Calling all TNs

kelben

My decision whether to have lump. or mast. was based on the size of the lump.   the odds are still the same of it coming back, so because the surgeon said the lump that she would being taking out would be approx. the size of a baseball, I chose to have a mastectomy.  Having a mastectomy also made radiation unnecessary for me.  Just a little easier tx having chemo only, I would have had to travel over 2 hours one way or stay away from home for a length of time, so it was practically a no brainer for me.  Good luck with your choice.   The thing to do is have as much info. on both options and make your decision and then stick to it.

laurajane

Thank-you , all of you wonderful women for your congratulations. I'll be seeing my onc next Tues. to find out her game plan for me.

Beccad- surgery for me was a breeze compared to chemo. I hope it is for you also.

Titan- I'll look forward to celebrating your 2 yrs 3/20/11 and your 3 years 3/20/12. Do I start my countdown to 3 years today or last October?

Lynn- Thank-you for the Sweet Dreams wish.  I love those two little words, it's like a hug and I did indeed.

MBJ , Sugar and everyone else-  I had a fun time in NY but sadly wasted so much of it with unnecessary worry. I'm still fatigued from the chemo but getting stronger every day. It's been two weeks since my last chemo cocktail. I will be going back in March. On a positive note I did shop, shop and shop. Ate at some fabulous restaurants and went to a really cool gallery opening for a guy named Richard Butler from The Psychedelic Furs, and also went to hear Kevin Bacon and his brother sing at the City Winery. I went to the drawing studio and had a nice time sketching live models. I'm looking forward to getting busy working on landscape designs and getting my hands in the soil again.

Linda- You CAN do this. I believe it 100%

JLynn- I had very small B breast but the original goal was for the chemo to shrink my tumor and lumpectomy. My BS was adamant with me that a lump. was the better choice if that were an option. As it turned out, my tumor continued to grow on those chemos so I ended up with a mastectomy, because my cancer had invaded to my lymphs at surgery I will be getting radiation also. I hope to have some kind of reconstruction as soon as I get the OK after rads. Actually I'm hoping to end up a little more robust on both sides. LOL 

I'll be sending positive thoughts to all of you and hope everyone can find at least one thing to do this week-end that makes you smile and feel happy. 

cc4npg

Ok, I did post a new thread called "Lumpectomy vs. Mastectomy" and there is a very good post from Beesie on there regarding things to consider.  Her posts have always amazed me and I highly suggest anyone trying to determine which way is best for them to read it.  Her post is extremely informative!

Teka

Hi!

I enjoyed reading the posts on the new thread called "Lumpectomy vs. Mastectomy", which isn't just for TN's.   Does being a TN make a difference when choosing between L and M.   I've always found BC treatments to be a confusing maze.   I see very few posts on this thread from BC patients who aren't TN.   

cmksocal

Susan G - I used the cold caps and they worked very well.  I had 4 TC @ 3 weeks. I had thinning, but no bald spots.  I had a hair cut before chemo #4 because I couldn't see under my bangs.  There is a long thread on this site:  Cold Cap Users Past and Present to Save Your Hair.  Most of us rented our caps from Peguin Cold Caps in London, England.  And no one who did the Penguin Cold Caps went bald.  There is another vendor in the US and there is mixed results with those caps.

 Colleen

beetle25

Tif J - i had a dry cough throughout my chemo treatments and was told that I really didnt have anything to worry about. 

TifJ

Beetle- Thank you. Did it last for a while after chemo?

Titan

I had a lumpectomy because I could..size 36 B breasts..so not that small..plus my lump was visible..right next to the skin..upper right...the surgeon didn't have to dig much at all..it was right there...they thought it was bigger than it was so I had extra wide margins.

It's not like I like my breasts that much..it certainly wasn't that...I just hated the thought of all that surgery and the recovery time...My SIL went through hell..had a bilateral masectomy..they cut her a bit too close so she had a couple of surgeries to remove infection because the wound wouldn't heal, then after all that she had her recon, then had her fips put on..lots and lots of surgeries..I just thought..heck..if I can get away with just one surgery, very little recuperation time, for the same result..well why not.

I don't regret my decision...if I had decided on a masectomy I wouldn't have regretted that either..it is what it is...

