Calling all TNs

Teka

susanella,

There're far more off-line TNBC patients.   Please don't make a decision based on any on-line posts.

susanella

Hi Teka,

Thanks so much for the encouragement.  My BS didn't seem to make a big deal about it other than to insist that I do the chemo and rads.  I will do whatever it takes. 

All the best,

Susanella

Titan

And Susanella..alot of we/us (which is right?)...tn's have had lumpectomies.....there are sooo many  factors that come into play with the decision to have a lumpectomy or masectomy.  don't base it on the fact that you are tn...talk to your onc and see if he/she will give you an opinion on which way to go...

And I think ..reading on here..that it is still possible to have recon even after rads..(pls..someone correct me if I'm wrong)...I think that yes..there may be some issues...but I think it can be done..check it out with a plastic surgeon.

swiftbird

Susanella, I agree with everyone here -- I would talk these issues through with your onc and surgical team.  Some of us had chemo prior to surgery, some after.  I had a lumpectomy; my BRAC test came back negative for either BRAC but still had a wierd "genetic variance of inconclusive" something-other.  I was at Mayo, started off 8+cm, and they felt I was fine w chemo prior, lumpectomy and some serious radiation therapy. Had my BRAC came back different, I probably would've gone for bilateral. But...like Teka said, there's some good ancedotal info here, and a fabulous place for support and info on day to day coping and info on side effects and other issues... but your medical team is best.  We're all so different. 

 Swannny, woohoo! I just had my second 6month series and came back clear. *whew* the weeks leading up to it though, I was a nervous wreck.  I hope it gets better.... I know I'll always get nervous but hope I learn to cope better as the years (and decades!) go by!! 

LauraJane and Suze, good to hear from you both.  I check back often and so many of us have you in our thoughts and prayers 

susanella

Hi Titan,

Thanks so much for the information.  I'm still in shock.  My dx was less than 4 weeks ago (Sept. 27), and since then I have consulted 3 BS, had an MRI, had a sentinal node and right lumpectomy, and am now scheduled for a re-excision on Friday. Quite a whirlwind for someone who considered herself "healthy" just 4 weeks ago!   I really appreciate the fact that there are other TNs who have had lumpectomies.  I don't want to be the guinea pig.  I have appointment with the med onco in mid-Nov.  I know I will be having at least 4 months of chemo followed by at least 3 weeks of rads.  Thanks again!

All the best,

Susanella (still in shock)

susanella

Swiftbird,

Thanks to you too!   I will try to stay positive.

All the best,

Susanella

Survivor2Be

If you read back through the posts, you will find that the decision for lump vs mastectomy to be a very personal decision. Based on statistics, there is very little difference in outcomes. However, many women choose the mastectomy based on personal reasons: reconstructive options, piece of mind. Whatever you choose, you must be comfortable with it because you must live with it! I'm 34 and my surgeon was leaning more for lumpectomy because most of the evidence goes to breast conservation. I choose bilat mastectomy so reconstruction would be even. It was a good decision for me bacuase now I won't think there was something more I could have done. My thoughts are with you!

Survivor2Be

Previous post was for Susanella!

riley702

Susanella, it might be helpful if your doctors could help you to draw up a list of what your choices are and the pros and cons of each. If you had a MX, could you avoid radiation? That could affect your reconstruction options. On the other hand, if the lumpectomy doesn't leave you too lop-sided, you may not have to worry about recon (or you might decide to have the other breast reduced/lifted to match your lumpectomy side).

I was told I should wait 18 mos or more after finishing rads before recon, to give my skin time to repair itself as much as possible, which will increase your chances of a better result. Some surgeons have put tissue expanders in prior to rads, or suggested post-rad surgeries that use your own fat and skin for reconstruction (like a DIEP procedure) to avoid dealing with implants and rads-damaged skin. Personally, I've decided against any recon.

What you need is more information, so you can make a decision you're comfortable with.

riley702

PS - My onc gave me no hint about being TN, either. I mean, he gave me the facts that my tumor wasn't responsive to ER, PR or HER2, but gave no indication that there was any significance to that, or used the term triple-negative. I only put that together here, as I was frantically trying to bring myself up to speed on this (how the hell could I have cancer? I felt fine!). Only when I asked him directly if I was a TN did he tell me I was. I'm still somewhat pissed at him for that, and it definitely affected my choices for treatment. Thank goodness I figured it out in time to make those decisions! I would never have forgiven him if his lack of info had limited my treatment decisions.

ksmatthews

Susanella, my dr told me that being TN isn't good or bad it just means we have to treat it different.  I believe him.  I had a lumpectomy and now my dr's tell me that a new study just came out and there is no difference in reoccurance for lump vs masectomy.  I agree with all the others though, talk with your dr's and make the decision for yourself.  Good luck!

Luah

Susanella: There are several factors that might lean one towards a Lx or Mx, but right now being TN is generally is not regarded (by oncs and BSs) as being one of them. Also, please know that most TNs do NOT recur!... also when TN does recur, it's more likely (compared with ER+ cancers) to do so distantly. While that's a sad fact, it's a risk that only chemo (and it seems exercise and low-fat diet) can fight - not your surgical choice, 

I am more than 2 years out now, with micromets in one node and isolated tumour cells in another. I plan to be around for a long time to come... and I'll bet you will be too!

