I have been dx for 10 wks and after setting up my surgery, the doctor left the practice and it's taking time to get another surgeon to be available. I had a surgical consult and it will take awhile to set the bilateral surgery up as they use 2 surgeons, 3 if I have reconstruction started.  She recommended chemo first because of the likely 4 week delay in surgery.

 

The surgeon, my oncologist and my primary MD are all urging me not to wait any longer and start chemo first now, which could start this week.  I had made my decision to have the primary tumor removed first as my strong preference, even having a bilateral mastectomy-now that's causing delays in treatment starting unless I go with a one sided mastectomy. 

 

The surgery will take 2-4 weeks to set up.  The oncologist says-CHEMO IS THE TREATMENT FOR TNBC-start this week.  No "surival rate" differences between chemo before or after surgery.  If I have surgery first, healing will delay chemo by 4-6 weeks.

 

I have to let the oncologist know by Tuesday what my decision is.  I do not want to delay treatment.  I also have put alot of my life on hold and is chemo THE treatment for us?  If so, I would try and switch my thinking. 

 

I trust the feedback on this site and it would help to get some answers so I can make my best decision...thanks and hugs,

 

 

 

 

 

J Clin Oncol. 2008 Feb 4;: 18250347 ( javascript:void%280%29 - P , javascript:void%280%29 - S , javascript:void%280%29 - G , javascript:void%280%29 - E , javascript:void%280%29 - B )

http://lib.bioinfo.pl/citwww/paper/18250347 - [Cited?]

http://lib.bioinfo.pl/pmid:18250347 - [My paper] http://lib.bioinfo.pl/auth:Liedtke,C - - Chafika Mazouni , http://lib.bioinfo.pl/auth:Hess,KR - - Fabrice André , http://lib.bioinfo.pl/auth:Tordai,A - - Jaime A Mejia , http://lib.bioinfo.pl/auth:Symmans,WF - - Ana M Gonzalez-Angulo , http://lib.bioinfo.pl/auth:Hennessy,B - - Marjorie Green , http://lib.bioinfo.pl/auth:Cristofanilli,M - - Gabriel N Hortobagyi , http://lib.bioinfo.pl/auth:Pusztai,L - Departments of Breast Medical Oncology, Biostatistics and Applied Mathematics, and Pathology, The University of Texas M.D. Anderson Cancer Center, Houston, TX; Department of Gynecology and Obstetrics, University of Münster, Münster, Germany; Department of Obstetrics and Gynecology, Marseille Public Hospital System, Marseille; and Breast Cancer Unit and Translational Research Unit UPRES03535, Institut Gustave Roussy, Villejuif, France.

PURPOSE: Triple-negative breast cancer (TNBC) is defined by the lack of estrogen receptor (ER), progesterone receptor (PR), and human epidermal growth factor receptor 2 (HER-2) expression. In this study, we compared response to neoadjuvant chemotherapy and survival between patients with TNBC and non-TNBC. PATIENTS AND METHODS: Analysis of a prospectively collected clinical database was performed. We included 1,118 patients who received neoadjuvant chemotherapy at M.D. Anderson Cancer Center for stage I-III breast cancer from 1985 to 2004 and for whom complete receptor information were available. Clinical and pathologic parameters, pathologic complete response rates (pCR), survival measurements, and organ-specific relapse rates were compared between patients with TNBC and non-TNBC. RESULTS: Two hundred fifty-five patients (23%) had TNBC. Patients with TNBC compared with non-TNBC had significantly higher pCR rates (22% v 11%; P =.034), but decreased 3-year progression-free survival rates (P <.0001) and 3-year overall survival (OS) rates (P <.0001). TNBC was associated with increased risk for visceral metastases (P =.0005), lower risk for bone recurrence (P =.027), and shorter postrecurrence survival (P <.0001). Recurrence and death rates were higher for TNBC only in the first 3 years. If pCR was achieved, patients with TNBC and non-TNBC had similar survival (P =.24). In contrast, patients with residual disease (RD) had worse OS if they had TNBC compared with non-TNBC (P <.0001). CONCLUSION: Patients with TNBC have increased pCR rates compared with non-TNBC, and those with pCR have excellent survival. However, patients with RD after neoadjuvant chemotherapy have significantly worse survival if they have TNBC compared with non-TNBC, particularly in the first 3 years.

Chemotherapy

Triple-negative tumors do not respond to endocrine agents or trastuzumab and can only be treated with chemotherapy. Fortunately, increasing evidence suggests that the triple-negative subgroup derives substantial and preferential benefit from chemotherapy. The Cancer and Leukemia Group B (CALGB) ^{javascript:newshowcontent%28active,references%29; - [6]} recently reviewed data from 3 randomized trials: 8541, investigating escalating dose intensity; 9344, exploring the addition of paclitaxel to the doxorubicin and cyclophosphamide (AC) backbone; and 9741, studying the impact of dose density. A combined analysis of over 6600 patients treated on these studies, stratified by HR status, demonstrated greater reductions in risk of recurrence for the HR-negative subset, translating into larger absolute benefits in both disease-free and overall survival.

