Calling all TNs

marial

I just wanted to introduce myself to this thread..I was diagnosed on 12/15/10 with TNBC, Stage IIa, Grade 3, 3mm tumor, no lymph node involvement.  So far treatment has included R mast on 12/21 followed by chemo starting on 1/20.  Have completed 4 rounds of DD AC, and am currently on my 6th week of 12 weekly taxol. ...and must admit the whole TN thing freaks me out (not that the breast cancer thing doesnt!..just an added stress)

Titan

Hey Marial..well..if you are going to freak out you have come to the right place...sounds like you are doing aggressive treatment..good thing...and you are almost done with treatment....hang in there....ok..it will be over soon....

Speaking of freaking out..I have a mammo 2 weeks from 2day...plus onc and bs 2 days later.. I feel like I'm putting my life on hold until then...

Heidi..vertigo!  Yikes..nasty stuff...

Pamdo..woo hoo in the NED...!!

Actually my friend is 25 instead of 29..my bad...she has been through "H"... Chemo made her very ill so they had to wait a month or so to get her blood counts up to operate.  I just hope that this NED lasts for her...and for each and everyone one of us...and I mean you too Jenn3 and Paulding Mom..it can happen..

dlcw

Marial - welcome and so sorry you have a reason to be here.  I am more of a lurker than an active poster, but read here a lot (my family would say obsessively....).  I was dx in November 2010 and am just finishing a trial with surgery coming up in 2 weeks.  Am ready to get whatever is left out and know how well the trial worked.  I know the 'freaked out' feeling and have found lots of hope here in the stories of women with similar stage/size tumors as mine that are doing well.

For everyone else - I have a question - what did your docs tell you about bone mets symptoms?  I have lower back pain and the bones I can feel in the aching spot are sore to the touch when I press on them (at least it's painful when I press there and I can feel bones so I am thinking it's the bone that's sore - does that make sense?).  I am not scheduled to see the oncologist again until after surgery, which doesn't happen for 2 more weeks.  Not sure if I should try and get an appointment or not, but am driving myself crazy.  I didn't do anything unusual as far as physical activity so can't think of a reason I would have sore muscles....So, just wondering if anyone got any input on what to worry about re: symptoms in bones.

dlcw

riley702

Had my 3-month checkup with my surgeon this morning.

About 2 weeks ago, I noticed a BB-sized bump/lump on the incision scar. I was freaking out a little, but knew I had this appointment coming up, so I waited. I was pleased that my doctor took it very seriously and immediately pulled in the ultrasound to have a look at it. And it's just a bubble of fluid trapped in the scar tissue. He said it was likely from the accumulation of fluid (seroma) that had been under the skin just after surgery and that had taken nearly a month to completely reabsorb. He said it may eventually reabsorb or not, but it was nothing to worry about. Yay!

I don't want to turn into a complete Nervous Nellie, but every bump or pain tends to make me wonder if it's back. So, taking the advice of many fine ladies here, in the future, I'll wait 2 weeks before rushing to the doctor with something like this. It'll be my compromise between being vigilant and living in fear.

riley702

Looks like we cross-posted, dlcw! If it's going to be 2 weeks to surgery and the onc doesn't see you until after that, maybe it wouldn't hurt to just call and run it by them and see if they want you to come in prior to the surgery.

And my onc didn't tell me anything about what bone mets feel like.

JenC

Riley702 - I have the same thing around my insicion.  The first one I felt I freaked out but then when I felt small bumps all around the insicion line I calmed down.  Called my ps and he said that it was from the surgery (which was only on the 4th) and I have an appointment next week so he will check it out.  Scary stuff. 

riley702

It really is, Jen. I know we TNs have higher rates of recurrence, and earlier than the hormone-receptor + gals, so I feel like I have to really be on top of things in case this damned thing tries to come back. But constant fear is no way to live, either. Who knew the human body has so many unexplained lumps, bumps, and pains? I sure didn't. Hence, my compromise; if it's still bugging me after 2 weeks, call the doc and ask him to check it out.

dlcw

Riley702 and JenC - looks like we are all dealing with that fear of recurrence - I'm doing my best to remain logical but am struggling.  I like the 2 week idea, but I think I'm going to email my onc and see if she can see me before surgery...if not, then she's going to need to call in a refill to my Ativan prescription!

Riley702 - Glad to hear your lump was nothing to worry about and  JenC - I will be hoping that yours is the same.

dlcw

dciotti

So glad I found this site. Tomorrow will be the one year anniversary of my biopsy and the beginning of such a crazy year so I'm feeling a bit weird tonight. Very emotional but I can 't really explain it. I had a lumpectomy and 12 nodes removed, 6 rounds of the red devil cocktail, 35 radiation treatments and 10 lymphedema massage treatments which all finally ended last week. I would highly recommend the massage treatments if you feel any swelling at all...it was the best decision I made. It sucks that we are all here but at least we aren't alone. My new short curly, dark hair is quite comfortable and just might be my permanent style for a while! Thank you all for your posts...

riley702

Welcome, Deanna, and all the others who have joined us lately. Sorry you have to be here, but glad you found us. This site has saved my sanity many times, just by listening to the words of experience of those who've gone through this earlier. What a wonderful concept - tens of thousands of women with breast cancer just talking to each other! We know we all "get it" in a way others in our private lives can't.

