Diagnosed with IDC, stage 1, grade 1,Nottingham Combined Histologic score of 4, er+ and her2+ breast cancer. P53 is negative. Had segmentectomy, 2 sentinel nodes biopsy, and 4 non-sentinel axillary nodes dissection -- nodes negative and clear margins. IDC removed at biopsy was 1.3mm and removed at segmentectomy was 0.15cm. Also DCIS removed -- 3mm at biopsy and 6mm at segmentectomy. Projected trtmt. is 6 weeks rads with 1 week boost and tamoxifen for er+. Nothing is being done to address her2+ status due to the small size of my cancer (cancer was calcification, no lump). I know that her2+ is aggressive -- should I be concerned, seek another opinion, etc? Needless to say, I am concerned and frightened.
As you probably know, stage I is good, grade 1 is good, no lymph node involvement is good, clear margins is good, a small lesion is good, and hormone receptor positive status is good. That's a lot of favorable factors, which taken together, should lessen your fear.
The only less favorable factor is your HER2+ status.
At the 2008 San Antonio Breast Conference in December, new data showed a higher than predicted rate of breast cancer recurrence even with very small breast cancers that are HER2 positive. The data was from the first large study to analyze early-stage breast cancer patients with HER2 positive tumors one centimeter or smaller. It concluded that such women would benefit from adjuvant Trastuzumab, also known as Herceptin, (for one year, the standard in America) - along with adjuvant chemotherapy. This represented a shift in the way women with early-stage HER2 positive breast cancer should be assessed for risk of recurrence and considered for treatment, according to the study's author.
On the other hand, some experts debate this advice in a woman with a small breast cancer, and recommend against such aggressive treatment.
To further complicate the picture, while HER2+ cancer cells generally tend to be highly aggressive, yours are grade 1 (nonaggressive).
I think it would be an excellent idea to get a second opinion regarding your specific case, to address your concerns about the issue, and to help you feel more at ease with whatever treatment plan you decide upon.
I'm so sorry to hear about your cancer diagnosis. I can certainly empathize with your fears and concerns. That's a perfectly normal reaction and one we've all dealt with. As bluebutterfly indicated, your path report certainly does give you reason to be hopeful along with your concerns. She gave you excellent advice and is very knowledgable from my experience. I would definitely follow her advice and agree 100% with getting another opinion. You have a right to a second opinion and any good medical specialist should have no problem honoring your request. If necessary, get a third opinion! You need to make the treatment decisions that are right for you and the more information you have to do so the better. Whatever your choice is, I wish you all the very best and hope for a good outcome. Please let us know how you're doing if you wish by adding a note to this thread. We do care.
Sending you a big hug from Michigan ( ),
Thank you so very much for your post! I sincerely appreciate it. I waited to reply until after my visits with onc. and rad.onc. Met with onc. day before yesterday and then had a full day yesterday (met with G.P., rad. onc., and surgeon). After all these appts., am as confused, concerned, and frightened as ever. Onc. stated radiation followed by hormone therapy due to size of cancer, no lymph node invasion, and grade of tumor. Felt that the her2+ status was not a major player in my cancer trmt.
Next day (yesterday): G.P. concurred with onc. however, wants a second opinion and is going to schedule an appt. with a well-known cancer hospital. He felt that my onc. trmt. plan was correct for me but would rest easier with a second opinion.
Then went to rad. onc. who concurred with onc. recommendation of rads and hormone therapy UNTIL she conferred via text msg. with another onc. who recommended oncotype and Herceptin -- no hesitation whatsoever. So she then was not so certain of my treatment -- did not schedule radiation trmts., sd. she would confer with other colleagues, and will see me again in January.
Then went to surgeon for follow-up check on my surgery site progress. He is such a wonderful person, so calming and reassuring. He said that he had not and would not change his recommendation of rads and hormone therapy. Did not believe the small increase in prognosis using Herceptin outweighed the possible side effects of it for my cancer.
So here I am once again. Completely at a loss as to which course to take and what to do.