  

Lovelyface

Suze, your advice was taken with a lot of thanks, I agree it is no point getting the Onco. score now.  I am very lucky that you responded with your wisdom, which I truly appreciate. 

Christina - My pathology report on a repeated test by a different hospital said that for ER the test for estrogen receptors is negative - there is 2+ nuclear staining in rare tumor cells, but in less than 1% of tumor cells.  Internal positive control is positive (not sure what this sentence means in the report).

For progesterone it is weakly positive, There is 2+ nuclear staining in 5% of tumor cells.  Internal positive control is positive.

And I was negative for HER2.

By the way, I did dose dense, 4 X Adrimycin, every two weeks, and then 4 X Taxol every two weeks.  My first oncologist treated me as a Tripple negative.  My second Oncologist at the same Onco. group, said, he will twist my arm if I don't take the drug which they give to people who are positive with ER.  He said for any little positivity of either of the two hormones, they give the anti-hormone therapy, as per guidelines. I couldn't tolerate it at all, so did not take it.

mccrimmon324

Morning Ladies,

This is probably one of the strangest questions posted but I was wondering if any of you had snoring issues while going thru or just finishing up chemo.  My poor DH had to sleep in the guest room again last night.  My snoring is out of control, I don't know what to do, I did snore a little prior to all of this but nothing like now.  I wake myself all the time and DH calls me his motorboat.  Anyway didn't know if maybe it had to do with lack of nose hair or something? 

Hope everyone is doing well and has a great week.

Kymn

Hi ladies, so sorry I have been away for so very long, I really was just trying to take care of my kids and breath....things still arent resolved, he has been extremely cruel, no mention ever of how I am feeling or how the kids are doing...I just dont understand the cruelty of some. Anyhow I wanted to pop on and say hi and that I have thought of you all often just didnt have it in me to come on and think of things to talk about other than my breaking heart, which 6 weeks later still is. Its at the lawyer stage so I guess I will just have to wait and see what happens, really hoping the children and I get to stay in our home as they have certainly been through enough with mom having cancer and step dad leaving. I cant wait for 2011 to be over. So here is where my hair is at now 3 1?2 months PFC....funny I never even get a chance to think about fn cancer anymore sure hope this stress doesnt bring that rat bastard back

hugs to you all

Kymn

TifJ

Kymn- so nice to hear from you. I can't believe what your husband is putting you through. He deserves a good kick in the nuts! You are absolutely beautiful and will have no trouble finding a good man someday! This is the place to vent- BC related or not!!

kathyrnn

LRM- thank you, I was asking about the breast MRI. It may be another example of miscommunication with my onc., but when she said there would be no "follow up testing" I didn't think to question her about the breast MRI.



Heidi- thank you very much for the link.



Suzabelle, sorry that you had to join the group, but you'll find these ladies to be an excellent source of both info and support. I had my chemo first and am having my LX IN 2'weeks,'so I can't really offer advice. I went with the LX because the BS thought it was the best choice, even after I made it clear to her that I would have no problem with the MX if she thought that was best.



Kymm- *direct dials devil .....reserves a special place in hell for your husband*



Suze, can you do me a favor next time you go for chemo? Would you as for Michael Comeau ( was my nurse) and tell him his flashmob bellydancing patient sends him a kiss. I also want you to meet him, he gave me wonderful care and he's a great resource if you run into problems.

minxie

Kymn - I know you probably hear this a lot - and I've said it myself often, just to make people feel better about having lost their hair - BUT - you look SOOOO amazing with that haircut! Like a model! I can totally see you rocking a leather trench coat and some nice high black boots and looking like kickass movie star heroine. Your husband is such a fool. I hope 2012 bring much peace and healing to your life.

I have my 6 month onc appt tomorrow, argh, nerves... At least it's early so I can get it over with.

If anyone is looking for something to read - I suggest "The Emperor of all Maladies" a FANTASTIC and well written book on the history of cancer - its treatment throughoout the ages, information about the biology of cancer, all written so that a non-scientifically inclined artist like me can understand it. I now understand cancer, particularly breast cancer, so much better now. Put it on your Amazon wish list for the holidays!

Fighter_34

Thanks Minxie I read a lot during the winter!!!

Paintingmywaythru

Minxie...Yes it is a fabulous book...a great read

Kymm...So sorry things have gone as they have. Your hair looks so great. I am hoping you have a good lawyer and keept he house so no one has to deal with anymore changes.

I am 6 1/2 weeks post fing chemo and no stray hairs are popping along. I am getting tired of my wig thing...sometimes it jsut dones't feel right. Ah well.

Suzabelle...you will get through this..this is a great site for support and wisdom. IT is quite a road you will travel and a journey that isn't so pleasant but there are absolutely wonderful women on this site and they will share with you everything they have learned.

