Need urgent advice

kpblog

I was shocked to hear that I got breast cancer. Being vegetarian whole my life, no smoking, drinking even soft drinks or coffee and practicing very natural lifestyle, never thought i would ever get cancer.

I am 54 years old, still going through pre-manopause. Recently, I had lumpectomy. The tumor size was 1.2 cm. in mamo but tumor was not found in lumpectomy and the tumor size was not determined during biopsy because the tumor may have been cut into pieces with the largest piece was 5 mm and all cancerous tissues were removed during the biopsy. Other results are: Estro/progesterone:  +ve, HER2 +3. Lymphnodes -ve. IDC: grade 2, DCIS.

My dilemma is, I consulted three Oncologists.No one told me the specific treatments I need.  There are no data and noone could determine whether  I need chemo + Radiation +Herceptin or only radiation +Herceptin.

Can anyone tell me, based on my history and diagnosis, which treatment plan is appropriate? Should I go for the aggressive chemo+radiation + Herceptin or less aggressive radiation+Herceptin? Can any one with the similar history share their experience? 

I have to make decision in two days. I will really appreciate your reply. 

KP

sheila888

HI KP.....I was the same age and 8 months post menopausal when I was DX. My tumor was also 1.2cm with no node involvements and Triple positive.

I had a lumpectomy and re-excision.

My treatment was consisted of;

4X Dense dose AC

4X dose dense Taxol with Herceptin for 1 year. Also had radiation and took Femara for 5 years.

We are all different and might receive different chemo regiments.

Good Luck to you. If any questions I'm here.

Sheila

CoolBreeze

If you are HER2+, and truly had a 1.2 cm invasive tumor, than the recommendation for you would be to do chemo and a year of herceptin.  I did TCH, although my tumor was much larger. I had a mastectomy too, and I thought everybody who had a lumpectomy did radiation.

Mammograms are not good at judging sizes of things.  It's possible you never had a 1.2 cm anything, and maybe you only had a small mm area of invasive cancer.  In that case, chemo might not be recommended.

What I would do is contact your surgeon and ask for all reports if you don't have them.  You want your biopsy pathology report, your lumpectomy path report. Did your doctors give them to you?  Something sounds odd.   Did you have DCIS only?  

It's kind of a strange case and it's weird you aren't getting real answers.  Somebody should have some recommendation for you.

By the way, I was pretty shocked I got cancer too, having lead a healthy lifestyle.   I've come to learn there is no rhyme or reason to this disease. You can do everything right and get it and do everything wrong and live to a ripe old age. 

coonie

My treatment was exactly like Sheila's except I didn't have radiation. I chose bilat mast instead. And I'm taking Arimidex.

Good luck!!

kpblog

Thank you Sheila, Coolbreeze and Connie. I am afraid of the Chemo and all side effects and so, trying to avoid it. Doctors are telling me that I don't need chemo due to the small size of the tumor and clear margins and results of lumpectomy and negative lymphnodes. However, due to the HER2 +VE, conservative and aggressive approach of chemo is recommended. Therefore, I am confused whether for "may be future reccurence" of 3-5% possibility of getting cancer, is it worth to go through Chemo and suffer with weakening of heart, immune system and bring other diseases?

voraciousreader

Sorry to hear about your diagnosis.  Google search the NCCN 2011 breast cancer treatment guidelines and see what they say.  To log in, you have to regisiter.  It's easy.  There is a wealth of information.  Furthermore, if none of the doctors are in full agreement, then request that your case be brought before a tumor board. 

BTW...there are numerous chemo threads here at breastcancer.org.  I think being afraid and also your concern about future side effects is valid.  However, many of the women who have had chemo find it doable AND I think doctors nowadays are cognizant of the future side effects and take precautions whenever possible.

Good luck.  One last thought...breast cancer is really funny, isn't it?  I  led what I thought was a healthy lifestyle and voila, here I am too!

voraciousreader

Just looked at the NCCN guidelines....page 15 of the professionals guide....Chemo and herceptin are considered for tumors that are triple positive that measure over 5 mm (between 6 mm and 1 cm). Chemo and Herceptin are recommended for tumors over 1 cm. Ovarian Ablation is also discussed for premenopausal women....Make sure you read all of the footnotes.

ma111

kpblog

Because you have led a healthy life style it is not likely that you will have lasting heart, immune or lung effects from chemo. Pat yourself on the back for taking care of yourself and being healthy enough for treatment. This also means that your body will recover faster with your good lifestyle. I have a sister that is not healthy enough for chemo. http://www.guideline.gov/browse/by-topic.aspx, this site might help answer your questions.