My G.P. just called and I believe he is going to order an oncotype.
All the unknowns of this are about to blow my blood pressure out my ears. :) It has been elevated at every doctor visit and I have never had a bp problem before. The stress and emotional toll of this "on the fence, off the fence" is getting out of control. I was all prepared/psyched up for rads and hormone therapy until yesterday.
I am leaning toward my surgeons recommendation of rads and hormone therapy. He based this on the favorable factors.
I will post again as events unfold.
Again, thank you so much for taking the time to reply, for your understanding, and caring.
Thank you so much for your reply! At present, I am no further along or reassured about the correct treatment plan for me as I was after my surgery the end of November (please see my reply to bluebutterfly for details).
It would appear there is no easy answer for me. I trust my G.P. and my surgeon's opinion so unless an oncotype dx strongly tells me otherwise, I am leaning heavily on their opinions of rads followed by hormone therapy.
So confusing and I'm afraid I will make the wrong decision and live (or not) to regret it.
I am soooo sorry for all the confusion and differing opinions you are faced with!
The sudden dx with BC is overwhelming in and of itself, and the lack (so far) of a clear-cut tx recommendation can only add to your stress...
As I mentioned above, the information I have seen from "the experts" does recommend aggressive tx:
Published in Journal Watch Oncology and Hematology September 27, 2011:
"The beneficial effects of trastuzumab are long-lasting in patients with HER2-positive, early-stage breast cancer — and trastuzumab's risk-benefit ratio unequivocally favors the use of this agent in patients with HER2-positive tumors."
From Dr. Susan Love's Web site:
"At the 2008 San Antonio Breast Cancer Symposium researchers presented findings from several studies that will help guide the treatment of women with HER2-positive tumors.Ronjay Rakkhit, MD, from the University of Texas M.D. Anderson Cancer Center, presented findings from a large study of women with tumors that were 1 cm or smaller and had not yet spread to the lymph nodes. The study found that the women whose tumors were HER2-positive were more likely to have a recurrence than the women who were HER2-negative, regardless of age, or tumor grade or stage. None of the women had received chemotherapy, as it is not standard treatment for women with early stage breast cancer. But this study suggests that for women with HER2-positive tumors should consider adjuvant chemotherapy with Herceptin, even if they have a very small tumor."
However, your specific case may put you at a different level of risk for recurrence, and the Oncotype test may well help clarify that.
Whatever you decide, keep reminding yourself that your BC was found at an early stage and that most of the factors in your case are favorable.
I'm also sorry about all the stress you're under with the questons related to your treatment. I, too, hope that you get some clarification and resolution from the Oncotype test. You have to put your faith in the hands of the medical professionals and trust their judgement. It sounds like you feel good about your GP and surgeon, so you have to believe that they have your best interests at heart. You don't give your age, but I wonder if that might have some bearing on the recommendations? In any case, you need to do what feels right for you, so I hope you can get to that point soon, if only for your peace of mind and your blood pressure's sake! :o)
Good luck with getting additional answers and good results with your treatment. Our thoughts and good wishes are with you.
Thank you for reply! I am 56 (my surgeon says I am young). :)
I have an appointment with an oncologist on the 31st. She is the doctor my G.P. has chosen for another opinion. She was trained at the large cancer hospital that I referred to in an earlier post but is now in business with oncologists. G.P. has referred other patients to her and wants her opinion so he can factor it all together. I do trust my G.P. and my surgeon -- the oncologist and rad. oncologist are new to me so I can't say that I have developed a level of trust yet. If you don't mind, I would like to post after all recommendations are received. My onc. is going to present my case to the local hospital's breast cancer committee/review in January and the radiology onc. should have additional input when I meet with her early January. I just feel that I am wasting valuable time with all this indecision but my surgeon's nurse was very reassuring when she told me that I was too new post-op for radiation to begin. However, my surgery was on 11/28 so I know time is getting close to start something.
Thank you to everyone who has read my posts and special thanks to you and bluebutterfly for replying with encouraging words and well wishes. It means so much to me.
