Bad news now maybe?

KC71579 · March 2010

Hi Ladies

I have a question for you. My surgeon called me Friday night and told me that my lumpectomy on 2/24/10 confirmed that I will need radiation therapy and that chemotherapy is NOT needed. So, I just went to meet the radiation oncologist. He got a copy of a report dated 2/22/10 which was the update from my original breast duct excision/density excision on 2/9/10 where they originally found my cancer. This addendum to the report states I am ER+, PR+, and HER2+. My radiation oncologist freaked about the HER2+, and mentioned now chemo, so it made me and my mother cry. He tried to call my surgeon, who is currently in surgery. Now I'm really scared about how this changes my treatment, if at all. He handed me a paper "Practice Guidelines in Oncology," which still says that no adjuvant therapy is necessary given all other characteristics of my tumor and said that I *might* not need anything else, but that he was going to talk with my surgeon and call me later. Any insight you can give me would be greatly appreciated. I'm freak out again I am waiting for someone to call and talk to me. I'm only 30 years old and getting married in a few months. HELP ME! Krissy

sheila888 · March 2010

Hi Krissy....Im also a triple positive and much older than you are.

Im only writing my own experience.

HER2+ is not something you should be freaking out.

I got chemo and Herceptin which is the standart treatment for HER2+ cancers.

Its been 5 years and I'm doing fine.

Hugs to you.

Sheila

charleneg · March 2010

Hi Krissy,

There is so much help for HER+ now with Herceptin. I had chemo and it truly was not that bad for me, metal mouth, 2x threw up but mostly tired, sleeping 12 hours a day at times. If you have to do it , you will get through it I promise. I am now on Herceptin until mid-April and that has pretty much no real side effects.

It's always harder in the beginning.

Take care.

Love,

Char

ananda8 · March 2010

Brick,

I am ER+PR+ and Her2 borderline. This is pretty unusual and my onc called the lab to check. After talking to my onc I decide that the advantages of chemo were out weighed by the chance of side effects so I turned down chemo. I am watched very closely and have had two biopsies since my initial surgery. Both biopsies were negative.

You need to talk to your oncologist and find out what is going on. The radiologist will have an opinion and the surgeon will have an opinion, but your oncologist has the expertise.

Good luck and best wishes.

Anonymous · March 2010

Hello Krissy, I am HER-, but because of some other issues, chemo was offered to me as "adjunctive therapy." I did the first chemo and found out I had a delayed allergic reaction to the Taxotere (gold standard for chemo-tax plus cytox). I am supposed to have three more rounds of chemo with a different drug, but honeslty given the fact that i nearly died from the first chemo, I am not inclined to do it again (even with different drugs). Chemo is a serious thing but in the end, you have to do everything you can to save your life. I know you are scared but it sounds like you so not have enough info to really make a decision. The thing I regret most is that I did not get a second and third opinion to REALLY understand what was up and what my options are. The most irritating thing for me is that all of the DOCS are not SPECIALISTS and they do not treat the whole body-only their part of it. Getting a hold of a surgeon after he had done my surgery is nearly impossible. In most of them are working a conveyor belt of surgeries. NOW WHAT I FOUND OUT IN MY CASE IS THAT MY RADIATION ONC IS NOT AN ONC IN THE CLINICAL SENSE OF THE WORD. MY RADIATION ONC FREAKED OUT TOO OVER MY CASE AND SCARED THE CRAP OUT OF ME. I HAD TO GO TO A REGULAR ONC TO GET A FULL IDEA OF WHAT I WAS LOOKING AT AND TO OFFER ME CHOICES.our radiation onc here on the Outer Banks (weonly have one) is only experienced in Rads!! Yours might be different. Just a thought. (((BIG HUGS))) SV

noellech · March 2010

Make sure you have a long - long discussion about fertility. Most people your age find that their fertility returns after chemo, but not all. I did chemo for a 5 mm tumor grade 1 triple positive but only because I have three small children and I was done having kids. At 40 my periods have not returned which is okay by me but not great for my health. If you decide to do chemo, maybe you should pursue some kind of "chemo light" with the herceptin. There is a woman on the boards that took this route with a small Her2+ tumor. You can find her on the "Her2+" board. I think it is Alaska angel. Good luck with your decision.

