Calling all TNs
Comments
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Hope everyone is having a great Memorial Day weekend...I'm just getting caught up with you all since Friday. Very interesting conversation going on...I had 4 ac, 4 taxol. plus 33 rads (5 boosts) and of course the lumpectomy first. Obviously with TN..if..I'm reading things correctly, it doesn't seem to matte a whole lot what size of tumor or nodal status..we get the big guns...back in March, 2009 this was the course of treatment I was given...was not offered any other choices...reading on here I feel that I was given pretty aggressive treatment..I'm thankful for that.
And Pamelajo...I love your posts..and your avator too! Awesome.
Silver lady..from reading your post..are you saying that your tumor grew 4 cm in 5 weeks?
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Hi all. I am 37 and was diagnosed in February. I had a thyroidectomy in January (no cancer just very hyperactive) and then found a small lump in February. I was diagnosed with TN, 2cm, stage 2a grade 3. BRAC negative. I had a lumpectomy in March with unclear margins and in-situ and had a mastectomy in April. On April 28, 2010 I started ACx4 and then Tx4. I have still not seen the radiologist yet so I am unsure if I will have to have radiation or not. I missed one week due to a stitch abses near my port so this comming wednesday will be round 3 of the AC. All in all it has been ok. Not much neauseau but fatigue and the neulasta shot this last round was pretty bad for about 30 hours the bone pain was awful. I cant believe how many people are TN. Scary. The only family history that I have is my grandfather's sister and my grandmother's sister who each had breast cancer other than that no one in my family has it. I lost my hair about 2 1/2 weeks after my first AC. I have two wigs and have worn one to work a few times but I also have some rally cute scarfs with a visor so when tied they look like hats but are very thin so they are great during the hot weather and I just really dont care at this point. I would rather be comfortable than fashionable.
I take two days off one for treatment and the next to sleep then back to work... Seems like alot of people are doing that. I guess it also keeps the mind occupied. Titan - Thanks for starting this tread....
I hope you all have a great holiday weekend.
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welcome, Jenc. I didn't see the radiologist until it was time for me to have the rads. My onlc had a review with me at the end of Taxol, and thats when everything was set up.
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Meece. that is what they told me to is that I would see the radiologist towards the end and go from there. My onc was 50/50 on whether I would have to have rads or not since they got clear margins with the mastectomy, only one lymphnode and a silicone implant instead of an expander?? This whole thing has been sooo confusing:)
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The rads can cause capsular contract over your implant and may cause further surgical intervention. I am not sure if there is the same issue with the expander or not.
I can totally relate to the confusion. My drs. told me very little and gave me 0 choices. They decided and that was just how it would be.
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Silverlady - It was my decision not to wear a wig, it just never felt right. I have one that looks exactly as my hair used to look, I just felt like I was "faking it". I wish I could have worn the wig at times, but it just felt odd........... I did hold onto it in case I had to take a picture for something at work, license (if I lost it) or something along those lines. Now that my hair is growing out I will be donating to the American Cancer Society.
I can't remember who asked about radiation, but I was told that if you had more than 3 positive nodes, radiation was suggested. I was initially told I did not need radiation, but after surgery and the final pathology reports, I was told I needed radiation based on the amount of nodes affected. Because of the radiation and the pace at which we were proceeding with surgery, the onc suggested I wait for reconstruction surgery. I was also told that because of the radiation, implants would not be the best option because of the tissue damage. At the time I questioned that decision, but am so glad I decided to wait because I'm realizing how important it is to feel comfortable with the PS and I can take my time "interviewing" reconstruction surgeons and decide when I'm ready. I also need a break from drs, surgeries and treatments - this is a grueling process.
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Thanks all for the posts!
Sugar77 - Yes I did have a bi-lateral mastecomy. So I guess that is why no rads for me, which is fine! ;-)
Yes it is good that we are getting the strong doses but I just hate how they make a person feel! The no hair thing is really starting to get to me now that summer has begun here in WI. The wig I have is really cute but so darn hot! I just can't seem to find cute scarves for me! Any suggestions!
