Research, family participation + decisions, caregiving

TigerButterfly · July 2016

Hello everyone. My mom was just diagnosed. It is thankfully early but we will not know any further details until we meet with the doctor next week.

Mom has been through major health concerns before including spine and heart issues. Each time my approach was to research several treatment options - new and traditional - and vet doctors and facilities before proceeding. I believe in being informed and aware before making major medical decisions. Understanding the problem and the many options has really helped before.

My siblings say just let the doctors tell us what to do - that we are not the experts. I'm having a difficult time asking them to actively participate in helping me research and understand this condition, doctors and treatments, as well as insurance complications. Also, we need to look at long-term care options - this is something we have discussed for years but it was never prioritized. I've been the caregiver for various family members over the years so this is not something they were previously involved with.

This time I need their help, and for them to weigh in on the critical decisions that will be made in the next few weeks. At the moment, getting up to speed with a basic understanding of everything and help with doctor selection would greatly help me help mom make decisions. She struggles with understanding medical information and I think it is key that she fully understands and feels empowered about the choices she will make.

Anyone experiencing the same, or have advice? I know my family loves mom very much and really appreciates the care, but most critically right now I need their time. I've suggested we research and make decisions together. I don't feel comfortable with just listening to one or two doctors and following their treatment plans without being aware of a good number of options. Unfortunately - and please chime in if I'm wrong - to my understanding we don't have time to really think and process info and options. A patient care representative I spoke with today said every day matters. So I am asking for all hands on deck.

My most pressing question, if you have a moment: Following consultations, how soon should decisions about treatment be made? Days or weeks?

Thank you for reading.

ElaineTherese · July 2016

Thank you for being such a concerned daughter! I'm sure your Mom must appreciate your support.

Unless your Mom's case is really complicated, I'm not sure you need a "team effort." Options need to be presented to your mother so that she understands them. I think that is where you will be most helpful. But, she needs to make the decisions herself, based on her concerns.

I was fairly young when diagnosed (46 years old). I went to the appointments myself and made my own decisions. Sites like this one were very informative, especially those sites like the Triple Positive Board which were devoted to my variant of breast cancer. My family played no part in it.

If your Mom did indeed catch her cancer early, she has time to consider her options and to get a second (or third) opinion. Only a few kinds of breast cancer (IBC, e.g.) are so aggressive that you need to treat them immediately. (FYI: 80% of breast cancers are invasive ductal carcinoma [IDC].) Heck, I was diagnosed with Grade 3 triple positive IDC (aggressive) on June 28, 2014, but only started treatment on July 23, 2014. I had plenty of time to get my ducks in order.

Finally, it's not clear what long-term care has to do with addressing your Mom's breast cancer right now. Breast cancer is highly treatable; I was diagnosed at Stage IIIA, and I'm working full time, raising three children. Not time for the nursing home, I can assure you.

Sjacobs146 · July 2016

TigerButterfly, it would help to know the type and grade of BC that your mom was diagnosed with as well as her age. Only certain types of BC (e.g. IBC) require special expertise. I personally recommend going to doctors that specialize in BC, and if there is a hospital that has a dedicated Breast center, even better. I was diagnosed with what my PCP called "garden variety Breast cancer", and while he was willing to refer me to Dana Farber in Boston, he felt that I would do fine at Mt. Auburn which is a much smaller, regional hospital.

Everyone approaches medical decisions in a different way. I personally did not seek 2nd and 3rd opinions because I was comfortable with my docs, and the treatment protocols for my type of Cancer are well established and my docs did not recommend anything out of the ordinary. Not everyone feels the need to explore multiple options, and your siblings seem to fall into that camp. Unless your mom has a rare form of BC, you can learn just about everything you need to know on this website in a few days. I would also caution you that the more people who are in on certain decisions, the more conflicting opinions you will have. Deciding whether to have a lumpectomy or mastectomy or whether to have chemo or not are very personal decisions that depend on what is important to the person having the treatment, not to their extended family.

God bless you for being there for your mom. Good luck going forward. Stay away from Dr. Google, and stay on Breastcancer.org for the best, most accurate information

TigerButterfly · July 2016

Hi ElaineTherese and Sjacobs146,

Thank you both for your replies. I appreciate the time you took to respond to my concerns. I realize I should have provided more context and I apologize. I am working through this and should not have posted just yet, but at the same time I'm very glad to receive your advice about treatment, second opinions, and resources.

