Just diagnosed with LOTS of questions!

Txblueeyes

Hi friends!



This has been a crazy two months! Our house was smack in the middle of the Bastrop wildfires, but thankfully was spared! Most of our neighbors lost their homes, so we feel blessed! The night after the second visit to our home, while toxins were still thick in the air, I found a lump in my breast that just wasn't there a week earlier! On Oct. 10th, I was diagnosed with breast cancer and a couple of days later, heard the term "triple negative" for the first time. I am actually not a true TN, as my ER is positive, just very low - 3.4%. I had a lumpectomy done a week ago Tuesday, and the surgeon got clear margins all around the tumor. I ended up having 4 Sentinel nodes, and they were all clear. I had C/T and bone scans done earlier this week, and they were all clear. They put a port in during surgery, and I know they will recommend chemo, but am trying to find out if this is my only option, given that the cancer is T2 with no spreading to the nodes. I will definitely have radiation. Since TNBC is a fairly new term, I haven't been able to find anything about people who caught it at this stage, and whether or not they did chemo, and if not, are they still living to tell their story...that's why I am here. I have two precious 9 years old Russian Blessings, and I want to see them grow up! I am more scared of the chemo right now than the cancer, as I feel that the surgeon " got the cancer out", and am confused why I need chemo if it hasn't spread? I dated a wonderful man about 15 years ago that died from his chemo, not from his cancer. I guess right now, I feel like I have a greater chance of dying from the chemo than the cancer, since mine was caught early. I need advice...especially if anyone else has had a similar diagnosis. Thanks so very much!

TifJ

Hi TX! We are similar that I am TN, but with 3%ER+. I was scared to death when my doctor told me chemo was absolutely necessary. Chemo is the only tool TNs have against this beast. I had a mastectomy as I had more than 1 area affected. My doctor told me whether I had a lumpectomy or mastectomy, I would need chemo. I did 4 rounds of Taxotere and Cytoxan. It was not fun, but not near as bad as I thought it would be. The worst for me was losing my hair, but 10 months after my last chemo I have a full head of hair. I started going without a hat or wig at 5 months out. I could have done it sooner, but I am a bit vain!

I have a 9 and a 6 year old and managed just fine with help from my husband and a few friends!

Chemo is designed to "mop up" any cancer cells that may have gotten away from the original tumor.

Please let me know if you have any questions. Also, please come visit the "Calling All TNS" thread. Lots of good info and great ladies- several new ones too, that are in your shoes right now!

Suze35

Txblueyes - you didn't say how big the tumor was, but I know they recommend chemo for TN tumors larger than 5 mm (0.5 cm). TN is more aggressive, and lymph node status is less a prognosticator as it is for ER+ - essentially, TN has more of a tendency to metastisize even when nodes aren't involved. Don't get me wrong - node negative is a good thing, just not quite the same as for ER+. Your ER % is very low, and most doctors consider that a true TN.



There are other things to consider - did your tumor have lymphovascular invasion? Was it larger than 0.5 cm?



Being earlier stage, I don't think you would be facing the full assault of AC+T, my guess is the recommended regimen would not be as harsh.



It is important to understand that our first shot at this is the BEST shot. And most TNs respond very favorably to the chemo. There are many drugs now to help with SEs, and doctors monitor you closely for any issues you may have.



I would recommend hearing your doctor out and getting a second opinion. Good luck to you.

Luah

TX - What Suze said. While the prospect of chemo is very scary, there are medications to control side effects and most women feel reasonably well except for a few days following treatment. I did the "full assault" that Suze mentions, and I continued to work, exercise, go out with my friends, even ski most weekends. Everyone is different with respect to side effects, but please be assured that chemo, if recommended, is very doable - and they will watch you closely to control for any adverse effects.   

Ricki13

Hi TX

 I wouldn't wish this disease on anyone and no one here is going to tell you that chemo is easy, but it's a manageable albeit unpleasant process.  Yes, you will lose your hair and some days feel as gross as a person can....but in the end, it's the best way to 'mop up' any cells that may be hiding somewhere, unable to be seen through scans etc.  Thats how my oncologist described it...'mopping up'. With your prognosis there's every reason to believe you can then go on to live a long and happy life.

el-jaye

Hi Txblueeyes- I had my first chemo this morning- it was not as bad as I had feared.  I have  wonderful medical team helping me and my family is here to support me.  I have my arsenal of helps for any nausea or other side effects that may come up. 

