Start treatment ASAP or get 2nd opinion?

pugzilla101

My mother was just diagnosed (21 Jan 2020) with Stage IV Metastatic Breast Cancer. She is 57 years old. The cancer is in her right breast and spread to her right lung and lymph nodes in her chest. The breast cancer is triple negative and this is her second diagnosis of breast cancer. Her first diagnosis in February 2017 was Stage 2B Triple Negative Breast Cancer also in her right breast. She went through chemo, a mastectomy, radiation, and was cancer free for two years.

I am utterly devastated to hear the news and the doctor estimates she has 5 months left. The doctor is running an additional test for the cancer, that if it comes back positive, can provide a better outlook on chemo options. If it comes back negative, then things don't look as good. I apologize if I don't have all the details yet to make the diagnosis more precise, I'm sure I'll learn more over the coming days. I'm in the Air Force and stationed in Texas while my mother lives in Missouri. I'm making arrangements to see her ASAP and ask a bunch of questions with her doctor.

I'm struggling to cope with the news as my mind races from the shocking poor prognosis and how this all happened so quickly. She had a mammogram back in July 2019 and they found nothing. It blows my mind how it went from nothing to Stage IV mets in 6 months. My mother is being cared for by my step-dad who is doing his best to make my mother as comfortable as possible.

My main question comes in my search for hope and options to get more time with my mom. Is it more important to start chemo treatment ASAP or should we get a second opinion in the hopes of access to more chemo/clinical trials? I read posts about people with stage IV mets having a poor prognosis but getting great responses to chemo and living years longer than expected. My mom should begin chemo treatment next week at the University of Kansas Cancer Center.

I live in San Antonio, Texas and wonder if MD Anderson in Houston (or San Antonio) would be a better option for her. Would it be worth the time to get her seen at MD Anderson? I have no idea how long it would take for them to diagnose her, let alone if they have access to better options for her. I fear that taking the time to get another opinion would allow her cancer to get worse as opposed to getting her treatment right away near home.

I want to explore any options to get more time with my mom and improve her chances to survive. So I'm reaching out to the community to learn from other people's experiences. I would regret leaving any stone unturned as I struggle with this news.

Update - 27 Jan 2020

Got back from the oncologist's office today to learn more about her test results and chemo treatment. We were awaiting PDL-1 test results for her TNBC and we were happy to find out that she tested positive. This means she'll be on Tecentriq (a new FDA approved immunotherapy drug for stage IV TNBC with a postive PDL-1 test) and Abraxane (chemotherapy). She starts treatment Wednesday with a 3 week on and 1 week off cycle.

We are looking into the COC protocol for additional supplements to give her a more holistic approach to her treatment. Also combing through Jane McLelland's book (How to Starve Cancer...) to get her the proper nutrition plan to combat her TNBC.

Small win today with the positive PDL-1 test to give her a promising treatment option.

Anonymous

it looks like U of K is an NCI designated center, which means they will have access to the latest research and the info on clinical trials. This a vote in their favor..

https://www.kucancercenter.org/about-us/nci-designation

I can share that my own attitude after being diagnosed was “start chemo ASAP”. You can always explore the second opinion while the treatment is ongoing.

Cure-ious

Pugzilla, I'm sorry that you and your mom are are going through an agonizing time and feel there is little time to consider your options. A second opinion at MD Anderson would be my strong preference, as they will have some perspectives and clinical trials that differ from the options available anywhere else. I assume they are able to get new patients into their system quickly. For standard firstline TNBC she probably starts with a chemo plus an immunotherapy drug? PARP inhibitors and sacituzumab govitecan and PI3K inhibitors are also used. Anyway, what she takes in the way of treatment will be more critical for her survival and quality of life, than how soon she starts it. Good Luck!

PS It also seems to be a red flag that the doctor speculated she has five months to live, how would he/she know that?

godisone

Olma61, you can get second opinion at a hospital of your choice while the treatment is ongoing. I really dont understand how it progressed so quick in a matter of months. Your concern is genuine. Let the doctors plan the treatment for your mother and in that duration you can comfort your mom by spending as much time with her as possible. try to understand what and where does she seek the treatment and also how chemo is treating her. I will you all the luck and yes, despite doctor stating months or years people have survived for many years with strong will power, support of the family and appropriate treatment.

ShetlandPony

I too am bothered by the doctor giving so specific a time frame. It has been shown that it is more useful and accurate to hear a range, sort of worst and best case based on similar diagnoses. That allows a person to prepare, but also allows them to hope. Your mom could have a super response to treatment! Does the oncologist (who has already lost points by giving an expiration date) give an opinion on the safety of delaying treatment in order to get a second opinion? On second thought, we don’t like this oncologist; can she get another one?