Thanks and ((( Hugs ))) to all!
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kad - I had two wigs: a human hair one and a human/synthetic blend. They were both hot and heavy because I had long hair and bought them to look like my old hair. Anyway, I paid a lot of money for them and wore them only a handful of times each. I bought a short Raquel Welch wig on eBay for $25.00 and loved it. I wore it all the time and it was short, light, comfortable and stylish.
Sherri
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Happy Memorial Day, everyone! I'm catching up on the reading from being gone for a few days.
I bought a wig, had a stylist work on it for me, but I felt fake wearing it, and it was uncomfortable and was afraid of it moving around on me. I would wear scarves, until about a month ago where I have been going topless. Now that my hair is growing in, mostly gray and sticking straight out, I have been getting compliments on my summer hairstyle. I just say thanks. Those who know me just say I'm lucky for having a nice shaped head where I can get away with very little hair. My Dad has been shaving his head for over a year because he is balding, said he preferred me going topless rather than wearing scarves. He said the scarves made me look old. Funny.
Jen C and Jenn3- I had radiation with the Alloderm implant. I didn't have any problems at all. My Plastic Surgeon said with the Alloderm there is a low chance of capsular contracture, about 14%. I went with that because I wanted a double mastectomy and I didn't have enough belly to construct both breasts. I'm very happy with the results. The recovery time wasn't that bad, though the drains were no fun. I have two small children and needed to be up and moving around quickly.
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I was diagnosed last October with a 11.5 x 7 cm tumor but no node involvement at age 51. I had noticed it 1 month prior and it doubled in size by the time I had my mammogram. I had dose dense AC followed by dose dense Taxol. I had bilateral mast with sentinal node. Here is the miracle: I had a complete pathalogical response!! The AC reduced it by half and the Taxol took the rest in the 1st round. BRAC testing negative. My mom also had triple negative 5 years before me and my onc definitely thinks it is genetic. I will complete radiation on June 11th after 33 treatments (5 are boosts). My skin is fried and I am not looking forward to the next 2 weeks. My onc says that I am a rock star. I do not think they have had this large of a tumo disappear before.
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That's fantastic, tambilyn! You are a rock star!0
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Just scrolling through threads and read a comment that taxol was a milder chemo than taxotere and that TNs usually did better on taxotere rather than taxol. I realise that this is just a comment but has anyone heard anything? So many of us seem to have had taxol. Also were you given a choice? I just did what my onc said!!! (4xDD AC/T)
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Taxotere was in the clinical drug trial I was offered. I didn't know anything about chemo at the time and didn't even know there was Taxol, too.
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I'm not sure which is milder but it seems a lot of woman have reactions to Taxotrere but then I hear about neuropathy with Taxol so I don't know...
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I was Dx 9/09 at age 53 with bilat BC. Left breast triple neg, 2.5cm tumor, ductal. Right breast is hormone positive, 1.5cm tumor, lobular. I found both lumps myself. Having yearly mammos since age 40. Last mammo was clean, yet I found both lumps 6 mos after clean mammo. Had bilat MX with immediate recon(tissue expanders) 11/09. No lymph node involvement. BRCA negative. No family history of BC. Had 4 dose dense AC, then 4 dose dense Taxol. No rads. Finished chemo 3/24/10. Had implant exchange surgery 5/5/10. On Femara for next 5yrs for the hormone positive cancer. What alarmed me the most about triple neg was that my tumor was 1.5 cm at the time of the biopsy and 2.5 cm at time of MX(less than 2 months). It grew so fast!! Just glad those suckers are out of me!.
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I was diagnosed in October of 2009 at the age fo 42, and just finished my last radiation treatment last Thursday.
