Calling all TNs

Luvmydobies

Ditto Nettie!!!

Allydp

Beth - hi, I'm also from Michigan, Hartland to be exact. I am so very sorry you're joining us, but this is a great group of women and wonderful place for support. I know things are a whirlwind right now, but it's great that your doctors are moving quickly so you can start blasting those cells. And I second the no googling. There's so much outdated info out there. Hugs. We're all here for you.  

Redporchlady

I was just diagnosed with TNBC but has not been staged yet because of how I found out I had cancer.  I was just in Mayo last week and had the normal mammogram, ultrasound and MRI.  Also had a chest X-ray and this week I am getting a brain MRI and a PET scan.  Port is going in and I start chemo next Monday..

Radical2Squared

Hi Redporch,

Sorry you are joining us but glad you're here! The staging of cancer is a little tricky. After my biopsy, I knew what GRADE my cancer was but not the stage. Friends and co-workers thought I meant STAGE 3 when I told them I had GRADE 3. To my surprise, rumors spread and pretty soon people were coming up to me and asking about my STAGE 3 cancer.

I did a separatee surgery to remove lymph nodes before doing any other treatments. That gave my doctors a pretty good idea of the stage of my cancer. The stage was not officially documented nor determined until my bmx where the doctors got to examine my tumors and breast tissue under a microscope etc.

To further confuse things, some doctors split the stages up too. One doctor might say stay 2...another will call it stage 2a. Right now stage isn't the focus. The best news is, your doctor's are moving fast! Your port is already in and chemo will start. It's going to be a crazy whirlwind, but I'm glad you found us and we're here for you!

anotherNYCGirl

Radical, - you already have appt for TE to implant switch? That's great!!

Did you have port removed?

  I had last taxol 6 days ago, - feeling achy still.    Taking tylenol (and ativan to sleep) but not yet today.  Maybe it's better now!

I am seeing PS on Oct 10, - I dont know if he can add to my expanders because the side that had radiation years ago seems stretched to the max.    I am not filled much, although the 'good' side could surely take a little more.    

Hope you and everyone here is enjoying this beautiful weekend!  (Well, it's beautiful here in NY, - hope it is the same where you are! )

ReadingMama

Hi, Hoping you girls can help me understand what are the common chemo's for TN?  I was always treated as if I was HER2+ as it was slightly positive, but now Its all TN.  I go see onc on Tuesday and trying to understand what is most common.  I already had 4 DD A/C and 4 DD Taxol + Herceptin.

Luvmydobies

Hi ladies, I posted a question in the Not diagnosed with Mets but Concerned forum. But I wanted to get some thoughts here as well. I've been having some issues in the vaginal area. Some slight on and off irritation and pelvic pain, bleeding, etc. I've had four urinalysis' which have come back negative. I had an endometrial biopsy but the guy didn't get enough tissue to sample, UGH! Things were better last week but today I'm having the bleeding again. I'm 38. The blood is mixed with clear discharge and mostly comes out when I use the bathroom. Sorry if TMI.  I'm hoping it's just my ovaries waking up and my period is just wonky. I finished chemo last August, had one light "period" this April and now the bleeding again. I have an appointment with my PCP tomorrow but do any of you know if it's common for TN to spread to the uterus?? I'm BRCA negative as well. The gyno and my PCP both did a pelvic and said everything looked and felt normal but I know that wouldn't tell much. I had a normal vaginal ultrasound in April but I have been an emotional wreck today! I'm literally terrified! Any thoughts are appreciated.

Cocker_Spaniel

Luvmydobies

No vaginal problem is too much information on here.  I can't help with the bleeding as I had a hysterectomy at age 32 but nevertheless any vaginal bleeding, soreness or discomfort needs to be addressed.  It may be the chemo upsetting your cycle even though it's over a year since finishing, or it may be your periods are starting to come back.  TN  does not spread to the uterus but if you were,  and you aren't BRAC 1 or 2,  then it could spread to the ovaries especially if you have a family history of this.  Don't go there unless you have to.  You have enough to worry about just getting through cancer and this may very well be a simple problem and easy to put right. Discuss it with your Gynaecologist again and explain your fear of this happening.  I hope you get some answers and the other ladies on here may be of more help than me.      

Dizzy222

luvmydobies. My understanding was that BCRA positive posed risks for ovarian cancer. Generally TN likes the liver, brain, lungs and bones. There are always other places it can set up shop but most likely given your young age you are healing. This worrying we do after treatment is crazy, but we all are doing it. Cyber hugs.

Luvmydobies

Cocker and Dizzy thanks for the replies. I did test negative for BRCA 1 and 2, so I thought that lowered the chance for spread to the ovaries? Is that wrong? I don't think there's a family history of ovarian cancer. Also if it were ovarian mets, would both doctors be able to feel any abnormalities during the pelvic exam? Both exams were normal. I will ask my PCP all of this tomorrow, but I just wondered if anyone knew? The only reason for the biopsy was I was in a panic. The doctor didn't think I needed one. He just said we could do it and in my panicky state of mind I told him to. All that pain of the biopsy for him not to get enough tissue to sample really sucks. Ugh! Thanks again! 