The neoadjuvant setting also provides an opportunity to determine in vivo tumor responses to chemotherapy. The National Breast and Bowel Project (NSABP) B27 trial ^{javascript:newshowcontent%28active,references%29; - [7]} of neoadjuvant AC with neoadjuvant vs adjuvant taxane demonstrated a higher rate of pathologic complete response (pCR) in ER-negative rather than ER-positive tumors. Prospective analysis of outcomes after neoadjuvant chemotherapy stratified by molecular subtype has demonstrated that the "basal-like" group has a greater frequency of pCR compared with HR-positive/HER2-negative subgroups. ^{javascript:newshowcontent%28active,references%29; - [8,9]}

At the 2007 SABCS, several abstracts supported these findings. Four studies ^{javascript:newshowcontent%28active,references%29; - [10-13]} presented in poster format reported outcomes after exposure to neoadjuvant anthracycline ± taxane-containing regimens. In all 4 studies, pCR rates were significantly higher in the triple-negative subgroup compared with the HR-positive subgroups, with similarly high pCR rates in women with HER2-positive tumors. ^{javascript:newshowcontent%28active,references%29; - [10-12]} Among women with triple-negative tumors, the pCR rates were 23% to 36%. For trials with longer-term follow-up, inferior outcomes were observed among patients in the triple-negative group, especially in those with residual disease at surgery. ^{javascript:newshowcontent%28active,references%29; - [13]} Taken together, these outcomes demonstrate that not only is chemotherapy the primary choice of systemic therapy for triple-negative tumors, but it may also be a more efficacious choice.

With respect to the standard chemotherapy repertoire, some agents may be more effective than others in the treatment of triple-negative tumors. The newest chemotherapeutic agent available for treatment of metastatic breast cancer is ixabepilone, an epothilone analog. Epothilones bind tubulin, leading to stabilization of microtubules, cell cycle arrest, and subsequent apoptotic cell death; preclinical study has suggested activity in both taxane-sensitive and taxane-refractory tumors. ^{javascript:newshowcontent%28active,references%29; - [14]} In the primary phase 3 study leading to US Food and Drug Administration (FDA) approval, ^{javascript:newshowcontent%28active,references%29; - [15]} ixabepilone 40 mg/m² every 3 weeks plus capecitabine 2000 mg/m² were superior to capecitabine 2500 mg/m² monotherapy in 752 patients with anthracycline- and taxane-pretreated disease. A subgroup analysis was performed in the 25% of patients with triple-negative disease from the phase 3 study. In a group of 187 patients with triple-negative disease, ^{javascript:newshowcontent%28active,references%29; - [16]} response rate (RR) increased from 9% to 27% with the addition of ixabepilone to the capecitabine therapy, and progression-free survival (PFS) improved from 2.1 to 4.1 months (hazard ratio 0.68, 95% confidence interval 0.50-0.93). These relative improvements in RR and PFS were comparable to those seen in the study cohort as a whole, although the low RR of 9% with capecitabine monotherapy highlights the difficulty in treating this patient population. In the neoadjuvant setting, monotherapy with ixabepilone in patients with triple-negative tumors led to a pCR rate of 26%, comparable to that seen with other chemotherapeutics. ^{javascript:newshowcontent%28active,references%29; - [17]} Overall, ixabepilone appears to have reasonable activity in the triple-negative population.  If you have been offered neoadjuvant chemotherapy - before surgery - please consider this option at least you will know that it worked on your tumor....it is so much more scientific than me keeping my fingers crossed because they would not let me have neoadjuvant!

Love,

Connie

 

When I was diagnosed they originally said to have the surgery first and then chemo, but when all the info came back, TN and a second tumor they didn't give me a choice-started the chemo at 8:30 am THAT day right after my Dr.s appt. in fact!  When my BRCA test came back postive too it reaffirmed that we had done the right thing.  Plus...it was very reassuring to actually feel the lump shrink during the chemo. 

And..I know this may sound a bit strange but I loved having the extra time with my boobs.  Even though I was completely on board with the bilateral it helped me to truly come to terms with losing them.

 

Blessings,

Kara

http://www.cancernetwork.com/breast-cancer/article/10165/1341194 - http://www.cancernetwork.com/breast-cancer/article/10165/1341194

 

I hope you find your decisions soon Suzie.  There is a preferred cut off after diagnosis for receiving chemotherapy.

Best of luck in finding your answers.

 

Your numbers sound about right if I understand your sentence correctly.

 

Glad to hear the chemo is working for you.  Why this first before surgery?  I hope you do well and feel you're best these weeks and in between.

 

Did you have your nodes checked prior to chemo?  Is that best?  I hadn't thought about that issue.  I might or may not have positive nodes...they aren't sure. 

 

Again, it was to start treatment asap at this point and chemo was quicker.

Best to you too in the weeks to come.  Thank you very much.

Thanks for all the advice and encouragement. I am receiving neoadjuvant therapy. My oncologist thinks that this will be the best possible outcome for me. I started A/C on 3/20/09. I have chemo every other friday (Doctor wants bi-weekly instead of tri-weekly- says its more aggressive). I finish next friday with my A/C then move to taxotere for another 4 tx's. Hope this shrinks the sucker before I have surgery. I hate having this cancerous mass inside of me, but at the same time I understand why he is doing what he is doing. I feel this is in my best interest.

 

Let me know if any of you ladies out there have any advise for me since I am a newbie. I would love to hear from you.

 

I feel comfort in this website, knowing there are other women out there with this same type of tumor.

 

All the women in the breast cancer support groups all have triple positive and are all doing well with their tamoxifen and herceptin. I feel like a third wheel so to speak because I can't relate to their therapy like I can with you gals.