For background: re: Caregiving: Mom is in her 70s and lives independently in her own home. We kids live across the globe. With previous health issues, I left my home and job on the opposite coast and moved to her area for months or years each time. I will do anything for mom - she is my heart. But relocating is a less viable option this time. She has been talking about moving closer to or with her children in recent months. She is in stable health but we really want to spend more time together. With this diagnosis it is clear that she needs to be with family, and those discussions now need to move forward more quickly. However, there are insurance complications re: her coverage area.

Again I posted too much here re: family matters and apologize for the irrelevant bits. I'm seeking information to help form a clearer plan. Understanding treatment options and how/where she will receive care from both doctors and family in coming weeks, months and even years is key right now. (We don't yet have specific details on the diagnosis.) That's why I am asking for family participation to help research this space. Information is the only thing that has helped before - knowledge is power and it is my rock. I agree that too many conflicting opinions can create more problems, however.

Re: Mom making her own decisions, I completely agree. That's why I'm trying to help break it down for her, so she can gain a better understanding of what's going on with her health and body and make an informed decision about treatment. Medical details are challenging for her to comprehend, particularly now that she is older. Through research I can determine what kind of questions to ask her doctors, accompany her to appointments, then give her a full overview of the issues and options. Doctors don't always have time to explain things in minute detail, and it's critical that she feels comfortable with her decisions. I just want her to have as full of a picture as possible to work with. In the past we had weeks and months to do the research before a procedure. Knowing that we don't have to begin treatment immediately and that we have more than a week to research and understand options is very helpful.

Thank you again. I am sending healing wishes and prayers to you both. I'm glad you're doing well and receiving good treatment. I wish I could offer advice or assistance right now in return but at the moment I don't have any knowledge or experience with this.

LisaAlissa · July 2016

Hi TigerButterfly!

Wanting to find out what sorts of questions should be asked and what sorts of things your mother will be facing are great things to research. (Something you clearly know from earlier medical "experiences.") However BC (breast cancer) is not a single, monolithic disease.

What your mother will need to consider will vary wildly based on her particular diagnosis. If she has low grade DCIS, vs. high-grade DCIS. If she has IDC vs IBC. Or Pagets or several others. You need to give us more information so that we can direct you.

You said in your first post that your mom was "just diagnosed." Here are some questions whose answers may help us direct you toward good info:

1. I'm assuming that her diagnosis is based on the pathology results of a biopsy. (Only a biopsy can determine that she has BC.) But what kind of biopsy? And what sort of doc performed the biopsy? Was it at a local hospital? An NCIC cancer center?

2. What sorts of imaging has she had? Mammogram? US (ultrasound)? MRI?

3. How did you find out her diagnosis? An office visit? A telephone call? A copy of the pathology report of the biopsied tissue? You will want to start collecting reports and medical orders. Often you'll have to supply copies to other docs.

What, specifically, did they tell you?

4. Have they told you anything about the hormone status of the cancer? Or said anything about how large/advanced they think it is at this point. (Note that until the tumor/lesion/lump has been removed, they won't be able to do definitive staging.)

5. What do you understand are the next steps her docs are suggesting now? Several years ago, you would almost certainly be told that surgery is the next step, and if you aren't yet talking to a surgeon, you would be soon. But there are a number of different breast cancers that are now having chemo before surgery. You may well want to see a medical oncologist at a breast center to see if your mom's might be one of them.

6. You asked about timing. Inflamatory breast cancer (IBC) is a genuine, time-sensitive emergency. But many other breast cancers will allow you weeks and or months to sort out the best treatment plan and get additional tests and/or second opinions about what is best for your mom. But that is a question best addressed by your mom's docs.

7. Have you had a sit-down consultation to discuss any of those things yet? If not, that's a great place for you to be a second set of ears for your mom. And perhaps ask about getting second opinions.

Tell us more, and I have no doubt you'll get help.