As weird as this sounds, I am glad to get the chemo started, I want to be sure to hit this cancer with everything I can as soon as I can!!  I will be following up with Radiation in the new year.

 I wish you all the best!

LindaKR

Chemo has come a long way in the last 20 years, I was really frightened, as I had watched my mother-in-law go through it back then and it was not good.  Now they are better at controlling the side effects.  They give you drugs so that you won't have an allergic reaction and drugs to control any nausea or other intestinal side effects, drugs that help rebuild your blood counts, and the list goes on.  Though it wasn't the most fun I'd ever had, it wasn't near as bad as I expected.  I had some of the more rare side effects, but it was very doable.  Personally, I'm more afraid of the cancer recurring then the side effects of the treatments.  Good luck.

yellowdoglady

Please hear these ladies.  I did what was recommended, and it went quite smoothly.  I was able to work through it all with a day or two off here and there, and my course was 18 weeks of chemo and 35 days of radiation.  It won't send you to bed for months.  It will make you feel like shit from time to time, but not for long.  It will give you a chance to live a normal life afterward.  And most of us do just that.  For TNBC, this is your best chance.  Consider it. 

ma111

Triple negative is an aggressive and comes back more often then the others. Chemo drops the rate at which it comes back. If you are pre menopausal it is more important to do chemo prevention.

Reality

I am also TN - I had a 3.2 cm tumor that shrunk 90 percent due to AC and Taxol. I recently had a lumpectomy. In spite of the good news about the tumor size, my path report states that I only responded molderately to chemo because my tumor still had active cancer cells in it. I am glad I made the choice to have chemo, in spite of the moderate response as I am hoping the chemo also shrunk or elimiated any cancer cells that may have traveled to other parts of my body. I am starting radiation next week - I am not so sure about that. Although I am very apprehensive about damaging other parts of my body with rads, I do not want to risk a 40% recurrence rate in the same breast without radiation...Following rads, I will participate in a research study I was invited to join, due to my "incomplete response" to chemo - I will take daily oral chemo for 16 weeks in hopes that it will keep my cancer from recurring in my breast and/or other parts of my body.

Chemo and rads - that's our best chance from what I have learned...

Sher 

echo-on-the-lake

Hi TX---I totally agree with all the other posters about how important it is for triple negs to have the chemo. The chemo for your stage I diagnosis is not as fierce as those with higher stages. It is quite doable. I, too, had a 2 cm tumor with no lympy node or vasular invasion.

You mentioned that a former friend of yours died from his chemo, rather than the cancer.  First off, that was 15 yrs ago.....so much research has been done since then and better drugs have been created.  Also you didn't mention what type of cancer he had.  Different types will require different drugs.  He might have been on a drug that they may or may not have known would cause damage to his other organs. More than likely those drugs would not even be prescribed for you. That's really important to remember!

Secondly, I would strongly recommend that you avoid taking the chemo drug Adriamycin.  Research has shown that it is a very potent drug that causes serious heart problems in patients as much as 10 yrs later!  In your early stage, you probably don't need to add that drug.  My oncologist will not even prescribe it for a Stage 3 or 4 because of the side effects of it.  She says there are other just as effective drugs to take that don't run the high risk of damage to your heart.

I only had the T/C and just had mild side effects which the meds took care of.  It seems that a lot of women who had a rough time with the chemo had the Adriamycin.  I also had 33 rads with 5 boosts.

There are people posting on this board who where diagosed with TN as long ago as 9 yrs!  I'm sure there are a lot more that have lived much longer.  It's just that after you learn to 'move on with your life' you don't think to come back here to post!

Feel free to private message me if you want to talk more!

Susie

 

wrsmith2x

I agree with Susie that the TC chemo is very doable.  I swore if I ever got cancer that I would NEVER do chemo because its like trying to kill an ant with a hammer!  However, never say never.  When faced with my mortality it seemed like the thing to do.  And now I am cancer free and really not worse for wear!  I also agree to stay away from Adriamycin.  Nasty stuff - called the Red Devil - believe it. 