I too found my tumor, and had intermittant breast pain at the tumor site (4.5 cm.) prior to diagnosis. I bought into the "breast cancer doesn't present as pain" belief system which I would like to help change!! I became used to the stabbing pains, and had a mammo three years earlier due to the same symptoms and had been cleared after a re-check. Then I forgot about my boobs while dealing with a host of other medical issues. Now I don't have my original boobs as I elected for a bi-lateral as I needed a mastectomy. But, I also have learned how fast our tumors can grow, so I don't beat myself up over the lapse in time in mammos...
I ended up getting my expanders at surgery, but found out later that I only had a 1 mm margin of clearance from the chest wall, and they were recommending radiation. I grappled with it, but went ahead with radiation and managed to swim which was so important for my mental health. I had a pretty rough chemo, and also had a tough bout of cellulitis on the elective side. All in all I was out of the water for a long six months after diagnosis.
I have started back to work part time, and have 15 of the 35 extra pounds off that I gained during treatment. (lovely)
I see the Psychiatrist weekly as part of a pilot program with the Breast Care Center, and I attend our weekly support groups. I still have days where I feel like I was hit by a truck, and deal with chronic pain and cannot bend my hands in the morning (neuropathy I think.) My reconstruction has been put off for approx 6 months post radiation (cannot wait!)
Life can be quite a struggle at times, but I am proud of the fact that I made it through what I did. I used to say I would never have chemo or be bald, and I have gone through both. My new motto should be I will never win the powerball.
I look fowards to being able to give back in the future...it would mean the world to me.
I am also intrigued with this news regarding a future vaccine...and mostly wondering if we TN's would be included....does anyone know?
Thanks for asking us to share our stories, it's nice not to be alone in this!!
traci
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Kad22,
I bought some really cute hats and scarfs at www.tlcdirect.org. I love the scarfs that have a visor so when you tie them they look like a hat but are very thin and are not as hot as a regular hat. Hope you all had a great holiday weekend and are having little SE's.
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Traci, that is funny about the Powerball.
I vowed I would cut my hair and no longer have long hair after forty. When you don't have any, you appreciate the ability to grow it, and now at 47 I have long
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I went hatless/scarfless today when I went out shopping. Aside from my nail tech, who is excited to become my hairstylist someday soon, no one batted an eye. As far as lightweight headcoverings, you might look into tichels. I got some on coveryourhair.com I find they breathe better than some head coverings, and they were inexpensive. I like my wig, but it's hot.
Trace--You mentioned problems with your hands. The bones in my hands hurt, and my fingers are stiff. Is that what you are experiencing? I've been told it will go away, but I'm skeptical.
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Meece,
I bet it's beautiful! Mine used to be long too...when I cut it in stages before chemo, I ended up with a pixie that everyone liked...I may keep it there, but I know what you mean, I miss my long hair. I was missing it tonight after I swam, and I was in the locker room and I swear this little girl asked her mom if i was a boy. I was like...Traci, you gotta be strong, come on! But I was thrown off for a moment.
I am surprised at how slow my hair is growing, does anyone have any tips/sugggestions?
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yes, my fingers feel stiff and are particulary bad in the morning. I can only bend them half way when I wake up, and sometimes I have sharp shooting pains in my hands that wake me up. I also had pretty fierce toe/foot neuropathy with the nail bed changes etc... I take neurontin at night which was started by my pain MD prior to chemo and I really notice if I miss a dose.
I can see a "notch" on my finger nails too from when I started chemo, so I guess it's neuropathy. I have heard that with taxatere, this will most likely get better.
It's just that I expected to bounce back, and have sort of rolled since ending on March 11. But I am making strides
I hope yours gets better!! Do any of these symptoms sound like yours?
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Traci, I have been told that Biotin helps hair rowth, and I am sure you could find a lot of "Solutions" that may be just money making schemes for someone. It is sad when people take advantage of those who have been through BC to make a buck on snake oil. I was looking on another thread months ago, and someone was boasting about a product they used and how it grew her hair so quickly. So one member went to that website and found the exact wording this "BC Survivor" had used as tthe statement from the product's inventor. When she confronted the member on it, that member disappeared. Be wary.