 

You are all in my thoughts, and prayers

Michelle

Hi! to all,

I am undergoing A/C for four tx's with next friday being my last of the A/C. Then I will be going to taxotere for four tx's.

 

Does anyone know how many tx's of chemo till one starts to feel the tumor shrinking?

 

Like I mentioned above I have already had three tx's of A/C, and I thought that my lymph node was down and I got all excited. Come to find out on my last visit with the oncologist  he said that he could still feel it and it was about 1cm in size. I'm not sure how big it was before I started chemo.

 

My breast tumor was 4.2cm, and I can't tell if there is any shrinking there either. I want to say yes, but I said yes to the lymph node and I was wrong.

 

Are there tests done throughout chemo or at the end of chemo to determine how well the chemo is going? I don't want to continue with chemo if this therapy isn't working. How does the doctor determine what is and isn't working for me?

 

If anyone has any insight into this I would love to hear from you. I am so scared in the fact that I am wondering if this is working at all for me or does my doctor need to take a different route. Maybe I am just being plain paranoid.

 

Thanks for all your help,

Michelle

I appreciate the feedback. You gals have been the best help to me since this whole mess started.

 

I was told by my oncology nurse that the taxotere seems to be less invasive for most people in terms of nausea/vomiting. She said that a lot of people experience neuropathy and problems with their nails. Has anyone had neuropathy from the taxotere?

 

I already get bone pain from the neulasta injection they give to me. I sure hope that I don't get neuropathy as well.

 

Any other advise or comments about this subject would be greatly appreciated.

 

Is taxotere and taxol the same thing?

 

Thanks for everything,

Michelle

 

Lori still has some neuropothy form the Taxotere and her last chemo was November 2007. She has found that the D3 has helped tremendously, and takes 5000 iu's a day. Lori did not have a problem with her nails, but did lose her eyelashes and brows 5 times. Many of the women have had nail problems, and especially our dear Heather. You might want to take a look at the chemo tips as to the care of your nails while taking Taxotere, as there are many great suggestions. The most important is keeping your nails clean and cut short.

 

The ground organic turmeric (a spice), is also excellent for reducing bone pain and inflammation. You use it in cooking daily,on salads and it is quite tasty,  and has been proven to aid in the fight against cancer. It is available in capsule form also, but the true form of ground turmeric root is the best. I have a link for this from the American Cancer Society. It has been used at MD Anderson along with chemo, but probably in pill form. You will need to talk to your onc about taking anything while on chemo, even though there are no studies that prove they will lessen the effects of chemo. They just say they don't know, so then the doctors say not to take anything.

 

I will get you a link as to the Taxol and Taxotere in just a bit. I have to get supper ready
Hugs,

Nancy

 

http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Turmeric.asp?sitearea=ETO - http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Turmeric.asp?sitearea=ETO

 

 

found it already

 

http://columbia-stmarys.com/Content.asp?PageID=P09424 - http://columbia-stmarys.com/Content.asp?PageID=P09424

 

Neuropathy is a fairly common side effect of the taxanes...I started having electric buzzing sensations in my legs and "creepy crawly" feelings in my thighs in January. I started on Lyrica 6 weeks ago and the sensations are almost gone.

 

I did not have any problems with my finger or toe nails, but my friend lost her toenails 6 months after chemo...they look normal now. She also recently started on something for neuropathy, she is a 5 year tnbc survivor.

 

Kathy

 

Since I have already set you a private message, I just wanted to welcome you to the site, and let you know that any suggestions or recommendations you may have for those just starting on this journey, will be greatly appreciated.

 

Reading your post, we can say it sure helps when "you know somone who knows someone".  Steve had just posted a thread as to the types of chemo the women here are/did have and was speaking of the Carboplatin, and that was apparently the drug of choice.

 

Again,welcome.

hugs,

Nancy

 

Well that's enough, I have a full day at work tomorrow.  Thank you agaih for all your support, and if there is any information you need from me, I would do anything I could to help.

 

Máire (that's not misspelled, it is the gaelic spelling of Mary.  Pronounced like Laura with an M)

 

Like the others have said, one of the advantages of neoadjuvant chemotherapy is that, if there is any cancer in the lymph nodes, then when they do the axillary dissection, at the time of the mastectomy or lumpectomy, there is less chance that your will have positive lymph nodes.  My MRIs, USs and physical examinations showed no evidence of nodal involvement at any time, though, and my sentinal node dissection was negative.

 

I noticed that you said there was DCIS in your superior margin.  Did they go back in and resect that?  That is what my surgeon is doing because I had DCIS 2mm from the medial and inferior margins.  DCIS is still cancer, just not invasive yet.  If they did not reexcise it, I would ask why and keep asking until I got an answer. 

 

Have you had radiation yet? I was not clear on the sequence of your events, but I want to encourage you not to stop with just surgery, especially if you had a lumpectomy rather than a mastectomy, and even more so since you say you had DCIS in your superior margin.

 

Maire

 

 

ScienceDaily (Dec. 17, 2004) — Researchers at The University of Texas M. D. Anderson Cancer Center have found a potential predictor of response to the chemotherapy drug Taxol, which is commonly used before or after surgery for stage I-III breast cancers, even though only a subset of women ultimately benefit from this treatment.