You ARE young----I'm 64 and I'm young, too!!! :o)
I think the fact that your case will be reviewed by the breast cancer committee is great---the more medical minds providing input the better, I think. This should give you a pretty definitive answer on treatment guidelines---I hope so at least. I wouldn't worry about treatment not starting yet---I'm sure if there was a need for qucker action, you'd have it. We'll definitely look forward to hearing from you and wish you all the best.
Hang in there!
All this indecision is getting out of control. My g.p. and pathologist both felt that an oncotype would be a good thing for predicting reoccurrence rate. However, felt that my oncologist should order the test. Well -- he just called me and was just short of irate that I would want this test. Stated that he told me at our first (and so far only) appointment that he wouldn't have ordered this test (assuming someone else had already done so) and if they hadn't that he wouldn't. When he called today he told me that if the test was ordered and it came back that I needed chemo that he would have no choice but to order chemo and that as he told me before "I don't need chemo". He was abrupt and short in his conversation and quite honestly I would not continue to see him but there are no options -- small area with only he and his partner to choose from. I hate to think that I am at his mercy for 5 years of hormonal therapy. So sad and so very disheartening to add this to my already emotionally laden situation. He is absolutely against Herceptin and apparently anything that differs from his already formed opinion. He told me that "I told you I would present your case to the cancer board". I said yes and told him that I appreciated his doing that. And then said that he could guarantee me that all 4 doctors would have the same recommendation as his (rads and hormone therapy). He was very curt regarding my interaction with the rad. onc. stating that "she is a radiologist, not your cancer doctor and she doesn't make any decisions or suggestions. Her job is to give radiation". Wow -- hit a nerve somewhere!
I just think the whole situation stinks and I wish I could go elsewhere. A neighboring city (approximately same distance from me) is an oncology option but it is not where my g.p. is located and combined with the fact that I am now 4 weeks post-op, I don't think I can start over with another onc., rad. onc. etc.
He also questioned when I would be seeing the other onc. for a second opinion (my g.p. made this apptmt. and called the onc. to make certain it was okay with him for me to seek a 2nd opinion). I told him the appt. date and he then said to discuss this with that doctor and IF this doctor recommended anything different that his recommendation for treatment to have her call him and tell him the reasons.
bluebutterfly, what are your thoughts on this? My husband and I have been in such emotional turmoil with this and now to have this interaction with a doctor that I am essentially entrusting with my life -- we are ready to just give up and say do whatever you want.
Boy, you seem to be going through a prime example of "Murphy's Law " (Anything that can go wrong will go wrong...) when it comes to cooperation among your tx team members!! :-(
I can't know what's best for you, but I do know I couldn't rest comfortably in the care of ANY doctor so abrupt, controlling, closed-minded in regard to other opinions, demeaning of other doctors, etc.--much less a doctor who would be treating (or NOT treating?) my cancer on an ongoing basis!
I'd go ahead with the appt. with the 2nd opinion, and see what that doctor has to contribute--and whether s/he might be more comfortable to work with? I don't think where your various tx team doctors would be located is as important as how willing they are to consult with one another on your behalf to come up with the best plan and to monitor your progress. (Phone calls can be arranged and results e-mailed from one city to another as easily as from one office to another...) And since your cancer was found at a very early stage, I would think getting the "best tx" (whatever that turns out to be) would be more important than how fast the tx commences, but the doctors you trust the most would be the best source of advice about that.
Please keep us posted regarding what you are able to get worked out.
How sad! :o( I truly feel bad for you and your husband about all that's going on and can certainly understand your frustrations. I'm sorry your oncologist "got his undies in a bunch", so to speak, and I'd certainly be considering another oncologist. Even if your GP isn't in the same area, as bb said, they should be able to consult and communicate. I'm planning to get a BSGI for my LCIS and it's only available at a totally different health system. My onc has no problem referring me there and will communicate with the radiologist if necessary. He's so kind and understanding and I'm really grateful for that. When I was first diagnosed, I went to a partner in the group who had cared for my father-in-law when he was dying from leukemia. This doctor actually hand wrote a sympathy note to us when Dad passed away! He's since left the practice, but his partner is just as
kind and sympathetic, so I feel blessed in that regard. I hope you can find someone like that to care for you---it's hard enough facing cancer, but to face it with someone like your current onc is extra-hard.