Teka

Titan,

I went along with my surgeon and had a lumpectomy.   I didn't know that I was TN.   If I get a recurrence the girls are coming off.

Titan

Teka...agree with you!  The girls will go!

Anonymous

I was still in my scared and naive phase so never really considered a mx. However, like Titan, the thing I *really* wanted to avoid was the recovery time, especially given my active lifestyle.

Since lumpectomy w/rads = mastectomy ... that made it the procedure of choice for me.

Anonymous

 This had photos that didn't come through but I think you guys will still get a chuckle out of it:

MY NEW BOYFRIENDS!!!

I am seeing 5 gentlemen (give or take) every day!.

As soon as I wake up, Will Power helps me get out of bed.

Then I go to see John.

Then Charlie Horse comes along, & when he's here, he takes up a lot of my time & attention.

When he leaves, Arthur Ritis shows up & stays the rest of the day.   He doesn't like to stay in one place very long so he takes me from joint to joint.

After such a busy day, I'm really tired & very glad to go to bed with Ben Gay.

What a life!
Oh, yes, I'm also flirting with Al Zymer,
Or whatever his name is. I forget!

and I'm thinking of calling JACK DANIELS, JIM BEAM, JOSE CUERVO or JOHNNY WALKER to come over and keep me company.

Now remember:  Life is like a roll of toilet paper.....the closer it gets to the end, the faster it goes.  So have fun, think 'good thoughts' only, learn to laugh at yourself, and 'count your blessings.
 

lrr4993

My surgeon never really discussed a mastectomy with me.  She mentioned it as an option if I was BRCA positive - which I was not.  But other than that, not a word.  I does not matter because I would have chosen lumpectomy if a choice was discussed.

I later learned that my surgeon has pioneered several breast conserving procedures (SNB, and some sort of skin saving procedure), so maybe she just naturally gravitates to the least intrusive options.  

My onco is very conservative too.  In fact, she has had to do things she normally does not do to appease me . . . lol.  My first follow up with her is tuesday.  Looking forward to the "I am uncomfortable with no scans unless there are symptoms" approach. . . lol.  Hopefully she will be as accomodating with that as she has been with my other neurotic demands. 

Titan

Wow..Heidi..you are busy aren't you?

And about the recovery from the mast..I just couldn't take it..off work for SIX WEEKS!  I don't think so... My SIL thought I wouldn't be able to golf...I can still golf.....

Survivor2Be

Ladies,  I need your opinion.

I was diagnosed in 8/2010 with TN IDC.  I am 33 with no risk factors, BRCA neg.  It appears this tumor is particularly aggressive. I chose neoadjuvant chemo.  I took 4 rounds of AC every 3 weeks.  I ended up having to take a break due to insurance change and just got started on Taxol weekly X 12 doses.  The tumor grew from 2.5 cm to 3.1 now.  My onc says that if the tumor doesn't shrink by treatment #4 (i just finished 3 today), then we're gonna stop and do surgery.

Questions: for thoses that did neo: how soon did the tumor start to shrink?  Immediately, over a couple treatments?  Was it noticeable or only on MRI/US/mammo did it shrink?

FOr those that the tumor did not shrink, did you get a third round of chemo? What was your combo?

Second unrelated question: for those that choose reconstruction, how many were looking at reconstruction for a size D/DD and to keep that size?

Thanks so much for any feedback!  

Andrea 

Titan

Andrea...welcome to the tn thread...I believe Laura Jane was in the same position as you with the neo chemo...she will probably be along to help you but I think her first chemo didn't work so she had surgery and then she did a different cocktail..and she is now NED  Yay!

tnbcRuth

I had neo and the tumor shrunk noticeably within 3 weeks.  By the time I got to surgery 6 weeks later, there was necrotic tissue about 1/2 the original palpable size and 'no' cancer (<1mm from 2.5cm).  I only had one treatment but it was very strong as I was in a clinical trial testing dosage.  (avastin/taxotere) When I read your post, my feeling was concern.  Some tumors just don't respond to certain chemo drugs but do respond to others.  The choice is yours to direct the onc to what you want to do.  My personal opinion...I would try another chemo drug or go straight to surgery.  Is it correct that you have been doing chemo on and off for about 6 months??