Patients whose breast cancer cells have lost their ability to express a protein called "tau" are twice as likely to have a good response to Taxol treatment, the researchers report at the annual San Antonio Breast Cancer Symposium meeting.

The finding makes sense because tau promotes the assembly of microtubules, which provide structure to the cell and help it divide. Taxol works by binding to microtubules to form an inappropriately stable structure which ultimately leads to cell death. "In the absence of tau, Taxol stabilizes microtubules more easily," says the study's lead researcher, Lajos Pusztai, M.D., Ph.D., an associate professor in the Department of Breast Medical Oncology.

If validated in larger studies, the finding suggests that tumor tissue could be screened to predict if it will respond to Taxol, says Pusztai. "If it doesn't, perhaps other chemotherapy regimens would work better."

The results also suggest a way to improve the use of Taxol, Pusztai says. "If you block the effect of tau with an agent, you could possibly increase the effectiveness of Taxol in more patients, making them super responders."

The researchers came up with their discovery after examining breast cancer biopsy samples taken from 82 patients, 21 of whom had a complete disappearance of their cancer after Taxol-containing treatment. They looked at the difference between these responders and non-responders in 22,000 genes, and found that tumors were highly sensitive to treatment that had low levels of tau messenger RNA (mRNA) expression in their cancer cells. This observation was confirmed by examining tau protein expression using a routine pathological assay, immunohistochemistry, in 122 additional patients. Then, research in breast cancer cell lines in the laboratory were undertaken to look at how low expression of tau leads to increased sensitivity to Taxol.

Pusztai says that about 25 percent of all patients show very high sensitivity to the Taxol-containing chemotherapy, and respond with complete disappearance of cancer after treatment.

"Assessment of tau expression at the time of diagnosis could identify a group of patients who are at least twice as likely to have high sensitivity to the treatment," he says. "The rest of the patients may not benefit much from the drug because none of the patients who had high levels of tau mRNA expression in their cancer experienced complete response to therapy.

Before routine use of such a test can be recommended, investigators say these findings will need to be examined in a larger, randomized study to accurately determine the clinical value of tau as a predictive marker.

Connie

 

 

TNBC is another animal when it comes to prognostic indicators. The smallest tumor can spread and have lymphovascular invasion, multiple lymph node involvement. If there are any rogue cancer cells remaining in your body - you definitely want them stopped in their tracks. 

 

Should you decide not to have chemotherapy or radiation, mastectomy is definitely something to consider strongly.

 

Please do not think the decisions were easy for any one of us - but when you arrive at the right choice that you can live with - a peace or calm will come over you.

 

To make an informed decision you need to have all the information. The women on this forum honestly share their experiences, provide the most up-to-date studies and research but the ultimate decision will be yours.

 

For me a life with side effects was always the more attractive option.  When I wanted radiation after my mastectomy - and the kind radiation oncologist told me all the potential problems I might have since it was on my left side (heart) later in life. I told him I welcome being a little old lady with heart disease! The operative word was "old".  When any of the doctors asked what I wanted...I told them "longevity" and their job was to show me the best way to attain that goal!

 

Connie

I'm TN and had about  2.4 cm tumor.  Prior to chemo, PET scan showed breast tumor with no lymph node invasion.  Did 2 cycles of AC.  Didn't appear the tumor was getting smaller in size so had an MRI and found that it had grown to almost 3 cm within the 4 weeks of the first two cycles.  So ended up with a mastectomy, sentinnal node was now infected.  Should I have done surgery first and possibly prevented the sentinnel from becoming cancerous?  Not sure, but in hindsight, I'm glad I didn't go through all 4 cycles of AC +T to find out it was all for naught and didn't gain any benefit.  After surgery, followed up with Gemzar + Cisplatin and 33 rads.

Best wishes to all.

Laurie

 

I just posted a great article on Neuropathy in the Resource section that you might like to read.

 

I too had taxotere and now have Neuropathy.

 

I have posted one or two studies in the Research section stating small tumors may be more dangerous than large ones.  They just don't seem to know so looking at every angle.

If you go thru the Resource section you may find some information you might enjoy reading.

 

So happy to see you online again dearest Pam! You are such a source of strength and inspiration (and information as well!).  Just had the major league of mastectomies 4/22 with a 12 inch incision and the downs and ups that come with this.  Oh if this were only IT!  But, to take a deep breath and say-here I go!  Speaking of tumors-I had 2 in the path report...primary was IDC/3.5cm and there was a second tumor beside it they found, same histology DCIS/1cm.  Unsettling but relief that I had the surgery first and know this now.  Unsettling because either they missed this on the MRI or the "little tumor" is new and developed quickly.  I am surprised by the seriousness of the actual recovery.  I loved all the tips and used most from having someone stay at the hospital with me to the woman cave!  But, the lack of restrictions except for a shower because of the drain fooled me into thinking-this would be easy/a breeze!  Nope.  I am down and have kept mobile, but not at all back to usual.  Wish I'd been better prepared for that.  And can I just say that have people SEE you like this!  It helped to have them understand that it was serious when I asked for help.  And let's not forget those pets-I should've made back up for the pups and again, thought this was not a big deal.  And can I also say having breasts removed is traumatic in of itself, let alone cancer.  And I just read about a vasectomy offered-no scalpel (we gals deserve that!).