GuyGirl

I remember the dr told me I would have bone pain occassionally from chemo and radiation,  after we are done with treatment.  If so how long.  The last three days I have a new pain and I didn't want to run to the dr in a panic.  It is not a constant throbbing, but I have noticed it over the past couple of days off and on and I don't remember doing anything that I think would cause the pain in that area.

tracie23

I have constant throbbing pain in my legs from hip to toe.... none of the pain relievers help me... I have a dr. appointment tomorrow so I am going to mention it,  I am sure they will tell me it's normal but there are times I can't even think straight the pain is so bad.I have had this for over 2 weeks. Before this pain I had severe muscle pain like I ran a marathon every day. I will let you know what they say.

Suze35

dlcw - my doctor hasn't talked to me about what to look for, but I can tell you that chemo played havoc with my bones, and I still have some issues.  I have been having pain in my left thigh and in my neck.  My PET scan on 4/4 was clear for any distant mets, so we chalk it up to chemo and other things.  But I would talk to your doctor anyway, be sure they know you are having some issues.  They can schedule you for a quick scan to check and make sure.  Peace of mind.

Riley - I'm so glad it turned out to be nothing!  I was a bit of a hypochondriac before cancer, now, well, it sucks. 

JenC - I hope it is nothing for you as well.  This sounds pretty common.

Deanna - welcome, although I am sorry you are here.  So happy to see you are done with treatment, that must feel awesome!  This is a great group, especially when you need to vent.  We understand in a way that most don't.

GuyGirl -  I think you can have issues from chemo and radiation for at least a year afterwards. As for the actual pain, I go by the 2-week rule - if it isn't gone in 2 weeks, check it out - and have found that works pretty well.  Nothing has lasted two weeks.  I do get occasional pains in various spots - my thigh, which comes and goes, and this past week, my neck has been stiff and sore.  If that doesn't let up in another week, I'll probably push for an x-ray even though my PET scan 3 weeks ago didn't show anything.  So if you are still noticing it in 2 weeks, I would let your doctor know.

Heidi - How are you feeling??  I hope you are doing okay.

GuyGirl

Thanks Suze 

Lynn18

Welcome Deanna, I am also at the one year mark.  What a year it has been.  All of my treatment is over but I feel like I face an endless line of doctor's appointments now . . .anyway, I hope you will find a lot of support here, I know I did. 

I hope everyone gets into their doctors to get those pesky pains resolved.  It's no fun having to worry about every ache, pain, or bump but I guess that's our life now. 

Towny

Dear everyone..

I have bone mets!! So I will tell you what it feels like...not much... a little stiffness. The only way I really knew this bad juju came back was I had a routine scan done. The PET scan found it I did not feel it until 2 weeks after the scan. Thank God I had a scan done and knew that I was not loosing my mind. If you are sore after chemo.. yep muscles bones yep that is common. Everything you are all talking about can be just because you are just out of treatment. Mine came back pretty quick!!! So get a PET scan as often as you can!! This is the only way they really know what the heck is going on. Sorry .. but mine was every 6 months. So I am glad we were doing it. Also before surgery you should absolutely get a PET scan so the docs know exactly what is going on.  I also got a bone scan before surgery... I have been scanned a lot. So make sure your doc is staying on top of it..!!! This is nothing to mess around with. I am doing fine .. I am on xeloda 2000 mg a day and getting rads for the area in my neck. It was all very small so this is doable and not the end of the world. Believe my 8 cm tumor was more serious than this stuff is now!!  But I understand how you all feel. This is scary. You as a patient must speak up and make sure they are listening!!! MY onc is great he sent me another onc because he did not know so much about TN!!! Ask for a CTC search .. this is a blood test for cancer tumor cell search!!! This is very good and will help your doc know if there is cancer in your blood very quickly.  MD Anderson does it and my onc does too.. ASK!!!! Do research!! everyone look up PARP inhibitors and be ready for the next step before it comes!!!

MBJ

Heidi:  I know that there is an easy antidote for Botox that completely reverses the effects-hoping they do this for you imediately!  Hugs!

Marial:  Welcome to the board and please do not lose heart.  After freaking out for about a year because I was TN, part of me is completely relieved that there are simple things we can do that don't require debilitating hormone stopping drugs like the triple positives!  Diet, excercise, chemo and surgery are our weapons and they are having great success with this!  The most immportant thing is to be pro-active with your care-ask lots of questions, do your research and listen to your gut on your  treatments!  You have found a great place to get support from others. Hugs!