ShetlandPony

https://www.nccn.org/members/network.aspx

An NCI-designated cancer center (like University of Kansas) is good, but the top of the top are the NCCN centers. MD Anderson is one. Three neighboring states to Kansas have an NCCN cancer center: Buffet CC in Omaha, Nebraska; Siteman CC in St. Louis Missouri; University of Colorado CC in Aurora, Colorado.

Sometimes patients get a second opinion at a place like this, and then implement the plan at an institution closer to home (University of Kansas for your mom). So your mom could consider which of these four would be most convenient for a second opinion and for periodic check-ins. Or see who can get her in the quickest if you guys don’t have a strong preference.

pugzilla101

I want to thank you all for the amazing advice so far. This has been a real inspiration to read this morning.

The information on the timeline and her specific diagnosis details are what she's telling me. I have a ton of questions for the Doctor and I'm sure there are things getting lost in translation as my mom hears all this news. The encouragement on my posts has been incredible and eye opening in the opening hours, and I have a whole new grasp of hope on what her options are!

I plan to update this thread with more details of her condition as I'm seeing there are sooo many variables to care and treatment. Thank you all!

Anonymous

Glad you are feeling better and have some clarity about next steps. I will join the chorus about that five month expiration date. Just no. I didn’t take note of it when I responded. Ignore expiration dates.

Just put one foot in front of the other, with your mom, as she begins treatment and explore all the available options. Wish you the best

exbrnxgrl

pugzilla,

I echo previous responses to your post. Even when it was thought I was stage IIB, I got a second opinion. Six short weeks later, my bone met was discovered quite by accident. I then went for a new second opinion. No expiration dates given. A friend of mine was told, when she developed spinal mets, that she had less than 3 years to live. She found another mo (coincidentally my second opinion mo) who dismissed the idea of an expiration date. She is currently NED. All the best

pugzilla101

Got back from the oncologist's office today to learn more about her test results and chemo treatment. We were awaiting PDL-1 test results for her TNBC and we were happy to find out that she tested positive. This means she'll be on Tecentriq (a new FDA approved immunotherapy drug for stage IV TNBC with a postive PDL-1 test) and Abraxane (chemotherapy). She starts treatment Wednesday with a 3 week on and 1 week off cycle.

We are looking into the COC protocol for additional supplements to give her a more holistic approach to her treatment. Also combing through Jane McLelland's book (How to Starve Cancer...) to get her the proper nutrition plan to combat her TNBC.

Small win today with the positive PDL-1 test to give her a promising treatment option.

Super interested in the COC protocol and Jane McLelland's roadmap for cancer nutrition. If anyone has experiences with either of these, I'd be interested in learning more about how they worked for you. Thanks everyone.

Cure-ious

excellent, Pugzilla!! A very reasonable first-line treatment (and a much higher expectation than five months survival)- just keep MD Anderson in your back-pocket, for when you want to consider clinical trials...

dorimak

pugzilla, a few things. I'm a patient at U of K and being treated for metastatic BC. If your mom is in this area (sounds like), Advent Health in Shawnee Mission has a partnership with MD Anderson and can consult with teams down there. I went there for a while as it was close to home. Had a lot of issues with their administration and billing (and not patient focused) so I transferred back to KU. But, it would be worth trying to get a consultation for a second opinion even while moving forward with chemo

The pathology would be more an indicator (grade etc) that would suggest how aggressive your mom's cancer is, but that fact that she had a clear mammogram is not. I had two separate primary occurrences 2001 and 2005 discovered by myself. Even knowing that cancer was present, they never showed up on mammograms. I went to Chicago in 2001 for surgery and they repeated mammograms and never did anything show up for me but I had presented with lumps that were biopsied.

I do not believe that doctor had any business coming up with such a definitive timeline for your mom. We all know as Stage IV patients that everyone response differently to treatments. To come up with a timeline without even seeing how your mom is responding to treatment is reckless. While triple negative is not so good, she doesn't have extensive disease in her body. I hate to say it but I believe I may even know which doc it is and I will send you a PM, but suffice to say four years ago when I received my current DX, I was transferred to a doc and I asked him why he got into oncology and he said he liked having end of life conversations. I left and never returned to him. I found another excellent MO at KU who I'm with now. May not be the same doc but I know someone else who was treated by him for an aggressive lymphoma and his wife did not like guy. Regardless of who it is, she needs to dump her doc for someone else. It's also a thing that your doctor's confidence in you has a direct impact on how you do. There are other excellent docs where your mom is going. For geographical reasons (was close to work, had moved etc.) I have been at multiple facilities here in town and I believe where your mom is going is the best. It's a university hospital and my RO explained that they're not for profit whereas others like Advent are for profit, and it seems to impact care. I am not on this site much but you'll find an unbeleievably wonderful supportive group here with a wealth of information. Prayers for your mom.