So, I'll heal and deal while I set up for a pathology second opinion.  The first was pitifully lacking in scientific details we need to make chemo decisions.  I am not going in blind.  As Pam has let us realize, chemo is for good, but very serious!  Wishing each one of you healing today...hugs,

 

I know what you mean about size....TN tends to grow larger tumors (one of our characteristics), but alot of factors together say the "picture"...I have had a 3.5cm tumor removed and as TN and metaplastic, it does start adding to the picture and how to treat it per Dana Farber, Boston.  IDC also says something vs DCIS, stage/grade, BRCA-well, basically anything we can possibly find out pathologically is in our best interest to know-nice to meet cha!

 

If you are referring to the resource section here on the site, just click on the words...TNBC News, Resources & Tips Forum. Then look down the page under the words... Forum Topics, and there are now 42 pages. Browse through those articles, and I know that both Pam and I have posted articles on even tiny tumors being aggressive. If I have time I will search for you and get back to you later.

Hugs,

Nancy

 

http://well.blogs.nytimes.com/2007/12/17/small-breast-tumors-can-still-be-aggressive/?apage=2 - http://well.blogs.nytimes.com/2007/12/17/small-breast-tumors-can-still-be-aggressive/?apage=2

 

I cannot find the article I wanted to show you, it is in the Resource, News and Tips section of the forum so you can look there.

 

It is evidently a fact that smaller tumors can be worse than larger ones.

 

http://www.ajronline.org/cgi/content/full/187/1/29 - http://www.ajronline.org/cgi/content/full/187/1/29

 

 

Connie

  

I do not think you will find that article you are hoping to find.....because no one has found it. There are no iron-clad guarantees that by having no treatment we will be fine or by having the treatments we will be fine. 

 

We were diagnosed - we gather as much information as we require to make an informed decision and then we cross our fingers, pray, or whatever else we do to buy us a "life" insurance policy above and beyond science and medicine.

 

We suffer the indignities of being dismissed, misdiagnosed, misguided, mutilated, poisoned, radiated, and we bargain with side effects for quality of life with each treatment we undergo just because every day we open our eyes already makes it the start of a great day and puts it into the Plus Column.

 

I guess it is more an issue of how well you know yourself regarding what compromises you will accept regarding side effects from treatments. The answer to whether to have treatments or not or even what kind of treatments is something only you can decide for yourself.

 

I know myself well enough to know that I am not defined by body parts and feel just as happy even though one dart may not lie perfectly symmetrical. I can still live, love, laugh (maybe even better - because I do not sweat the small stuff anymore!). The essence of the person remains the same. The true spirit of the individual overcomes the physical limitations of neuropathy, or the cosmetic alterations of thinning hair, missing eye lashes, or reduced stamina. Maybe I am more forgiving of myself for being at less than my physical ideal....I just know to hear "Mom" called makes me know that I will do whatever possible to hear that word for as long as I am able.

 

 

Just my humble opinion.

 

Connie 

 

 

 

 

If you so choose to take chemo you can work with your options...turmeric is proven to be effective for colitis (research the archies to find the studies we have posted regarding the anti-inflammatory properties of Taxol - for rheumatoid arthritis and colitis, plus causes apoptosis in cancer cells - plus when taken with Taxol seems to prevent lung mets in mice).

 

Try a center that combined herbal/supplements/vitamins and traditional chemo and radiation regimens.

 

Many of the chemo premedications are a steroid of some form - It may be possible that you have used steroids with benefits at some time for flares of your inflammatory bowel disease.

 

Skin sparing bilateral mastectomies with implants are an option.

 

I hope you get to keep all that is important to you but hair grows back, they can reconstruct breasts, and try and prevent flare of your irritable bowel....

 

Connie

 

 

 

While I would encourage you to consider chemotherapy, I wanted to point out to you that radiation treatment will not cause you to lose your hair, and will decrease your chance of recurrence from 20-40% without radiation to 5-10% with radiation.  It should not affect your UC since it will be given just to the breasts.  I just don't want you to assume that the side effects from chemo and radiation are the same.  Your decision, of course, is your own.  Best of luck.

 

Maire

A newbie here (I have posted on the other forum).  I must say I can relate to the fear of loosing "parts of your body" (including hair).  But I see my girls every morning and the hug I get as they run our of school each afternoon makes me sure that what ever the treatments the onc suggests is due to research and experience.  We are all different - they cannot predict who will react to what.  They cant say for sur it will never come back.  They have givens (yes hair loss with chemo) but not everyone looses lashes and eyebrows or leg hair (now girls, that is the hair we would all love to loose hey  ;)

 

I am shattered at loosing my hair - it was part of "my" definition. It is shoulder length very light blonde.  It has bee my crowning glory for ever (I am 41 years old).  But you know - that is not all that defines ME.  Connie, I think you said it best with "your essence".  We all need to make the choices that will sit with us for life (and I intend that to be a long one).  MsBliss, you need to do what you feel is right.  And that may change over time - may I ask do you feel a connection with your onc?  I think mine new I was scared and worried - he tapped into my number sense and my girls (who were with me at the hosp).  He was also very factual and has me doing before and after tests to help me deal with the poss outcomes on the other sides.  OF course we hope for good results all round, but being young, he wants to measure bone density and heart, so that if there is any degeneration (sp?) that will be the next thing we work on.