Coopdizzle

Infections sneak up like none other. I just came home from a few days stay at the hospital. I had an infection from the drain and on my skin. Fever is finally gone and the skin isn't as dark red as it was. Any tips on how to handle delayed reconstruction? I feel so ugly.

Radical2Squared

NYCgirl I didn't have a port....veins all the way baby! It has been beautiful here in NY though! Yesterday was almost 90 degrees. My cold chemo bones were loving it (as long as I stayed out of the sun).

Coopdizzle I went the summer starting with no breasts then being filled a tiny bit at a time so that I had bumps, then mounds...very funny looking and one was noticeably higher than the other. At first I wore baggy shirts and no bra. At the hottest part of the summer I gave up and started wearing regular tank tops (still no bra) and not caring what anyone thought of my weirdo breasts! 

There is a website (tlc.com) that I bought a cute lace camasol from (and a ton of other cancer related products). They have clothing designed to cover and alter the appearance of our chests. On the other hand....if you're looking for advice on accepting your temporary look for yourself....I have none. You're the only one who has to know about it, but it doesn't mean you'll like it.

Nettie1964

Sorry I'm way behind in this thread but I have a question...this is probably not the right place but here goes

Has anyone  ever had pain in their "shin"? (Fibula or tibia)

JAN69

Nettie - Sorry, no shin pain information for you.  Hope someone can help you out.

NavyMom - Are you making a Halloween costume for your little grandson?  (He's probably not so little anymore)  I'm back in the business for 5 of my grands.  The 2 boys want to be Captain America, so I'm recycling last year's Batmans.  Should be quick and easy.  Two of the 3 girls want to be Elsa from some current movie.  Other girl wants to be some kind of nameless princess in pink.  And my doll wants one just like it, thank you.  I won't see them until the 16th, so I'll take my sewing machine with me and hem things up that day.  Did I tell you I delivered 40+ lap quilts to The Painted Turtle this summer?  I want to make more but I want to do sewing for my self.  My cupboards are overflowing with fabric.  More than my life time allotment, I'm sure.  Cheers Jan

Allydp

Luvmydobies - I tend to think it's more likely that your periods are starting up again and things are just irregular, but I would still want to have the bleeding properly evaluated, especially since you also have pelvic pain. Is the pain your typically menstrual type cramping? Or more literal pelvic pain? I'm so sorry they didn't get enough tissue with the biopsy. I've had one before for infertility reasons and it was NOT fun. Maybe you could ask for a CT of your pelvis and abdomen and/or a transvaginal ultrasound. The ultrasound can quickly be done at your obgyn's office. I'm sure it will be clear and if the bleeding doesn't stop in a couple weeks, possibly do another biopsy, although I know the idea of that is beyond frustrating. Keep us posted. 

Coop - I'm so sorry to hear about the infection and hospital stay. Glad you're home now. I haven't personally dealt with delayed reconstruction, but I just had a BMX and have TE's in right now. There are moments when I I look at my breasts and feel pretty down. My PS has done a great job so far, but it's still quite a shock. I just keep telling myself it's temporary, and I try to focus on the fact that the cancer is gone and my risk is greatly decreased. Maybe you could head out to the mall and pick up a couple new tops and some cute scarves. There's so many different ways to wear a scarf that would fashionably conceal the area. Having a couple new outfits might be just the thing to give you some confidence back. But new clothes aside, please know you are a strong, courageous, beautiful woman! Breasts or no breasts! 

Nettie - the only time I've ever had shin pain was when I was playing tennis in college. I used to get horrible shin splints. Have you been doing any running or other heavy physical activity lately? 

I had an appt with my onc this morning and got the results of some recent scans which were clear. (Yay!) I realized as I was leaving the office that I am officially done with treatment. I have a couple additional surgeries yet to go, but as far as treatment, I'm done. Done, done, done! It definitely hasn't sunk in yet. My follow-up plan is alternating between my onc and BS every 3 months for 3 years, then every 6 months for 2 years, then yearly thereafter. No scans, no bloodwork. It took me a while, but I'm actually really okay with this. I think it'll be less stress in the long run. 

jenjenl

allydp  what a wonderful feeling

Luvmydobies

Ally, thanks for the thoughts. My doctor said she really didn't think an ultrasound was needed at this time. I had one in April and it was normal. She thinks it's my ovaries waking up and this is my period after being in chemopause. My nurse navigator said back in April to expect the unexpected. She said they could be light, heavy, last longer, come every few months or even more than once a month. So for now we are just monitoring. The doctor that performed the biopsy said since there wasn't endometrium tissue that he thought it was because the lining wasn't thick enough. My PCP thought the same thing and she said that was actually a good thing. She said the pain sounded like a functional cyst type pain. She said by all means if it stays wonky we can do an ultrasound later and perhaps another biopsy. I'd want to do the least invasive thing first though. That biopsy was painful! 

