Went with 20 year old to dr. today..advice

[micheleu]

Ok, I'm still realing from this day. I went with family to visit the dr. today. Was shocked what was coming out of his mouth. Found out she is stage 4 hormone positive Her2 neg. BRCA not done yet. It is mostly in her bones. Sacrum and along the spine and ribs and possibly shoulder. Small spot in liver but they are not sure about that spot being cancer. I asked dr. about stopping her birth control, which she was still on and i told her to stop, and he said NO!!! That started it all....He then told her to start radiation and Tamoxifen and that's it!!! I understand where he was coming from with quality of life...but she is 20!!! The family is going for a second opinion friday with a breast cancer dr. I told them to not get the radiation tomorrow because that would kick her out of any clinical trials if they decide to do that. Opinions here. The scan also showed a 6cm tumor in breast and lymph node involvement. Does anyone know of any trials for her? thanks!!

[ElaineM]

I think most doctors may not have alot of experience treating a 20 year old with breast cancer, so getting a second opinion seems like a good idea. The experience and knowledge of two doctors might be beneficial. If the second doctor is a breast specialist that would even be better. Hugs !!

[karenann]

I agree, she should stop the birth control pills and I would ask to get the tumor out of the breast!!! Maybe see how she responds to whatever line of treatment they decide on, but I think getting the tumor out is important.

[Believe51]

I am speechless and unable to offer anything else but prayers for this young woman. I send them to you too, Michele and add that it is a gift for her to have such a woman on her team. Wishing only the very best.>>Believe51

[schoolteacher]

Michele,

I am like you. I would stop the birth control pills and her cancer being estrogen driven. Let us know what happens with the second opinion.

I will be praying for her.

Amelia

[Carolyns]

I had breast cancer the first time at age 32 and was ER+. I was told to stop the pill right away.

My best advise would be to get this young lady to a major breast cancer center where they treat many young women with breast cancer. She does not have to continue treatment far from home but her best chance is to have the most experienced doctors evaluate her case. She is a very rare case and needs special consideration. Even if it takes a few weeks to get this done. At the very least her local doctor should consult with a major breast cancer center treatment doctor.

I agree with you that she should not proceed with any treatment just yet. There is time and this will most likely be her most crucial decision... She needs the best doctor with the most experience.

Love, Hope, Peace, Carolyn

[WomanofSteel]

I would definitely get a second opinion and even a 3rd if necessary. I think the pill is a major no-no. It should be stopped. Saying a prayer that you get better answers from the next doc.

at a minimum she should go to an NCI designated cancer center (Univ of Nebraska at Omaha is one, I think).

[jml]

Wow and YIKES! How fortunate that this young woman and her family are able to turn to you for guidance - this is some pretty rough terrain to have to maneuver. And now, not only do you have to get her on the right track, you probably have to do damage control after that very strange & unorthodox consult with the 1st doc! It sounds like he's already written her off. Or he's so poorly versed in current BC treatment he doesn't know what else to say!
Definitely go to a BC specialist - someone who treats BC all day, every day!
Maybe you can remind the family that while treating the BC is obviously an urgent situation, it's not EMERGENT - meaning, there's certainly enough time for them/her to get all the information needed before committing to any treatment decisions. Knowledge is power.
I'm inclined to think that since the primary tumor is so large and she is advanced, they'll encourage her to start on neoadjuvant chemo before considering any surgical intervention.
Praying for her, her family & you too!

[Carolyns]

Also, on the Her2 Negative portion. A major cancer center may way to re-evaluate her sample to verify the Her2 status. This could greatly change things quickly if she were found to be Her2 positive.

I hope that you can convince them that time is on their side and knowledge is power. Get the best minds working on this so this young lady can live a long and productive life.

PS - I have a friend who was in her 30's diagnosed with Stage IV out of the box. She is Her2 positive. Anyway she got into a trial and has never had surgery or radiation. 3.5 years later she is NED. It can happen.

[karenann]

I am praying for good treatment and positive results for this young woman. She is so very lucky to have you, Michele on her team.

xo,
Karen

[SuThorn]

Michele-

I am so sorry to hear about this young woman. I was Stage IV from initial diagnosis at 36 years old. She is obviously much younger than I was, but I can tell you that the first thing my surgeon told me to do was to stop taking my birth control pills due to being ER+. I chose to be very aggressive in the beginning and had chemo and bilateral mastectomies. If you have any questions you are welcome to pm me.

In the mean time, you are all in my prayers.

Regards, Suzanne

[Soccermom]

Three words,Michelle...
M D Anderson

http://www.mdanderson.org/patient-an...ast/index.html
Seriously. Angel Flights can provide transportation for her and one caregiver..
http://www.angelflight.com/

discounted or free housing in Houston...
http://www.nahhh.org/lodging3.php?ci...43&state=Texas

[mamacze]

Hi Michelle;
Yikes - what a huge burden - for you, your family and this dear young child who must feel like she has the weight of the world on her shoulders.

I would either fly to MD Anderson or Dana Farber. I attended the Metastatic Breast Cancer Network annual conference there in May (www.mbcnetwork.org); and this speaker is an oncologist who ONLY treats young woman with cancer - she was incredible and insightful - I would fly halfway around the world to see her and when it comes to your life; how big a hit is a flight to Boston for a good solid second opinion? Her name is:
Ann H. Partridge, M.D., M.P.H.
Director, Program for Young Women with Breast Cancer
Dana-Farber/Brigham and Women’s Cancer Center
Assistant Professor of Medicine, Harvard Medical School

Also, I would run to check out the Tumor Vaccine Group clinical trials in Seattle - I flew there from Connecticut - 8 times (check out angel flights; noted in above post); if she is not eligible for their clinical trials (which for me any way had virtually NO side effects), Dr. Disis can recommend a clinical trial in Baltimore.

Don't take the tiger by the tail; RIDE IT...God speed to you all - stay in touch please.
Love Kim from CT

[Soccermom]

Michelle,
I got some additional info from YSC which I emailed you,
M

[Ruth]

Michele ~ This is just devasting news. I don't have any personal knowledge of trials. Have you thought about Young Survivors Coal website? They might have someone to help answer questions. They have unfortunetely quite a few 20 year olds posting there. I'd be glad to help as I also post there but don't know the specifics.
Hugs to you ~ Ruth

[Rich66]

Regarding surgery,

1: Med Hypotheses. 2009 Jun 9. [Epub ahead of print]
Primary tumor resection may improve prognosis for nonoperable advanced breast cancer.

Zhang N, Yang Q.
Department of Breast Surgery, Qilu Hospital, Shandong University School of Medicine, Wenhua West Road No. 107, Ji'nan, Shandong 250012, PR China.
Breast cancer has become a powerful killer worldwide that leads to the most global death among women, especially, the nonoperable stage IV breast cancer attracts lots of attentions for its difficulties of treatment. Recently, accumulating evidences hold a promise that resection of the primary tumor can improve the survival of patients with stage IV breast cancer. In order to explain its possible mechanisms, we took a deep insight into the existing rationales and focus on the crosstalks between them. We proposed that breast stem cell niche plays a significant role in the metastatic facilitation. On one hand, cancer stem cells in the niche can express productions making it more adhesive to the metastatic site. On the other hand, the niche has a positive effect on the cellular quiescence accelerating metastasis. Based on the cancer stem cells niche theory, we hypothesized that resection of the primary tumor may be a new avenue to improve the survival and the quality of life for advanced breast cancer patients.
PMID: 19520521 [PubMed - as supplied by publisher