 

My onc put it a great way.  We are all going to die - that is inevitable and we cant stop it.  This is not a prediction of death either - but how we can work together to try to eliminate the cancer and give me a "rest of my life".  Sure there is no guarantee.  There are no guarantees in life.  My cousin was taken from this life when I was 10 - she was only 8.  A drunk driver took her life - he got a few years in prison sure - but he has HIS life to finish.  So I am thanksful that I have made it this far - but want to go lots further.

 

I know that the chemo boosts me to 80% reduction of recurrence and rads addsa bout another 10% to that.  Well, I am a maths teacher, and I rather sit at 90% reduce risk than 50%.  I guess my children make me do the things I do.  I want to see them graduate, get married, travel and of course help with the grandkids. 

 

Good luck with yor decisions MsBliss, and I kjnow these ladies have given me some great advice so far (I have a few more questions that I'll post later).  They have a world of wisdom and experience - and some awesome research and results.  I am glad they are here driving our cause. 

 

I am heading off to a support group (a big step for me) - I am a bit more reserved and private, taking time to open up to people.  This has changed everything for me!!  I hope I cope OK - I still cry alot and have good/bad moments.  Maybe these ladies will help me - maybe not - but if I dont try I never know.

 

Wishing all a great day, fabulous week and an awesome NED year  :)

Debs

 

I have a spiculated mass in my path report...basically "tentacles" or branching out of the tumor.  It was one reason for me to choose a mastectomy over a neoadjuvant chemo option (shrinking wasn't a good reason w/spiculations) and a lumptectomy.  The post op path shows clear margins and no node involvment:=)  For me, this was my peaceful option!

 

One of our pathology consultants said sometimes spiculations are actually a has a better prognosis.  There are some good articles on this on reputable websites-best with this issue.

 

I started this thread and went for surgery first, do you recall?  I am 2 wks post op, doing well, first path report was better thane expected, so checking with a second opinion of the tissue-wish me luck!  hugs,

There are alot of side effects that could happen but that doesn't mean they will all happen to you.  Many women do quite well on chemo and rads.  If a woman does get say peripheral neuropathy it could go away in a month or two after treatments.
We all react differently.

But deciding not to do threatment is a personal choice.

Good luck to you.

 

I just came across your posting on rads...could you clarify?  I wondered what the % meant again?  So, would you take this and explain more to me?  I've had a mastectomy and am curious about rads with surgery as an effective (?) treatment option.  Thank you!

 

The 12-year follow-up to the NEJM study of the seminal study comparing mastectomy to lumpectomy with and without radiation found that the recurrence rate of lumpectomy alone compared with lumpectomy with radiation was 35% to 10% respectively in women who had positive lymph nodes and 32% to 12% respectively in women with negative lymph nodes.  Patients with positive nodes who had lumpectomy, chemotherapy, and radiation had a recurrence rate of 5% compared to a 41% rate of recurrence for lumpectomy alone.  The pdf summarizing this is at the following address:  http://www.rsny.org/200_PDFs/GSL-NSABP-EVALUATION-OF-WOMEN-COMPARING-MASTECTOMY-TO-LUMP.pdf - http://www.rsny.org/200_PDFs/GSL-NSABP-EVALUATION-OF-WOMEN-COMPARING-MASTECTOMY-TO-LUMP.pdf

 

Hope this is helpful.  Let me know if you need anything else.

 

Maire

 

Thank you for the article.  It was very informative.  However, is there any inclusion of TNBC?  Generally, I read this type of treatment options (particularly a lumpectomy w/rads being a viable successful treatment option vs a mastectomy) are overall true for women w/BC..but what about us TNrs, do you know?  Take Care,

I wonder what article you are referring to?  I would love to read it and about your onc being part of it from Anderson...mine is the east coast Dana Farber and they all share and my onc just came back recently from Anderson for a conference there she was thrilled about! 

 

I am so glad this thread is generating such discussion on neoadjuvant vs adjuvant chemo!  It makes this personal decision an informed one that we can support each other no matter which we choose-thank you for sharing!

 

Yes, I too am finding some of the research is not applicable to us as adjuvant chemo patients.  I am still researching and have read many articles you led me too.  My onc visit is tomorrow and I am so nervous that we'll be talking general IDC protocol rather than specific chemo options for both my TN and being Metaplastic.  They may even say chemo is optional, given the better path report (if they ignored the categories I'm in, as they seem to).  I do not accept "kitchen sink" options when there are good rationales for specific regiments and protocols.  Ooo am I rattled today.

 

I hope you are continuing to be stronger?  Am I recalling that the chemo issue is what is effecting your health, if you don't mind my asking?  Hugs and healing to you!

Maire,

Oh so sorry and thank you for both telling me about the PM box and your answer. 

 

 Would you be willing to give more details from you and your onc's decision given you have TN and are Metaplastic? DF is less interested in that and still sticks with I have "IDC" and treat it as such.  Some of the trials or "off trial" options for the Stage IV chemos they might consider.  I may be iffy on "A" for heart questions.

 

Any info you can lead me to would be SO appreciated...we are "rare" having this subset (in the thousands world wide)  Take Care,

 

I am afraid that although I have triple negative breast cancer, it is not metaplastic, it is just basal.  I was lucky to have a friend who is an oncology fellow who encouraged me to go to KU medical center for treatment, since where I live, they are still not doing neoadjuvant chemo for triple negative.  I had taxotere and carboplatin every six weeks x 6 treatments.  The decision was made to reserve adriamycin for adjuvant chemotherapy if there was any residual cancer after the neoadjuvant chemo because I had an EF of 55%, and they hoped they could avoid any cardiotoxicity.  I was lucky because there was no invasive cancer left on pathology, which gives me a pathological complete response, and a markedly improved 5-year survival based on that MD Anderson study.  I have looked up some data on medullary breast cancer, and there is not as much information as I hoped to find. 