Being pre menopausal might indicate a more aggressive cancer, but having negative margins and nodes is a good thing. If they only got the tumor from Bx it is hard to say the size. Glad you are ER+, that is less aggressive even though being pre menopausal is more aggressive. I would go with what 2 out of 3 recommend for treatment and definitely go with radiation.

I was so scared to start chemo I was visibly shaking. My family doctor called in some Ativan and it helped a lot. It also helped me to think more clearly.

Mouse6

Hi kp blog...

Based on the info you've provided, I think lumpectomy with clear margins, radiation to the local area, perception and tamoxifen (or other estrogen blocker) would be the appropriate treatment. I think chemo is unnecessary in your case. I think the collateral damage would far outweigh any benefit.

I am not a doctor though, and I feel like you should be receiving more guidance from your doctor. Have you considered getting a second opinion? Don't let them make you feel like you have to make this decision so quickly. That's not fair. You certainly have time for a second opinion...a week or two will not affect your prognosis!

Mouse6

Sorry for the typo "perception"

mmm5

Mouse

actually the recommendation for this type of tumor IS chemo plus Herceptin. MD Anderson did a retrospective study for tumors Her2 positive smaller than 1cm and they are now recommending chi for those as well.  KPBLOG I would not mess around with Her2, the actual incidence of recurrence from the MD Anderson Study for Her2 tumors under 1cm was greater than 20 percent. (these were also node negative)

I had virtually the same stats as you, and all three TOP Oncologists I sought out recommend the chemo plus Herceptin that Seyla, Coolbreeze,and Coonie had.

If you have not gone to a top breast center yet try to at least have a phone consultation.

Good Luck 

voraciousreader

Even Small HER2-positive Breast Cancers Have Elevated Risk of Recurrence By CancerConsultants.com
Without HER2-targeted therapy, HER2-positive breast cancer has a higher risk of recurrence than HER2-negative breast cancer, even when the breast cancer is small (1 cm or less); this raises the possibility that even women with very small HER2-positive breast cancers may benefit from a HER2-targeted therapy such as Herceptin® (trastuzumab). These results were presented at the 2008 San Antonio Breast Cancer Symposium.The human epidermal growth factor receptor 2 (HER2) is part of a biological pathway involved in growth and spread of cancer cells. Several types of cancers overexpress HER2, including approximately 15-20% of breast cancers.  These cancers are referred to as HER2-positive.Herceptin is a drug that targets HER2 and helps to slow or stop the spread of cancer cells that overexpress HER2. Herceptin has been shown to improve treatment outcomes among women with both early-stage and advanced HER2-positive breast cancer.A question that has remained uncertain is the need for HER2-targeted therapy among women with small breast cancers (less than 1 cm). To explore the behavior of small breast cancers in the absence of Herceptin, researchers at the M. D. Anderson Cancer Center evaluated the records of 965 breast cancer patients who were treated between 1990 and 2002. All of the patients had tumors that measured 1 cm or less, and none had received adjuvant chemotherapy or Herceptin.By the end of five years, 6% of women with HER2-negative breast cancer had developed a recurrence compared with 23% of women with HER2-positive breast cancer.The results of this study suggest that even small HER2-positive breast cancers have an increased risk of recurrence. Consideration of adjuvant treatment with a HER2-targeted therapy such as Herceptin may be important for all women with HER2-positive breast cancer, regardless of the size of the cancer. It should be noted, however, that the current study did not assess the effectiveness of HER2-targeted therapy in women with small, HER2-positive breast cancer.Reference: M. D. Anderson Cancer Center news release. Early stage, HER2 positive breast cancer patients at increased risk of recurrence. Largest study of its kind finds subset of women that may need additional therapy. Available at: http://www.mdanderson.org/departments/newsroom/display.cfm?id=BD7AE450-A5C9-4C64-BD4666C8CA98CE4F&method=displayFull&pn=00c8a30f-c468-11d4-80fb00508b603a14 Accessed December 12, 2008.

dragonfly1

Kpblog Add me to the list of health-conscious women who find themselves diagnosed with Triple Positive BC-go figure. And since you are asking our advice, I'll weigh in and say that the recommendation has moved toward chemo+Herceptin even for small Her2+ tumors. My tumor was 1.2 cm with negative nodes and I remember looking at the MO and saying "why do I need chemo if it's not in my lymph nodes-how could it spread?" She told me that quite honestly they don't know but their best guess is that cells may break away from the tumor and spread through the bloodstream which is the reason chemo is recommended in Her2+ cases. That was enough for me. I wanted to know that I had done everything possible to improve my chances. I wasn't thrilled about the prospect of chemo and I had plenty of SEs but in retrospect it was manageable and I was able to work full-time. You have to do what is right for you and don't feel pressured into making the decision too quickly...