Anyway, big congrats on finishing treatments and everything!!!

Meadow

Ally thanking God your scans were clear. Do you still have the rib pain and any ideas what is causing it?

To all the Newbies, welcome

Radical2Squared

Nettie,

I get shin pain all the time now....feels just like bad shin splints but I think it's where my bone pain from the Taxol settles...

Nettie1964

Thanks for the replies. Ally glad your scans were clear.

My shin pain is only on one side and it continues to bother me even when I'm not standing. I have started walking, but it was hurting before and the walking doesn't make it worse.

Stupidboob

I have been having issues breathing for the past couple weeks.   I seen the oncologist and she is moving my pet scan up to next week to see if there is any cancer in the lungs, because of the high risk of it spreading there.   If there is no cancer (please pray there is not) then she will send me for pulmonary testing.   I have been trying to stay positive.

lilyrose53

Stupidboob,

Sorry you are having breathing issues.  I'm glad your onc is getting you a scan soon.  Waiting and worrying sucks.  I will be praying for you.  Think positive!

Luvmydobies, 

I'm voting for you getting your period back again.  That's the best scenario.  Our bodies have gone through so much with chemo, ect., it wouldn't surprise me if your body is just having a difficult time readjusting.  Hope you get some good news.

Ally,

So glad to hear your scans were clear! Yay!  I can't wait to be finished with treatment but it also scares me.  It must seem kinda weird to know you aren't going to be constantly going to the doctor!

I know I'm missing a bunch of you...but im so behind on reading these boards.  Just hoping you are all doing well.  My best to you all.  lilyrose

Stupidboob

Thanks Lilyrose.................and don't worry about being behind..............I stay behind and feel bad for missing stuff but for me sometimes it is to overwhelming. 

Best of luck to you.

Luvmydobies

Thanks LilyRose. Stupidboob you're in my prayers. Keep us posted please! Big HUG!! XOXO! Hopefully it's just asthma or something like that. 

Meadow

Ally saw on your other thread about the rib pain, all clear. So now just enjoy life! the good life

Stupidboob

Thank you Luvmydobies................:)

VerukaNY

Hi All-

I was diagnosed with tnbc at the end of May with a 1.2 cm mass on the inner quadrant of my left breast, deep in close to the chest wall.  I have since had a bmx and am almost done with ddAC+T- one last T to go.  And of course I'm super excited and freaking out that I won't be in active treatment all at the same time.

My question is this- my surgeon said she got good clean margins with the bmx, knowing I was worried about how close the mass was to the chest wall.  My onc says radiation is not indicated because I had a bmx and was node negative.....but I still worry because the mass was close to the chest wall, I just don't know how close or far or what the margin measurement was and it's not on my pathology.  

Have any of you been in a similar situation?  Has anyone gotten rads with a bmx and neg nodes?  If so, why?

I know I'm getting into crazy pants mode out of anxiety but just want to know I am being as proactive as possible.  I'm 43 and have a 4 year old and 20 month old at home and want to make sure I am doing all I can.  

Thanks for any advice you might have.

Stupidboob

VerukaNY    welcome to the group.   I don't normally chime in on things if I can't be positive but I wanted to share my story with you and then let you decide if you need a second opinion.   Sounds like our cancer was a lot alike and while I did have 3 nodes involved and you did not, I still felt it warrant me sharing.  My doctor got 2" clear margins, took out 15 lymph nodes and said that chemo should clear it up and while it could come back with anyone they never thought they would see it come back in me.   Well almost 2 years later it came back, up the lymph nodes on the chest wall and between my major and minor pectoral muscle so I had to have chemo again and radiation this time.   I am not telling you this to scare you, but so you can be well aware that it can happen so you can push for radiation if you want it.  I hope and pray you are a lucky one and it NEVER returns.    I hope you take this as the care I mean it as and not the scare it can be.   I would NEVER scare anyone on purpose.

 

 

 

 

 

redheeledwomen

Hi VerukaNY- I had almost the exact same diagnoses and surgery as you.  Because I had a BMX there is no need for radiation.  Had I selected a lumpectomy in my left breast only (where the cancer was actually located inner quadrant close to the chest wall) I would also need radiation.  I decided to be real aggressive and remove both breast to which the Surgeon removed all breast tissue clear up to my clavicle.  It was explained to me by the ONC that there is nothing to radiate.  All breast tissue (except nips) is gone.  And yes, I had to ask and get reassurance a few times before I was completely secure. 

If you're still uncomfortable about the info you are receiving, how about a second opinion?  I don't think there would be any harm in doing so just to be better informed.  Good luck to you and great question.

simplelife4real

Sadie....I'm hoping all is clear on your pet scan next week.  (((hugs)))