SusanHG

cmksocal:  I just finished readng some of the posts about cold caps.  Sounds impressive and I think I would be a good candidate since I am in the grey area.  I think I would be doing TCx4 as well.  Wow, to live a life closer to normal during chemo would be amazing!

Anonymous

Hi TN Sisters!

I dropped off the map a few weeks ago when the brain thing started. I spent a lot of time waiting and sitting staring into space. I was still but my mind never stopped running.

There were many scans, some of them so high-tech that few hospitals have the machinery to do them. Luckily, my hospital is one that has all the bells and whistles. After being scanned in every which way and meeting with the chairmen of the neurology and otolaryngology depts. I was told have have a brain tumor.

BUT (and that's a big but) it is "the best kind of brain tumor to have" --- oooh lucky me!

It's a benign meningioma and I've probably had it for years. It is not cancer or related to bc. I will have to address it at some point because it is near my optic nerve on the left (my bc side) and could impair my vision as it grows. However, these tumors grow very, very slowly so I can move on to treating my bc and do another head MRI in 3 months to access the meningioma's growth. 

When I treat it, they will use radiation to kill it but leave it in there. Kind of icky, but better than having my skull cut open. I get to keep this tumor because it's the "good kind." LOL! (Sorry for my dark sense of humor but it is what's getting me through some of this)

Anyway, long story short: I start chemo on Thursday and am scared. I'm doing TC 4x every three weeks with the Neulasta shot the day after each infusion. Then rads.

My onc tells me this is the standard of care for my dx. I said I want as much as I need but she says this is what I need. I'm just worried about recurrence if I don't throw the book at this bc crap. Anyone else do the TCx4?

Also, any suggestions for how to prepare? I've been researching headwraps/scarf tying; signed up for the Look Good Feel Better program; am being fitted for a wig the day before 1st chemo and will cut my nails this weekend.

Anything else? Like, should I buy soups? Should I get special clothing for comfort? What over the counter meds should I stock up on?

I will take any suggestions you have!

Thank you, from one sassy but scared soon-to-be chemo girl.

 

Sugar77

Hi Michelle - I had TC x4 as well.  I finished a year ago and while it's no picnic, it's doable and you'll be through it before you know it! If you want any information about my experience with it, send me a PM and I'd be happy to share!

cc4npg

Andrea:  Kinda hope laurajane responds to your post.  Personally though, I'd get another opinion and if it wasn't shrinking, I'd say GET THIS THING OUTTA ME!  I know not all tumors respond to the same chemo.  Laurajane is a perfect example and hers grew while on chemo.  However they have since found a chemo she responds to and she's doing well!  Some other ladies will respond soon...

Michelle67:  I did TC x 4.  There is a thread called "Anyone on just taxotere and cytoxan?" that I advise you to read over.  There is also another one that just started up called "anyone beginning TC taxotere and cytoxan in Feb. 2011".  I did well with TC, and thankfully didn't have to have adriamycin, which I'm told is pretty hard to take.  I took the Look Good Feel Better class too, and it was nice.  They'll give you a scarf, and wig if you need one, and maybe a hat, as well as make up.  I didn't cut my nails.  I did get a wig, but never wore it!  Over the counter meds... you'll need something to soften stools!  And something to prevent diarrhea!  I took vitamins when I could during chemo.  Get some juices because water may taste yucky.  And DRINK LOTS during infusion and after infusion.  Get Aleve and Claritan.  Do not get Claritan D... just regular Claritan.  Taking Aleve and Claritan after Neulasta will help with bone pain (for which I never suffered even if I didn't take them... my skin just kinda hurt along my neck and back... kinda weird).  Clothing... can't really say much about that.. I was comfortable in whatever.  Check out those threads above though.. they'll help you A LOT!

cc4npg

Oh... I forgot... get tissues too.  You may have nose bleeds which is normal.  PM me if you want and I too will be happy to tell you my experiences or answer questions.

gillyone

Michelle - lots of stuff going on with you! I had a wig but hardly ever wore it. I almost lived off soup during chemo (AC/T) as nothing tasted good. You'll find as you on what works for you.