I hope your appointment with the 2nd opinion doctor goes much better. Even if her opinion is the same as your current onc, the breast cancer review board, AND your radiation onc, I would still consider keeping her over your current doc. From your description of him, I don't see how she could be worse! We keep wishing you luck and it doesn't seem like you've had much, but maybe this time will be it! We sure hope so! We'll look forward to hearing from you.
Hi to bluebutterfly and to nc!
Thank you both for your replies!! Wanted to update:
I saw the onc. for a 2nd opinion and she is the greatest -- eventhough a considerable drive to see her, she is now my oncologist. She felt that based on the size and characteristics of my cancer that rads and hormone therapy were not definite requirements in my treatment. However, she said she would strongly urge me to do both just as added precautions. She told me that my cancer was rare (size, grade, and her2+) and that I was in a "gray" area -- just weren't enough women in my category to have had any clinical trials. She said I was not a candidate for chemo and therefore, not Herceptin.
So had my CT today and have little dots and lines all over my chest. (I am having rads at local hospital/cancer center). Will have sim. next Wednesday and begin rads the next day. Will have 5 1/2 weeks followed by 1 1/2 week boost. Will begin Tamox day after last rad. trmt.
Now I at least have a plan and believe that it is the right one for me at this time. I feel more peaceful now and am looking forward to making progress in my treatment.
Again, I want to thank you both for your reassurances, concern, and caring. I was so lost, confused, and frightened when I posted on this site but you both helped me so very much. I will always remember your kindness.
Terrific!!! SO happy to hear you like your new onc and have a treatment plan---like bb, I'm wishing you all the best with your treatment and many years ahead without cancer being any part of it! If you get a chance and want to update us, please do!
I would never stay with a doctor that makes me uncomfortable! I was diagnosed in November 2012, had lumpectomy on Dec 12, now 4 weeks post up, have seen the radiologist and he says 6 weeks radiation, but will not start until I see the oncologist because he thinks that I will need some Chemo first! The oncologist have been slow in making an appointment but finally got one for January 17.
I will also be going to MD Anderson in Houston for second opinion just for my peace of mind. But if they suggest a normal protocol, I will be taking all treatments locally!
Always do what ever you need to do to keep your mind at much at ease as possible!
I'm new to all of this also and I'm learning to take one day at a time!
Glad to hear you now have an appt. date with an oncologist!
As you and japdip have discussed in your own thread, the waiting is always difficult and seems to come into play with almost every step of this "journey,"
so it's good you're learning to take one step at a time.
And thanks for taking the time to encourage other newer members!
Please update us after you see the oncologist, by adding a post to your initial thread (so that all of your info will be available to us in one place).
Thank you for your post! It sounds as though you were diagnosed close to the same time as me. I hope all goes well for you!
I am a little nervous (the unknown usually has that effect) about starting radiation but I like and trust my rad. onc. so I'm hoping for a good outcome. The CT scan made my tummy queasy for a couple days, so hope the radiation treatments go smoothly.
I am so pleased that my g.p. set up my oncologist 2nd opinion appt. because I'm thankful I have her as my new oncologist. It is a relief just to have a plan and move forward.
For my emotional and spiritual peace, I rely on my faith that received an unexpected boost from a dear friend who sent this quote:
"Pray, Hope, and Don't Worry. Worry is useless. God is merciful and will hear your prayers. Prayer is the best weapon we have. It is the key to God's Heart."
I printed this quote and taped a copy to the headboard of my bed, another copy is taped to my bathroom mirror, and another is taped to the notebook that I carry to all my doctor's appointments. It is also committed to my memory and I say it to myself often.
Again, thank you for your post and to bluebutterfly and nc. Your caring has meant the world to me.
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