CoolBreeze

Chemo can be very doable.  I worked during TCH, and now am working through Navelbine, Herceptin and Zometa.  I don't have any heart problems, or whatever else you said.  Except for cancer, I am perfectly healthy and feel fine.  In fact, I think health-conscious women have an easier time during chemo because we are used to eating properly and taking care of ourselves.  A lot of chemo SEs can be minimized just by drinking enough water and eating high fiber.  You will have lowered blood counts and you will get tired but those things can be managed for most people.

Don't listen to medical advice given to you on this or any other board - by me or anybody else.  Every cancer is unique and every person is unique.  Also, please don't make decisions based on fear, or perceptions you might have of what things are like.  Make decisions with your doctor that are medically best for you.  There is so much misinformation on the Internet that you really should rely on your doctor's advice, so find one you trust and get a second or third opinion if necessary. 

This forum is FABULOUS for finding out people's personal stories and tips for dealing with cancer but it is no substitute for medical advice and none of us can know the details of your case. 

HER2 positive is nothing to mess around with.  I did everything right, pre-cancer and post-cancer and now I'm stage IV.  Cancer came back in the liver only five months after finishing herceptin.  HER2 cancer can be very, very aggressive.  I'd probably not be here now if I'd skipped it.  I was only 51 at dx.

Please find a doctor you can trust and ask him all your questions.   

Mouse6

kp...I stand corrected by the other ladies. I knew Herceptin is necessary, but didn't realize that they are now recommending chemo for small her2+tumours with no nodes. I would like to reiterate my other point which is to take time to get another opinion. And I think coolbreeze makes a very good point. I will definitely be checking my medical opinions at the door.

Rubyluby

kp, it used to be assumed that all small breast tumors carried a favourable prognosis. Several studies have now shown that this isnt true. Even really small HER2 positive tumors carry a significant risk of recurrence, as high as 23%! And, while I dont want to scare you, when HER2 tumors do recur they can very often recur in distant organs.

Look at this study here:

http://jco.ascopubs.org/content/28/28/e541 

The very good news, as shown in the above study, is that if you have a small node neg tumor and you have chemo and a year of Herceptin, your chances of recurrence drop dramatically to close to zero!

I really think its worth going the whole treatment hog with any size Her2 tumor. Mine was only 1 cm big and I did six rounds of FEC and a year of Herceptin and I am so glad I did.  

 Best of luck with your decisions,

Lucy 

Sassa

I was told that after my mx, my risk of recurrence without any other treatment was 60%.

 As far as herceptin without any chemo goes, if you are in the United States, herceptin is only approved for use after chemotherapy.  No chemo, no herceptin.

weety

Yep, I'm another who agrees that chemo & herceptin should be given--my tumor was only 7mm and I went through the whole shabam--chemo & herceptin & radiation & ooph/hyster & currently on femara.  My onc said "there are no nice HER2+ tumors!"

Jaimieh

There is an ongoing study that is giving Herceptin and Taxol (or taxotere, I can't remember exactly) for 12 weeks and herceptin for the year. 

kathleen1966

Interesting results of new study here:

http://www.sciencedaily.com/releases/2009/12/091212141414.htm

Well actually a year ago study...but this is new in the world of Her2+

SAOIsenberg

kpblog, what did you decide? I was dx'd in '01, when Herceptin was in clinical trials. I had too small a tumor to qualify for the trials, so I had 4 cycles of A/C (not dose-dense, that's new too)., radiation and took Tamoxifen for 5 years. My tumor was triple +, grade 3, nodes were neg. I was 32, and super healthy. REALLY amped up the healthiness afterwards and for 9.5 years, NED. Even after being the poster-child for lifestyle, I just had a new BC dx'd in the other breast in June. Completely different profile. DCIS, grade 1, small - my surgeon said "10 years ago we were really worried about you, now, this is a nuisance and will require more surgery, but just goes to show, even when "experts" are worried, it doesn't mean bad things will happen."

I was terrified of chemo - I often don't take Tylenol/OTC drugs b/c I just don't feel like I need them. The benes of chemo for me were great, though, and I have to say it wasn't nearly as awful as I'd anticipated.  Being healthy will help you get thru treatment much more easily, and bounce back more quickly.

As for healthy lifestyle, it's not a bullet-proof shield, but more than one doc has guessed that it might've been a shorter time 'til my second cancer if I hadn't made my body such an inhospitable place for cancer.  We'll never know, but I know that I feel great, look great, and am optimizing my chances for fighting off all sorts of bad health-effects by eating very well, exercising daily, not drinking, etc. etc. etc.