 

I did find some studies on breast-conserving therapy (lumpectomy) and radiation compared with mastectomy for triple negative breast cancer, and the conclusion was that there was no significant increase in local recurrence with lumpectomy and radiation (which is the risk of lumpectomy, increased local recurrence) and that it was therefore safe to do lumpectomies in women with triple negative breast cancer.  I can get the citations for you if you want.  Hope this is helpful.  I can look on some professional sites for more information if you would like. 

 

Maire

 

I am sorry, I thought you were dx metaplastic.  I am pleased for you that your neoadjuvant C/T was successful.  I decided on surgery first after researching and my tumor size was large, with no guarantee it would shrink.  The decision was right for me and the path better than expected.

 

If only there was a chemo regime for TN that included my cellular makeup with chondroid, mucoid and epithileal mixed cells.  I see the onc tomorrow to discuss the path and see how well I've healed. I was going to research chemo for other cancers with these cellular makeup, like colon cancer.

 

I am, like you, beginning my dream this Fall in nursing...I don't have time for drawn out, possibly sick down time after end of July.  They get short and quick if chemo is recommended.  I have not read about T/C used together, if you have any professional articles of that.  How did you fare doing school and chemo at the same time?

 

I am very happy for you.  I know you are already a better doctor for this experience.  I feel absolutely that way becoming a nurse after an allied clinician for 30 plus years.

 

Bring it on!  Hugs and healing to you,

 

Taxotere and carboplatin have been found to be effective in triple negative breast cancer, and the combination is considered to be first-tier, although adriamycin is still considered to be the gold standard.  I was able to continue working most of the time.  There was an episode of dehydration that hung me up and another of hypercalcemia combined with pulmonary emboli that ended in me being hospitalized and missing three days of work.  I also took off a week after my surgery.  I won't be taking off any time after my surgery tomorrow because I have postponed too many patients' appointments after my surgery.  You will probably be fine.  I found that compared to real life, school was easy (you just don't appreciate that at 20!).  I did much better in med school than as an undergrad.  You will do great.

 

Good luck tomorrow!

 

Maire

I'll be fine it is just cuts back on my independence,

 

 

Talk with you tomorrow,

Ooh, sorry didn't know today was the big day!  You were very kind to give me feedback as you packed for today!  You're amazing!! And very helpful!

 

If this gets to you in time, I am sending the best we have within us as you go through your surgery..we will be here after you get out of recovery!  I think your support and strength is amazing.

 

We are here for you and let us know how you are!

 

Hugs and healing to you today....definitely!

 

Thank you for you loving and kind reassurances.  You have such a way that blends wisdom and love-amazing woman that you are.  I too hope that being mobility challenged is IT for you!  You are so on top of things, I have every confidence that you will make sure the docs take the BEST care of your needs.

 

I do have panicky feelings that the onc will try to put me into a corner...hey, the onc could also just say this is IDC and I'm okay like this tx wise (I know, I'm a smart alec!)  But, I am leery of having heart and bad IBS already that they just say "it's fine"...I have an advocate heart of steel that has an answer to THAT!  So, I am gathering information today and will NOT make any decisions today.  I may try to record this session to get it all-at least a note taker.  I will likely need a mediport as my veins are on my right arm/hand which is my writing/doing side.

 

If you read this thread, I have been accepted into full time nursing school and I have to think of my life goals rather than just being cancer.  My tx time is limited so I am well enough since this is a rigorous program. 

 

Sorry for the long entry.  I am scared about this next step.  Something in my soul's intuition says be cautious.  I did that with my surgery and the decision and it went beautifully.  My experience was incredibly positive for such a horrifying thing (one long 12 inch scar under my arm to mid chest and my larger sized right breast to watch).

 

I am strong and you all help me remember who I am.  Thank you and I hope the onc has plenty of research for me-maybe even a good trial!

 

The best of hugs and healing to you dear Pam!

Suzie,

 

It sounds like you have things pretty well under control and we all know that is so hard to do in a stressy situation like you are in right now.

 

You are right, never commit to anything that makes you uncomfortable.

Also there is always the choice of a second opinion isn't there?

 

I know you are scared, we all are so we understand and right now you are faced with some tough decesions.  Try to take a deep breath, many of them possibly today and look at what they say then do your research.

 

I highly recommend getting a port, minor deal and the least of your worries right now.

 

Please let us know how your day goes

 

I did not remember about your going to nursing school, that is wonderful and yes a great goal and dream waiting for you to get well.

 

Suzie don't worry about the length of your post.   I've done some doozies.

 

Will be with ya in my heart.

.

Just a thought but they could use something else besides Adriamycin.

I've noticed a few posts in here mentioning that.