Whatever you choose to do I hope you have peace with your decision.  I pray that you will come thru this being only better for the Journey.  Namaste'.

yellowdoglady

echo,

The good docs have been watching the A drug for a while.  I was not offered it because it was too toxic and the added benefit would be 1%.  Instead I did more taxotare and cytoxin and an extra week of radiation.  And I worried at the time that I should not give up any possible thing, but I trusted my team.  They were right.  I'm still here three years later and appear to be as healthy as a person can be.

No one should fear treatment to cure them.  It is very easy to accommodate that.  Not so easy if you don't kill the rat bastard and it comes back on you soon after.  Bring out the heavy guns early and you may never need to think of it again.

   

      

Luah

I'm not sure any of us here can/should advise someone to stay away from one drug or another. Knowing evidence of effectiveness, many oncs prescribe adriamyacin for aggressive tumours in heart-healthy women. That said, new drugs are emerging all the time that may make A go the way of so many chemo drugs before it... but until then, don't rule it out if your docs recommend it. Do question them about why... what the risks are.... what alternatives exist and what their risks are... then decide.

mitymuffin

I second Luah's statement. Pick a doctor you trust, ask questions,  and then go with the treatment he/she recommends. I had Adriamycin (AC then T) and if I develop heart troubles 10 years from now because of it, well first, I'll be darn thankful to have lived 10 years!

yellowdoglady

Luah and mitymuffin,

I understand.  Many of us get by without the A because it is too harsh for us.  That's not to say someone else can't use it.  It's a matter of trusting your team to do what is best and doing your own research to know you agree with that.

Then again, if you are here, you are a proactive person to begin with.  I'm waiting to see the study that says that proactive TNBC people survive better.  I'm betting they do, but where is the funding to document that?     

star1dog

I am newly diagnosed with TNBC and doing very well with my chemo treatments. I too NEVer wanted to do chemo but i also want any chance to LIVE.! I have lost most of my hair but think i will not get a wig...from what i have learned TNC responds very well to chemotherapy...i try to laugh as much as i can. Good luck and God Bless You! We are strong women!

star1dog

I am newly diagnosed with TNBC and doing very well with my chemo treatments. I too NEVer wanted to do chemo but i also want any chance to LIVE.! I have lost most of my hair but think i will not get a wig...from what i have learned TNC responds very well to chemotherapy...i try to laugh as much as i can. Good luck and God Bless You! We are strong women!

Luah

star1dog: Welcome... good to hear you are tolerating the chemo so well. I was fortunate to carry on most of my normal activities, and looking back, the time flew by. It will for you too. Lots of women get by with scarves and hats - or simply go topless - I had a wig but used it mainly for work only. Wishing you well...

yellowdoglady

star1dog,

You can do just fine with or without backup hair.  I had it and never could bring myself to use it.  I figured that if it couldn't fool me, well, I couldn't look in the mirror.  Other women do just fine with that, and like that they can appear normal on the outside while they have issues on the inside.  It's everyone's choice, you know.  Some of us like to wear hair, some like to wear scarves.  It's all about what makes you comfortable in an uncomfortable time.  I liked the pretied bandanas because they were so incredibly easy, and I got up and went to work most every day during treatment.

Kick some butt out there, my friend!  Get it in your mind that you will survive. 

CharB22

I just got my pathology report today and I'm TNC. I've been reading that many of you have worked through your chemo. Did you have a port put in? Isn't your immune system compromised during chemo? I ask this because I work in the city and take public transportation - I could drive but parking is about $20/day, in addition to the $5 bridge toll. I also work for a large company -- about 4,000 people. I'm somewhat of a germaphobe to begin with. I'm trying to decide if I should go out on short term disability or try to work thru chemo.

My BS said I need radiation after chemo, too. I also asked him about getting an MRI - he said that an MRI this close to surgery (I had a lumpectomy on 12/9) would just confuse the MRI results. Anyone else ever hear of that? I trust my BS -- he was one of the pioneers of SNB at Fox Chase Caner Center in Philadelphia, so I feel good about what he's suggesting. He's also a 4 year cancer survivor of throat cancer, so he's extremely sympathetic of chemo -- he had it, too. I'm just trying to understand all this.