Let us know how it's going! 

ma111

I live in the United States and received Herceptin at the same time as chemo. After I progressed and was waiting for the paper works and testing to go through for a vaccine trail I had Herceptin by itself for 1 month before I started the trail.

kpblog

Thank you to all. I got excellent advise and support from all of you. I greatly appreciate it from the bottom of my heart. I researched and learnt from the NCIS guideline and also from the other text books. I had tumor board review of my case and the decision is that I need to have aggressive chemo for a year, TCH plus Herceptin (18 cycles) even though I had clear margins, negative lymphnodes and no tumor during the surgery. Is it possible to have a biopsy sample mix up? What if false negative? After 1 year of chemo, I have to be on meds for 5 years for HER2. I will also have radiation for six weeks. Is this agressive and neccessary treatment plan? Noone knows and I consulted four Oncologists. All told me that no one knows what can happen in the future and so it is better to have all treatments done.

I have to still reasearch on the long term side effects of chemo. What if I have 5% chances of recurrence without chemo but have bad quality life of heart, bone, hearing  problems for rest of my life? I am very active and do not want other physical conditions. Any one can tell me from the real experience about the long term side effects?   

My chemo will start next week.

Thanks again to all for helping me out.

KP 

kpblog

Hello All, '

Thanks. As I read all of yours reply, I am convinced that I must go for the full rounf of Chemo+Herceptin + Radiation and five years of meds. It is not what I am looking forward to but I must make myself strong and go for it.

I will share my experience of the treatments with others. Too bad, there is no study data on at what rate tumor grows or cancer comes back in HER2 patients. I don't know if it took 5 years to grow a 1 c.m. tumor or 1 year. If someone does this study, it will tremendously help people to decide whether to go through harsh treatment or not, especially it will help the older patient. I know some one, who had lumpectomy at age 25 and now at age 70, needed mastectomy. Three of my colleagues since last year found to have breast cancer and all are under treatment.

Two people I know, one had lumpectomy and radiation only and her cancer came back after 5 years and now had mastectomy and full treatment. Another had lumpectomy and was in the middle of chemo (four months) and her cancer came back and had mastectomy in the middle of her treatment. Another colleague finished her one year of treatment after mastectomy (was not able to work for whole year and had worst chemo side effects). She looks great and is now fully active.

It is so strange, how this happens and we, females have to go through all these. This experience hopefully will change my outlook and perspective towrds life and now, I value it very much.

Love to all.  

KP

kpblog

Thanks. At least I found you having the similar case. So far, No one had told me that they had smaller tumor with HER2+.

You are strong woman and I am glad to hear that you are working and went through it successfully. This is very encouraging for me.  

kpblog

Thanks RubyLuby. I think it is a good advice. I will follow that.

tennisgirl

kpblog - My tumor was between 2 and 3 cm, and I was stage 2, grade 3.  My treatment was the same as has been recommended for you. I had the lumpectomy, then chemo (TCH), then radiation, and then more herceptin.  I am now using Aromosin for 5 years.  (Tried tamoxipen and femora, but I had problems with them.) I wasn't as healthy as you as far as diet, but I've always been very active in sports.  Everyone is different, but if it makes you feel any better, I continued to play tennis during my chemo and radiation therapy, although not as well or as often as I did before and do now. I am almost 3 years post surgery.  I'm schedule to receive a hysterectomy in a few weeks, which I have questions about, but other than that I have to say that I feel great!  It was all scary going into it, but each step was easier than I had prepared myself for.  Stay strong and stay positive.  It makes a big difference!!

kpblog

Hi Tennisgirl,

Good luck for the hysterectomy. I heard that Taxol or Tamoxiphen causes uterus cancer and so my colleague told me to ask my doctor to give differnt med  like a Remedix. I don't know if anyone else had uterus cancer as a reult of Taxol tx.

kpblog

Hi Witty,

When did you have Hysterectomy after BC and chemo with Tax? I have heard that a person who had Taxol tx gets uterus cancer and needs hysterectomy. Is this true? 

wilsondd

Have you heard of the clinical study for the new Herceptin?  It is called the TDM-1 study.  Ask your doctor.  There has been some great success with minimal side effects.  Good luck and prayers are going up for you.

kpblog

Hi Dragonfly1,

Thanks. Your case seems to be exactly like mine. So, I am happy to find similar case. Just wondering, how long you had to get the tx? I was told to have 18 cycles of chemo (TCH plus Herceptin followed by 6 weeks of radiation, followed by meds for five years. All for exactly your case. Isn't this too aggressive? 

Thanks.

KP