Noelle

Ezscriiibe · March 2010

I'm very surprised your surgeon even weighed in on the chemo issue at all.

Is your surgeon an oncologist? Is there a tool that the surgeon uses to recommend chemo?

txstardust · March 2010

I want to echo what some of the others here have said - definitely consult a medical oncologist. S/he will be the expert in helping you make decisions re: chemo. Surgeons and radiologists do NOT have all of the knowledge that is necessary to direct your long-term care. Have they talked to you about taking a hormone blocker?

All that being said, if it does turn out that you need chemo, just know that while it is no walk in the park, it is doable. I had a couple of visits to the hospital due to neutropenia, but I'm still here and finished with chemo. Good luck in the time to come!

Peace,

Shelby

KC71579 · March 2010

Hi all

I have an appointment with a medical oncologist next Thursday, and am awaiting a call from the Cancer Institute of New Jersey for my second opinion. The NCCN guideline for my case says "No Adjuvant Therapy" needed. So, I will see what the medical oncologist says. I will not allow them to do any chemo unless they prove to me the benefit with factual information, and show me how the benefit would outweigh the risk in my particular case. It was mentioned that hormonal therapy is likely an option because my tumor was very highly receptive, ER 98% PR 90%. Again, I will try to stay calm and see the medical oncologists.

As for my surgeon, he's a breast surgeon oncologist. Obviously, that means he focuses on the surgery part. He probably weighed having seen it before, I don't know for sure. I'm not looking to crucify him though. He's been very good to me so far, even called me from vacation and nightly thereafter to see how I was doing after he gave me the diagnosis, and he's the best in his field in my area. It doesn't make him right or wrong in whether or not I need chemo. That will remain to be seen.

The waiting sucks! That alone might kill me...not the stupid cancer.

KC71579 · March 2010

Oh and my tumor is <5mm or 0.5cm.

LINDAGARSIDE · March 2010

Hi Krissy. Man it sure sucks when you get news that scares the crap out of you. I remember when I was on the table, right after my biopsy...I was in total shock and the technitian whispered to me, "Head's up...it's highly suspicious" ARE YOU KIDDING ME? I ALMOST CRAPPED MY PANTS RIGHT THERE. She had no right to really say anything as this was not her position to do so...having said all of that....she was right.

I was originally Her2 equivocal (middle area) and so I had to have what is called the FISH test. The FISH test revealed that I was actually Her negative. If I was positive, I was going to take chemo...and absolutely hated the thought of it (my oncologist agreed and my research supported the plan). I am PR and HR positive (100%) and my tumor is grade/stage 1. No lymph gland involvement. Because my test ultimately was negative, I won't be doing chemo. I am doing radiation and will be on a hormone blocker (to starve the crap out of my cancer) called tamoxifen. I will need to take tamoxifen for about 5 years. That is pretty standard.

You are young...very young and there is no darn way you should even have to be dealing with this crap...but you have to because it happened to you. You didn't cause it to happen...it just did. Throw whatever you can at this sucker! In my experience, cancer seems to be more aggressive when the victim is younger for some reason. It is ultimately your call...because it is YOUR life. The more information you get...the more you will know exactly what it is you need to do to beat this thing. You can do it! We are all here for you...don't give up and keep putting one step in front of the other. Get more than one opinion from a qualified oncologist. You're worth it!

ananda8 · March 2010

You can see my Dx below. There is one error in the description. It says I was Her2 negative when in fact the FISH said I was Her2 borderline. (I can't figure out how to put that in the form) My tumor was 2.4 cm. My oncologist called the lab to find out what this meant since it seems it is fairly rare. I think one other member on this site is borderline. My ER/PR was strongly positive.