 

After a serious onc visit, I am just heartbroken.  I must face the mortality issue of the decisions I make over chemo.  Metaplastic gives me a 40% reoccurance if I choose the third generation regime.  She supports school, but I will be 3/4 through.  She is asking for the echo redone for up to date info on Adriaymicin safety.  She seriously stated that anything less would make reoccurance certain.  I have lost my breast to end this madness and yet it goes on.  Now I must put poison in my body and while she is willing to watch me carefully, adjust doses, schedule and treat any side effects-I must move forward with the strongest of chemo regimes that research has shown effective or else face certain reoccurance.  I have to get both a mediport and echo while figuring out how to get innoculations/TB/HepB tests for school before chemo.  Today I feel like giving up.  Today is almost  5 months since finding the lump at Christmas and my family also needs me.  My daughter must attend her grandmother's memorial service from my first marriage.  Her fiance's grandfather suddenly passed 2 days ago in his sleep.  She is beside herself and needs "Mom".  I want to be the person who would go the Inn tonight with her and her older cousins.  But cancer isn't invited and I can't shake it today.  I HATE it's face today!!

I hope to share this (not pity) will put me back in balance...

 

Your doc sounds like she will be more than willing to step in to help you, make adjustments, whatever you need.  That is a pretty good deal.

There is always the second opinion too.

 

We women get this monster usually at the worst time.  Some have weddings planned, trips, it's crappy, there is never a good time whatever your life is like.

 

So what you are going to have to do is start your researching on the meds.  What kind of chemo is she talking about?  How many treatments?

 

Most of us have families who rely on us to get things done.  We are multitaskers, it is our nature to fix everyone's problem and probably shove your needs aside.

This will be different.  While you are going thru treatment it is all about you!  Everyone that has been leaning on you will have to step up to the plate and help you.

 

There are lots of tips and ideas we can pass along if you decide to do this.

Your treatment will last a few months and then you will begin to heal.

 

It is more important to make sure you are alive honey. 

 

I know you don't see this now but believe me, it will all work out and you'll get what you need done.

 

Dry those tears, inhale, take a deep breath, get ahold of something like xanax to help with the anxiety and maybe something to help you sleep.

 

I'm so sorry to hear about your daughters situation.  But please don't feel guilty it is not your fault and your family will understand when the routine begins that mom is going to have good days and bad days, period!

 

We all respond so differently and you will be in my prayers that this ride is as smooth as possible.

 

Write here and vent, cry, ask questions, we will help you.

The echo is no biggie nor is getting the mediport other than a little tenderness for a couple of days, both quick procedures.

 

You are just going to have to explain that mom is probably out of commission for awhile and hopefully they will understand and none of this is your fault.

 

Emotions are a big factor in being diagnosed.  You are gonna cry, get angry, hide under the covers, all kinds of things.  Then when things get going you will fall into your routine and the stress lightens up.

 

One more thing.  If you have to go hour by hour or day by day.  Looking

ahead will just provide stress you don't need.  None of us know what is down the road for any of us.  But of course we worry.  Try to stay within today and deal with it piece by piece.

 

Big hug.

 

I am so sorry about your news.  Just to encourage you, I read several studies that said that despite the aggressiveness of metaplastic breast cancer pathologically, survival was actually better than it was in regular IDC.  Would you like me to send you those citations?  They were from UptoDate, which is a website I subscribe to and which is updated regularly.  I know that the news was hard, and if you are not comfortable with the recommendations, i encourage you to get a second opinion.  It doesn't matter how great the reputation is if you don't feel comfortable with their recommendations and you don't feel like they listen to you.  Have you had a MUGA scan?  They are often used instead of an echo to evaluate ejection fraction, and I believe they are often considered more accurate and less operator-dependent.  That might help you make your decision.  My surgery went fine except that no one told my husband when i got out of surgery and he spent two hours worrying that something had gone wrong and that I was not okay or required additional surgery.  He was majorly pissed, but of course I felt like he was yelling at me.  I did see some of my friends from residency who are now attendings at KU.  That was fun. 

 

Anyway, remember that you are a partner in this, and that your ideas and perceptions are important too.  Just don't let the research paralyze you.  And see if there are any studies for metaplastic cancer available.

 

Maire

 

Your link made hot.

Hugs,

Nancy

 

 

http://www.breastcancer.org/treatment/chemotherapy/new_research/20090429b.jsp - http://www.breastcancer.org/treatment/chemotherapy/new_research/20090429b.jsp

 

About a year or so there was a report that came out saying probably only 8% of cancer had any benefit.  This study backs that up.

 

For the life of me I do not understand why there so many Oncs sticking with Adriamycin.  Even in this report since testing isn't commonly done just kmowing the her2 would be sufficient.

 

I think those of you getting ready for treatment and know you are getting A or find out that they are suggesting A should make copies of this article and the other one should be in the Rescource/tips section.

 

You got my broken spirit through last night with breathing, and resting and knowing I had options.  I cried inside so much last night.  The stats were overwhelming.  I was prepared for a good visit, since my path report was much better than expected (no nodes and not 7cm, but 4.5cm).  But, if you read my thread, I am "show me the research" now!  I'm back.  Don't dare just make statements and not back it up.  My daughter was great and stronger from our going through this.  She said that despite everything, she's really ok.  Several good souls called last night who truly care.  And although I am not ready yet for what lies ahead, I stepped out of last night-it worked and I thank you and others here for the safe place to be honest about our illness and ups and downs.  Thank you with hugs,

I have read that the big A does and does not help TNBC.  Someone needs to clear up the confusion for us!

 

You are a strong woman!  Keep it up.