Newly diagnosed with Stage IV Metastatic breast cancer

Anonymous

Newly diagnosed with Stage IV Metastatic breast cancer

Mary6886

hey there! I am a 52 year old female and I was just diagnosed with Stage iV metastatic breast cancer- spread to my bones. I don't know the extent of the spread. I was only diagnosed with breast cancer about 10 days ago and now the PET scan showed metastasis. I meet with the oncologist Monday morning. I am terrified to learn the full extent of the damage but I want to know so I can make an informed decision about treatment. I welcome any advice regarding what I should ask the oncologist and what to expect.

Thank you in advance!

Mary6886

Sadiesservant

Hi Mary,

I'm so sorry you find yourself here. I can only imagine what a shock it is. Sending you a virtual hug.

I know my friends here will chime in but first you will need to ask about the specifics of your cancer. Breast cancer is many diseases and treatments depend upon the dynamics of each. Is it estrogen positive? HER2 positive? This will drive decisions. If you don't have tissue you may want to ask about a biopsy to try to get those answers.

I would also recommend that you reach out to Bestbird, one of the long time Breastcancer.org members who has put together an amazing resource for those of us facing metastatic breast cancer. If you search her name you can send her a private message and she will tell you how to get the guide.

You have come to a good place. You will find much support here. Please know there are many treatments that can keep things stable for a very long time.

3-16-2011

Hi Mary

So sorry you find yourself here but hopefully you will find some good support here. When I was first dx I was able to meet with a rn cancer navigator. She gave me so much information about my specific cancer and treatment options.

This was provided by my cancer center, funded partially by American Cancer Society.

Best birds information is very helpful as well.

I wish you peace in this time. For me it did get emotionally more manageable once I had a treatment plan.

Peace

Mary

Snow-drop

Hi Mary, I'm so sorry you joined the MBC club, you are smart found this forum so quickly. I diagnosed with breast cancer September last year, soon I understood it has already metastasized to spinal bones.

First session with oncologist is more like educating meeting, s/he will tell you all details you need to know about the disease, don't worry if you forget something, there are many resources that you can rely on any time.

Your oncologist will order biopsy pathology test to study tissues under microscope to see if the cancer is hormone receptor positive or negative and how far cancer cell is similar to normal cell and in which speed they grow, if the tumor is in duct or in other tissues. Then pathologist will able to grade your cancer. This information will help your oncologist to make decision on your right treatment. If your oncologist gives you options, ask for benefits of each treatment based on your current condition. I would suggest to leave it on your oncologist, see how first meeting goes and don't ask dr Google! Standard treatments for MBC are: hormonal therapy (if it is hormone receptors positive or in short HR+) and/or targeted therapy. And Because it spread to bone, bone strengthener might be an option. The good news is that there very effective medications are available for treatment mbc.

First few weeks you will bebusy with different tests and reports. Make sure you get a support group from family/ close friends. I did not tell my family until my pathology results back, please don't do that to yourself. It is always nice if you have a close one near you.

Believe me MBC treatment is more straightforward than lower stage. Update us about your treatment then we can navigate you to related threads. I learned a lot about my disease in this forum. Feel free to reach out if you have any questions.

Best wishes.

Anonymous

Hi Mary,

So sorry you have to join the club - some of us know only too well how awful it was trying to regroup from first the diagnosis of cancer and then the mets diagnosis. It really does get better, though, even with a Stage IV diagnosis, once you get a grip on all the terms, treatment regimens, and what works for you.

For the discussion - you may want to take someone with you to write things down or ask to record the session. Make sure you find out - the grade of cancer, the type of cancer (IDC, ILC, etc), and its hormone receptor status (ER, PR, HER, etc). You may also want to find out how extensive are the mets and if there are any areas that may need to be managed - some ladies need their hips or femurs reinforced, or radiation on a few spots if they are causing pain.