I have found so much support and love here.

ksmatthews...I really like what your doctor said. A great perspective.

Found it funny that I am half way through rads and was asked to meet with the social worker today. Since I am a social worker I can be a little hard on them and I thought the rads are the easy part..the chemo and Rx is hell but here I am feeling I am getting stronger and trying to look forward and here she is doing her job telling me how exhausted I will feel and I must say rads are nothing compared to chemo so.....anyway....I let her do her thing and told her I got it covered via breastcancer.org and my friends but was glad they have her there.

Suze 35...keep resting in that nice chair...

Laura Jane..love your upbeat posts....

Nice thing that happened was that my son came home from college to go hear a rock and roll concert of a band I like so he and his friend he cmae hoem with and I and my  husband went to the Paradise Lounge and  heard Portugal the Man Saturday night....we may have been the oldest people there but we had a great time and my son was so cool about it and asked if we liked their newest songs.....

mags20487

Kymn...you are sooooo beautiful!!!  Just showed the pic to my DH of 25 yrs and he says  you have a gorgeous face and your ex is an A**hole!  Some people are just so wrapped up in themselves that when the attention is taken away they just don't cope well and lash out.  My sister is somewhat like that.  When i told her I needed a double mast she responded with "Well at least you do not have to have chemo and radiation"  Met with the Rad Onc today and as a matter of fact yes I do need both.  Selfish thoughts   God has a special place reserved for some.

Maggie

susanella

Hi,

Thank you so much Survivor2Be, Riley702, KSMatthew, and Luah for your prompt answers and encouragement.  I am just overwhelmed by going from "healthy" 4 weeks ago to a TN BC patient.  I am trying to be optimistic but it's difficult. I am going for a re-excision of the right lumpectomy on Friday, and hope I will feel better after that.  I am actually looking forward to starting the chemo because now I feel so helpless.  What is the usual follow up for a TN single side lumpectomy for mammograms, sonograms, etc.?  My BS said I will get a mammo of the right breast in 6 months and then again a bilateral mammo with sono at 1 year.  Since my cancer was picked up on a routine 1 year mammo, I think 1 year is too long to wait for the left breast.  Any advice?

Thanks again,

Susanella   

Lovelyface

Kymn - For sure there is a place in hell for him, no doubt.  He is accruing some really bad karma, every action has a reaction.  Yes, your hair looks amazing.  I was done with Chemo Dec. 28th, 2010, so I guess I am at least 6 months ahead of you, but my hair is nothing like yours. Yours is so stylish and looks really great.  I have curls all over and have never styled it.  Just growing it and growing it.  It doesn't tie a pony tail yet, and I truly hate to look at myself at this stage of my hair.

TifJ

Lovelyface- I'm with you- my last chemo was Dec. 30th 2010. I have a full head of hair, but it is a curly, sticking out everywhere mess. I try to dry it straight, but end up with the old lady football helmet hair! If mine was straight, i wouldn't hesitate to wear it short and sexy!!

LRM216

Kymn:

I know none of the words that we all write to you will ease the emotional and psychic pain he has caused you, I guarantee, he will kick himself in the ass one day for what he has walked away from, and you beautiful lady, will have moved on and will be with someone that truly deserves you.  Don't think for a moment it won't happen, it will, for sure - he's out there waiting for you, you just haven't met him yet.  Stay strong sweetheart, you will be the ultimate winner.  Your hair is adorable and suits you to a tee.  Keep that chin up - HIGH.

Hugs,

Linda

Sugar77

TifJ - mine was curly for the first year and is loosening up now 20 months after chemo. I've chosen to keep it short. I bought the Morroccan Oil curl cream and it helps with the frizz.  I gave up trying to blow dry it straight.

Anonymous

T e s t i c l e Therapy
 
Two women were playing golf.  One teed off and watched in horror as her ball headed directly toward a foursome of men playing the next hole.
 
The ball hit one of the men.
 
He immediately clasped his hands together at his groin, fell to the ground and proceeded to roll around in agony.
 
The woman rushed down to the man, and immediately began to apologize.  'Please allow me to help.  I'm a Physical Therapist and I know I could relieve your pain if you'd allow me, she told him.
 
'Oh, no, I'll be all right.  I'll be fine in a few minutes,' the man replied.  He was in obvious agony, lying in the fetal position, still clasping his hands at his groin.
 
At her persistence, however, he finally allowed her to help.
 
She gently took his hands away and laid them to the side, loosened his pants and put her hands inside.
 
She administered tender and artful massage for several long moments and asked, 'How does that feel'?
 
He replied: It feels great, but I think my thumb's still broken!

Titan

Kymn...seriously..you are beautiful ..your dick of an ex-dh is an idiot...I know that you are hurting right now....but really..time helps...try to remain calm if you can..you will get through this..

TifJ

Sugar- where do you get the Moroccan Oil stuff?

Sugar77

Hi - I live in Canada and it's available in lots of salons.  Here's link to learn more about it.  Perhaps you could check with some salons in your area:

http://www.moroccanoil.com/en/component/content/article/34.html