Herceptin causes congestive heart failure in significant percentage of women who take it. This varies in severity and I am sure you can find out more on other threads and on this link. http://www.breastcancer.org/treatment/targeted_therapies/herceptin/side_effects.jsp

I had a long talk with my oncologist and I decided to decline chemo. I did have radiation. I am being watched closely for possible recurrence. I have had two biopsies for suspicious areas since my surgery. While waiting for the test results of these biopsies, I have had opportunities to revisit this decision. I would not change my decision.

You, with guidance from you oncologist, must make this decision for yourself. How will you feel if you turn down herceptin and you cancer recurs? One of the questions you should ask your oncologist is how differentiated were the cells of you tumor.?

This term describes how mature the breast cancer cells are compared to normal breast cells. Well-differentiated tumor cells that are mature look a lot like normal breast cells and tend to grow slowly. Undifferentiated, or poorly differentiated, tumor cells do not look or work like normal cells. They grow quickly and have a tendency to spread.

Here is a glossary of terms. http://www.breastcancer.org/dictionary/d/differentiation_t.jsp

I was 61 years old when diagnosed. You are half my age. I had moderate differentiation but I also had 8 nodes tested and all were clear. It is a numbers game. One of the numbers that you need to consider is your age.

Get your Vitamin D level tested and take Vitamin D3 supplements until you can maintain your blood levels above 60ng/ml. Do this regardless of your decision about herceptin.

KC71579 · March 2010

Hi notself

I had a long discussion with my breast surgeon last night. Although he is not an oncologist (I am seeing one next week), he is strong in his belief that I am not a good candidate for Herceptin or chemo based on all the other scores in my pathology report. I am moderately differentiated, very strongly HR+ with ER+ being 98% and PR+ being 90%. My Ki67 is <5%. I also have no node involvement and am Grade 2. My biggest IDC is 4mm. He is firm in his belief that the good outweighs the bad in my case. He said that herceptin and chemo, though considered "added insurance," will probably do more harm than good to my body, but he did tell me that a medical oncologist may look at me and definitely push for herceptin (and since Herceptin is not given without chemo, both). This all remains to be seen when I see the oncologist. I also spoke with another trusted family doctor (though he is not a breast expert, but a surgical urology oncologist), he fully concurs with what my surgeon is saying. This man saved my father's life when he had stage IV prostate cancer with a poor prognosis and beat it. In a time when it is hard to trust anyone, I value the input that he was able to give me. Unfortunately, I know that I am one of those cases where not much is known about long term effects/prognosis. So, it's a numbers game and a guessing game at best. I know when I have all of the information, I will make the right decision, not out of fear, but the best thing for me to do to treat what I have right now.

Thanks so much for your input

Jaimieh · March 2010

Krissy~ I hope that the oncologist can give you some answers. ((bighugs))

marcy4 · March 2010

I just found out I am triple positive as well with Stage 3 cancer and 3/16 lymph nodes. I meet with my oncologist March 18. My surgeon suggested I will have radiation to the breast only, chemo and am a good candidate for hormonal treatments. My question is.... If you have homormal therapy do you usually get a lighter dose of chemo. My cancer is also grade 3.

Thanks for any info you can provide. I am feeling very optomistic about the treatments that are out there for me. I am 51 with 4 children 12, 10, 9 and 7 and want to be around for a long time.

ananda8 · March 2010

Krissy,

I am on Arimidex and you most likely will be as well. Have your doc check your Vitamin D3 levels as well.

Marcy4,

I don't know anything about chemo in relation to hormonal therapy. You might want to post your question on another thread in addition to this one.

KC71579 · March 2010

Hi Ladies

So I wrote to the John Hopkin's University experts. They said hormonal and radiation a given for me, but not so sure on chemo either. Tumor is small GOOD, very ER+ is GREAT! FRUSTRATING!!! All the stuff I've been told already. Oh yeah, and they mentioned that I am very young, as if I didn't already know this...LOL! If I were a little older maybe (?) this decision would be a whole lot easier. I didn't even get to have my wedding yet, planned in Jamaica for this July.

Thanks for the hugs Jaimie! I can use them all

Bad news now maybe?

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