Pamdo:  Yay!!!

MBJ

Towny:  So sorry you have mets but I am glad it is treatable!  I am so glad your dr's were vigilant with your scans, as I know many of us get nothing.  Were there no other symptoms then the pain you felt after the scan?

For those of you worried about aches and pains, my Onc told me anywhere you have had a prior injury in your body, no matter how long ago, this is usually where you are going to have constant pain from chemo.  I have found this to be true:  in my thumb that I broke over 30 years ago, the car accident I was in when I was just 14 where I fractured a bone now makes me limp (it has always been a sore point it's just worse now), also my neck where I have a few herniated disks.  It feels like I am now 90 years old sometimes.   

JenC

Towny:  Wishing you the best with the teatment of the mets.  That is just awful.  I dont get any scans and my onc said unless there is a reason to they dont do them so I call for every ach or pain.  I have pain in my thumb joints but was told it was nothing and could be arthritis but still cares me.  Hope you are doing well.

MBJ

JenC:  My thumbs won't even move and lock into place now-very weird!  I thought I was the only one with this!

minxie

Hi guys, been awhile since I checked in. Been very busy with a second job, a fall down some stairs, and a bit of a job stress-related breakdown - but feeling good now.

Saw the onc for the dreaded 6 month visit and all seems well... Like I thought, we are stopping Zometa since it seems to hold no benefits. I didn't want tumor markers drawn and he was fine with that. Overall, I'm feel great except for my back (work - mousing, plus the lat flap/mast did a job on EVERYTHING) and I keep gaining weight. I blame the anit-anxiety meds I'm on. Since I last saw my onc in October I've gained 9 lbs Not quite sure how to lose it - I'm motivated for awhile, then I feel myself getting fatter, and then I say the heck with it all and go eat some cake.

Hope you all are well, will try and catch up more in the next few weeks -

MBJ

minxie:  So sorry you are going through so much!  Join us on the TN Ten Pounds Take Off thread!

JenC

MBJ - my thumbs have been like this since about 1 month after chemo.  the joint hurts and the pop.  Sorry yours lock I have not had that happen, yet..:)

tracie23

My Onc won't do scans either....I can't afford them on my own.  I hope it's nothing.....

Kymn

My jaw locks now especially in the am. anyone else get this? Very weird.

Anonymous

I am really feeling bitchy and out of sorts today. Last night was awful. Couldn't even roll over in bed without dry-heaving from the vertigo. Had to cancel my massage but managed to do a program (observing) at the nature center this afternoon with my husband nearby in case I keeled over.

F*cking doctor--- left 2 messages at both his offices yesterday and he never returned either. Told him I appeared to be having a reaction to the Botox for my neck and needed help. Then, as if that wasn't bad enough, today I walked out of his office after waiting for an hour for my follow-up appointment for the procedure I had 12 days ago. I HATE WAITING IN GD DOCTORS OFFICE!!!

Did I mention I hate/resent waiting in a doctors office? I've been to this*sshole three times and each time waited 1-3 hours. For a f*cking osteopath (or whatever the f*ck he is..."pain management" and rehab  blah blah blah).

Well, I am done with that pr*ck. If I have another bout with this dreadful vertigo I will call my GP. At least she takes me seriously, unlike this other idiot. Guess I'll just have to live with no ROM in my neck to the left.

God I'm mad, and still slightly dizzy. Lawn still needs mowing though, so I guess I'll give it a try...new tractor.

Sugar77

Heidi - sorry to hear about your pain and the pain in the *ss doctors.  I'm sending you healing vibes!

Suze35

Heidi - wow, what a sh*tty experience!  I hope it gets better and that your PCP is able to help you. 

Towny - I am so sorry to hear about the mets, but it sounds like your doctors are very on top of things!  Because I am so high risk, I'll be getting PET scans every 6 months for the foreseeable future, or as needed.  My onc likes to stay on top of TN patients, she thinks that there is a benefit to catching it early for us.

I start my rads tomorrow - got confused and my dry-run was actually today!  I'm happy - one less day to have to wait!  One of my techs is a real cutie, he should make my days go fast . 

Titan

Umm.Marial..didn't I tell you that this is where we kinda rant alot?

Heidi..your doctor sounds like a a**h**le*.how are you feeling now?  

I know that from my experience with cancer..and doctors..lots of doctors..I really don't put up with crap anymore..I know that this is their "job" but sorry this is my life..and my mental stability (if I have any left)...I whine and whine until I get my answers..BS...they are getting paid tons of $$...

I seriously and I think you guys are the same..cannot wait patiently for a test result..I want to know NOW...

Titan

And MBJ..I agree with you about not having to deal with the Tamoxifin, Herceptin etc. side effects..I do hear that some ladies don't have a easy time with those...on the other hand..I do wish there were some tiny little pill that we TN's could take...I would at least like to try it.