Best not to ask prognosis, and in fact no doctor has ever given me that info and has relied on the ol' 'we treat it as a chronic disease' line and 'with management it can be many many years'. I just don't think about it and live my life the best I can every day. Also, don't Google - stats are way out of date given some of the drugs and regimens that have developed in the past few years. Ive been on my regimen for 8 months or so and my last scans showed almost all my bone mets resolved, and the large one in my pelvis which was causing so much pain (and was radiated) is almost completely healed.

Finally, be prepared that they may say that the main breast tumor will not be removed, or at least not at this time. This is somewhat standard protocol for Stage IV de novo patients. That freaked me out a bit at first, but it was explained that they wanted to get a lid on the cancer first before considering surgery (which carries its own risks).

There is a special thread for the de novo ladies on here - do come join us there. I wouldn't say we are completely unique from the rest of the Stage IV ladies, but it is a smidge different being treatment naive to those who metastasized after an initial diagnosis and treatment at a lower stage. If you go back a page or two on this board you will find it.

Sunshine99

Hi Mary - like the others have said, I'm sorry you've received this Stage IV diagnosis. One piece of advice I have is to not freak out if you hear the doctors use the word "palliative". I heard the nurse for the radiation oncologist use that term for the radiation I would be receiving. I thought that palliative meant that you were dying and that it was that same or very similar to hospice. It is definitely NOT the same thing. Palliative, while not intended as a cure, is meant to control some of the symptoms - in my case pain in my hip and spine.

You will probably have a team of oncologists along with a surgeon:
MO - Medical Oncologist
RO - Radiation Oncologist
OO - Orthopedic Oncologist (depending on where the bone mets are)
BS - Breast Surgeon

Together your team will put together a treatment plan for you as the results come back for hormone receptor status, extent of the mets, etc. You will hopefully start to feel a little more in control once you have a plan in place, but there's no rule book to tell you how you should feel! And to the people who tell you to think positive and you'll beat this... actually, I haven't quite figured out what to say. It depends on the person saying it. I've just told one woman that thinking positive doesn't cure cancer. Anyway, just had to throw that in.

My MO asks how I'm sleeping and has offered help with sleep or anxiety if I need it. So far, I've haven't needed anything more than Tylenol PM and Z-quil at night, but I know meds can be helpful for some.

I wish you the very best. Come back for support and information here. I have personally found it to be very helpful.

moth

Mary, sorry you find yourself here. It is such a whirlwind at the beginning with testing and that sucker punch feeling in the stomach in between. Hang in there, it gets better, and we have a great group of people here to support each other.

exbrnxgrl

I have lived (save for a 3 1/2 medical leave from work) fairly normally for 9 years with mbc (bone). I have done no special diets, protocols or major lifestyle overhauls. I am not overweight and have lived a healthy existence for the most part. No one knows why I have had no progression since original tx. Ibrance/Verzenio were still in trials when I was dx’ed so I never started on them nor have I done IV chemo. Neither my doctors nor myself can explain why I have done so well. Thus, I have no advice (everyone has given you some important things to think about) but I hope to offer some inspiration. I understand that I am the exception but take adeep breath and know that there continue to be advances and I see more members living long with stage IV than I did 9 years ago. Wishing you the best.

Mary6886

Thank you so much for the informations and kind words. I know the cancer is Estrogen +, Progesterone +, HER -. The doctor originally said the breast tumor was a grade 2. I have since learned that the cancer has metastasized to my bones- Breast bone, two ribs, hip and vertebrae in the sacral region. I meet with the oncologist tomorrow morning and will get more information and, I suppose, develop a new treatment plan. I am so glad to have the support of this group.

Katrose

Hi Exbrnxgrl,

Thank you for such an inspirational post! I'm just joined the breastcancer.org forum. I've just recently been dx'd with bone mets (June 2020), which were detected early due to my MO running a CA 27-29 test since my original diagnosis in 2009 at Stage IIIB. I just started Ibrance and letrozole; however, after finishing 28 days of Ibrance, my WBC dropped to 0.9, so the Ibrance has been on hold for the past two weeks. I was concerned that 2 weeks was a long time to be off that medication; however, after reading your post and "talking" to Spookiesmom and I-beat-it, I'm feeling much better about my treatment plan.

Thanks so much for sharing your story!