I have also heard that just stimulating your scalp by washing it a bit longer can help.
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I bought most of my scarves from www.headcovers.com. I also bought some from www.planetbuff.com. I bought a wig but rarely wore it.
I used organic biotin shampoo when my hair started to sprout. Not sure if it helped but it didn't hurt!
Well, I'm coming up for air from my TE's (delayed recon) and ooph on 5/28. The ooph was easy, peasy... no issues at all. The TE implantation was pretty painful. I've stepped down to advil now with the occasional muscle relaxer and feel better but the 1st couple of days were rocky to say the least!
Hope everyone had a great holiday weekend.
xxoo
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Hi squidwitch...My hairdresser recommended Nioxin when my hair started growing in. I confess I didn't feel the need to use it because my hair grew in quickly and thick, although fine (my normal). I have seen women on other threads that have used this product and say they had good results. It might be worth a try. I think it's only sold in salons.
Anna
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My hairstylist says to put a drop of rosemary oil in with shampoo and let it sit to stimulate hair growth. Don't know, but I may try it. Right now, I don't need shampoo.
I bought from headcovers and planetbuff, too, but the tichels are lighter and about half the cost. I have a couple with shiny threads through them that are quite attractive.
My hands are really stiff, especially in the morning. My feet were swollen, and my PCP changed my bp med to add a diuretic, which helped, but now my left foot feels always on the verge of swelling--tingling and some numbness. Sure hopes this goes away. I'm 2 months out from my last chemo round.
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Hey, I'm triple negative too. I was diagnosed last June when I was 31. I had a painful lump and had that biopsied, ultrasounded, mammogrammed, MRIed.....and finally a diagnosis of triple negative metaplastic Stage 3 breast cancer. I had a partial mastectomy with negative nodes, FECx4, taxotere x4, 21 rads and here I am! I'm doing well - achy and tired at times but good considering.
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I am 39 years old Brazilian . Diagnosed last February. Had lumpectomy and 2 nodes removed. Nodes negative and lumpectomy margins were clear. Had 4 rounds of AC and have 4 of Taxol starting next week. I got 3 other Doctors opinion this past week. 2 out of 3 recommended that I have a bilateral mastectomy and ovaries removed because I am BRCA1 positive. The last doctor said we can wait and monitor it.If goes to the other breast than we can deal with it. I am confused and scared . What do you think? TNBC prognosis is not so good. I am a little discouraged. Help!
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TN prognosis is no different really statistically than other BC's if you catch it early. The only difference is there is no "after" treatment we can take to keep it from coming back like the hormone + girls.
BUT, all is not lost. TN is an aggressive fast growing cancer, and responds BETTER to chemo than our hormone+ sisters cancers. Chemo kills fast growing cells, thats why our hair falls out, but our lashes and eyebrows are last to go. Our nails grow faster during chemo....... why? They are made up of dead cells LOL and we are killing those at an alarming rate.
So...... don't go on thinking our prognosis isn't good. We've got just as good a chance as the next person.
Now.......where are the cookies, i'm finally starving.
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Welcome to the new kids to the tn club...and Monika..you listen to Pamelajo!
Pamela..I like your thinking about the dead cells...my nails grew and grew! I wondered why.
About the hair thing..I took biotin after chemo..also massaged my scalp (got my DH to do it too..he liked it)..anyway....I read somewhere to put aloe vera on the scalp too...not sure if all that worked but I have at least 4 inches of hair (had it trimmed twice)..I don't look anything like my avator now..more hair, different color and sadly about 15 more pounds..oh well..I'm working on it.
What kind of cookies are you having Pamelajo? My favorite is M&M...0 -
My nails grew so fast during chemo and I wondered why...wow, go figure!
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