Anonymous

Char,

I am out on short term disability.  I had one month of full-time short term disability and now I am on intermittent leave.  My oncologist released me to go back to work 3-4 days a week for 4-6 hours a day.  My employer pays the hours worked and the disability insurance company pays the leave hours that I don't work.  I try to get as many work hours as possible and was very worried about how to manage that.  However, I've been ill with an infection and have been off more that I've worked.  My employer has been/is very understanding (much more than I am!). Navigating the whole leave/disability process is an experience!

I had a port implanted after my second chemo treatment and had it replaced a few weeks later because it wasn't working properly (evidently that's unusual).  I'm happy to have it now!

I live in a very small town, so my office is only 7 or 8 blocks from my home.  I don't have the issue of a long commute, parking or public transportation to deal with.  Others may be able to advise you on the public transportation issue.  It's also a very small office and my office is in the back so I'm not exposed to a lot of other people's germs.

My treatment is Taxol X 12 then FAC X 4 (one week on, 2 weeks off).  I have a consultation with my breast surgeon in January to discuss options for surgery after chemo. 

This is all just me and I'm still learning.  The other women on this board will have some great information for you!

Phyllis

christina1961

Char, I met a young woman at the cancer center who has an immune disorder. She has to wear a mask everywhere as her condition is chronic.  She had just completed an undergraduate degree at the local university.I had never met anyone before with this type of blood disorder and it was a real eye opener.  She has such a positive attitude but it must be really hard to have to follow those precautions for a lifetime and wear a mask for a lifetime, too= and answer the questions from people all the time..

Ask your doctor about riding the bus with a mask.  I had four months of chemo at the beginning of treatment and now after surgery and radiation I am getting another four months (I'm half finished) - my counts have only been low for about a week each time.  I try to wash my hands frequently, wear a mask and gloves most of the tme when I clean the litterbox, and during my low week I wash fruit with soapy water before eating.  The only time I've been sick is once from eating at a buffet. They gave me a super strong antibiotic and I was fine in a day or so.  My husband had a very bad head cold during this last chemo and I was scared to death of catching it just because I did not want to be sick on top of my feeling bad - but miraculously even though we share a bathroom (but not a bedroom right now) I didn't catch it.

I have my own business and have worked throughout but was able to take off time for a week following each chemo treatment (I had TAC the first time which is pretty rough) - this last time with the eribulin I have it on Friday and I'm going into the office today. I actually could have gone in yesterday but took it easy.  For me, though, if I don't work I don't earn anything and I have no reserves.  If I had had the option of disability I probably would have used it.

CharB22

Christina - when you say "your counts are low" - what does that mean exactly? Is your white blood cell count checked?

christina1961

Each week they check my white counts.

Kimberleyann

This forum caught my eye because my Mom has just been diagnosed and I have questions.  Her oncotype DX came back at 59.  First alarm bell.  Her gene reports were ER less than 3.7 (negative), PR less than 3.2 (negative), HER2 8.4 (negative according to their scale - the negative cut off is less than 10.7).

I am assuming this means my Mom is TN?  She had her CATscans and echocardiogram today.  She was on radiation therapy (X8 treatments) but that was discontinued yesterday when they received her results.  She has been told she will need to start on Chemo.  Her appt. with the oncologist is not until next Wednesday. 

I am trying to educate myself so I am able to offer the best support.  I live in Canada and my parents are in Florida.  I am a nurse and will probably go to be with her for her appointment.  I know so very little about breast cancer. 

My Mom is 76 but very active and healthy.  She had surgery and radiation for DCIS about 4 years ago.  The new tumour was in exactly the same place as the first one. 

I'm really weepy right now.  Any advice would be really appreciated. 

TifJ

Kimberleyann- come and check out the "Calling all TNS" thread. All of the great ladies there are triple negative and we can give you lots of info and tips for chemo and anything else!! It is under the Triple Negative topic.

Kimberleyann

Thank you!

Sugar77

Kimberleyann- yes check out the "Calling all TNS" thread as well as the thread for Canadian women called "The Canadian Connection...calling all canadian women."

yellowdoglady

CharB22,

I worked through it all except a few days here and there when I was "sleeping on the bathroom floor sick."  I was very careful to stay away from sick people while my immune system was turned off.  I went to the market at 7 or 8 p.m., when all the kiddies were at home.  It worked out great, as I never got sick during treatment.  I never had to postpone a treatment.  That is best.

Your mom can get well.