knows I have BC, so I've just chosen to do the hats. I found the cutest little online shop in the UK (www.suburbanturban.co.uk/) where I've gotten all my hats from. They are different from anything I've seen anywhere else and I get quite a few compliments on them. Check 'em out if you decide to go that route. 

I also had my closest friends over the weekend before my first chemo for a "Buzz Bash" where we shaved my head. It was my way of taking back some control and turning a horrible event into a fun memory. 

Embarking on chemo is a scary time, but it's totally doable and you will do great. Wishing you all the best.  

Meadow

Ally your avatar pic makes me smile every time it see it. 

Allydp

Meadow - thank you so much! That is so kind of you to say. 

jramick

I bought two wigs and the scarf hats.  A hospital here has a program where women turn in their wigs after finishing treatment and then sell them at a very cheap price for quality pieces.  Check with your local cancer foundations and clinics to see if they do this.  I agree with meadow In the "convenience" of being bald.  When going out I never had to "do" my hair, just throw a wig on! Ha!

Radical2Squared

Tlc.com has great head gear and post mastectomy gear...drain holders..All kinds of stuff. Good sale prices too! They do accept insurance for wigs to with a prescription.

DorMac

Today is my 2 year cancerversary (I count it from the date of my last chemo treatment). Everything is going fine and my onc has already moved me to 1 year appointments and yearly mammograms. For my peace of mind, I pay to get an annual MRI 'cause tnbc is just too aggressive and, if it comes back, I want to catch it early again!

I read the posts here everyday and wish all of you the best of luck in dealing with this damn disease. I hope everyone who is going through treatment has an easy time of it with little or no SE. It is really great to hear from sisters who have hit or surpassed the five year mark - congratulations to you and keep it going!

Doreen

Cocker_Spaniel

So cute