gillyone

I agree with the tissues - I didn't have nosebleeds, but had a permanently runny nose. Very annoying.

tnbcRuth

Michelle- you will get a lot of good advice by others more verbose than myself, but wanted to mention something that came up that I didn't handle well.  I couldn't drink enough fluids and dehydration caused a lot of problems and made me feel much worse.  You can get a saline infusion any time, and even get a rx for the hospital if its over the weekend.  You'll do fine !!

jenkwa2

Hello Everyone

I am have triple negative receptor breast cancer 4cm.  I recently received my BRCA results  I am negative.My treanment 4 cycles of AC every two weeks then Taxol for 12 weeks then surgery with radiation.I just had my second round of AC yesterday. With theTaxol should I expect the same level of fatigue? I work full time approx with driving time 12 hours a day when i get home i am really tired sometimes at work I have to catch myself.I know i should not have long hours but financially I can not afford at this point not to work full time.My employer is very understanding and knows my condition.I was hoping maybe someone else was in my position and had some advice.

Also I know my surgery is a little down  the road but I wanted to start preparing myself.I was thinking of possibly instead of a lumpectomy to have a bilateral mastectomy with reconstruction.I don't want the possibility of the cancer returning .Presently it has effected my left breast.

Anyone with similar concerns?

Luah

I\ve been away for a couple of days, and trying to catch up.

Laura jane:  So very happy to hear your news. After all you've been through, you deserve it!!

jenkwa2: Sorry you had to join us, but you will find lots of information, insight and inspiration from the ladies here.  I did 4 dd AC then 12 taxol. I found the taxol much easier to tolerate - I almost felt normal - and worked throughout. That said, everyone's different, and I know some on dd taxol have had painful neuropathy.  As for lump vs BMx, there is another thread on that subject. Whatever you decide, please know that even with a BMx, there is still a chance (albeit small) of the cancer returning.

lrr4993

michelle - I too did TCx4 and know many people here and few people outside of here that did it for stage 1 TN.  I think it is fairly common for stage 1.

I did really well on TC with few problems.  Here are my tips, most derived from others here:

Nails - use bags of ice or frozen peas on your fingers and toes during the taxotere infusion to prevent nail problems.

Mouth - eat ice chips during taxotere to prevent mouth sores/thrush.  

Drink tons of water the day of the infusion and for a few days after.  

Get Emend and Zofran for nausea . . . I was never even slightly nauseous. 

Zofran causes constipation - I took OTC colace while on the zofran and was "normal."  (sorry if TMI).

Hair - no way to prepare for that.  It sucks.  But a great wig makes a huge difference.  

I did not have the neulasta shot - never needed it.  It seems to me that it comes with its own set of SEs.  Hopefully others can offer help on that.

I know everyone is different, but I found TC to be surprisingly easy.  I worked fulltime the entire time.  The only days I missed were the infusion days.  I had one bad day which always fell on saturday - that day was like having mild case of the flu - some muscle aches and I slept a lot.

Good luck and feel free to PM if you have any specific questions. 

LRM216

Jenkwa2:

I did the 4 DD A/C and 1 taxol and was then changed to 3 more DD Taxotere (due to neuropathy).  I did not have an easy time with any of my chemo, and I personally found the Taxol/Taxotere to be far worse than the A/C - but I am still here and made it through a mess of things from the chemo.  I also wanted to add that I was 62 at diagnose (a young 62!) and was able to work throughout it all with the exception of the week I was hospitalized with febrile neutropenia (right after my first A/C) - and then only took thursdays off (day of infusion).  I wish you the best - and remember - it will end, I promise!

TifJ

Michelle- I too had 4 x TC. I used Biotene toothpaste and mouthwash everyday and never had a mouth sore. I tended to get diarreah vs. constipation. Immodium helped correct that. I never had the nail issues, but icing them seems like a good idea just in case. With tx 1 and 2 I usually felt icky days 4-7 then began to feel better. Tx 3 and 4 I felt icky days 2-6. Everyone is different. I am a stay at home Mom so I didn't have to worry about work, but I would say there were only a couple days each treatment where I felt really bad. I used Aleve for Neulasta pain and no issues with it. I wish the best- please don't hesitate to ask any questions!