HTH,

LisaAlissa

TigerButterfly · July 2016

Hi KayB and LisaAlissa,

Thank you for your responses and advice. These questions are very helpful. We are learning daily about breast cancer and have only scratched the surface. By a basic understanding I mean just knowing that there are several stages, and sub-types that will determine different approaches. Understanding that there are many treatment options, and becoming familiar with the most common forms. Walking into a doctor's office and trying to wrap your head around even the most basic information in one sitting can be a challenge, particularly with emotions and time pressure.

I'm glad to know that we may have more time to review and research options. In the past 15 years she has had 5 different and unrelated surgeries, including spinal surgery. She has also had heart failure. We had more time to understand and process some health concerns. Others were outright emergencies.

We have not yet met with a doctor. Mom had a mammogram, ultrasound, and then a biopsy. Her OBGYN told me she has breast cancer. (I am her patient representative.) They directed me to make an appointment with a breast surgeon, but did not provide any information beyond that it is "early". They said they cannot provide more detail until we speak with the surgeon.

The appointment is next week. Her healthcare system is well regarded, though not known for BC. I live on the opposite coast and am taking leave for the time being. I'm researching this beforehand to 1) Gain a basic understanding and to provide a primer for Mom. Giving her time to process and digest some basics will help when she walks into the doctor's office next week and they start discussing treatments. With mom it's important to ease into things, and being even minimally aware of some of the options available will help her mentally prepare. Note: her own mother had a double mastectomy. 2) Be ready with questions for the doctor. 3) Research docs and set up a second consult at another BC center. Hearing expert opinions from different doctors will help with acceptance. I'm finding that review of results and appointments can take weeks so I'm trying to set this up ASAP. 4) Renew the conversation and explore options for long-term care and moving closer to / in with family. 5) Do preliminary research on BC centers in cities where her children live. 6) Understanding how long I will be on leave - and possibly consider moving again.

I understand now that it isn't possible to do more specific research before the consult, and I appreciate the cautionary notes regarding research in general. I aim to at least accomplish the above basics and will go from there.

I think this may not be the place to discuss caregiving and patient representation for those who need guidance through medical challenges. I understand this is a very personal health issue and that it is best for Mom to manage her health herself, but she has never wanted to do so and relies on her children for guidance. She says she cannot understand these things and does not want to. So I am providing her with a basic understanding of her condition and treatments so that she may make informed decisions. I do not want to make these decisions for her - even though she asks me to.

I am reaching out for information this time because time is more of a factor. I'm seeking to understand a very complex health issue and be prepared to help Mom. I also need to make decisions regarding care in coming weeks/months/year. Understanding more about what to expect - even roughly - will help with making long-term arrangements.

Thanks again for all your help. I really appreciate your time.

TigerButterfly · July 2016

Hi KayB

Thank you for your follow-up. I just got off the phone with mom and touched on what we have discussed here - emphasizing that this is her body and health and it's important for her to make her own decisions. She is just not wanting to participate at all this time, not even to choose a doctor. I think it is a stage of denial but I'm concerned. I don't feel comfortable making all decisions, but my siblings are not really helping.

I am generally very stoic about medical crises - this is the 7th time I have been in the caregiver role and I just put on the nurse/administrator hat and plow through. My father passed long ago but he was a doctor and I suppose research/preparation and patient care is just in me. But I'm not prepared this time and I am seeking help.

Thanks for your notes about really needing specifics. I think the research "alarm" in my first posts came from not understanding that we have more time to review options. It helps reduce the pressure and urgency. I spoke with a patient rep at a BC center earlier this week and mentioned that I was researching the options. She said every day matters. I'm sure she was just trying to be helpful but that put me in a small panic.

I'll leave it at the basics until we receive more information, and keep other research to myself. I sent mom a link to a cancer.org broad overview of what breast cancer is, with basic info on the different stages and sub-types, and the common types of treatment. In part this is just about gently breaking her into acceptance of her condition and what she may or may not be facing ahead. She is not in acceptance mode yet and is probably thinking about her mother's mastectomy. She mentioned this a few days ago. Gram was convinced that she never had breast cancer and the doctor just wanted to perform unnecessary surgery for profit. She was very unhappy about it for the rest of her life. Also, mom's father died from liver cancer.

So she has a block about cancer and this basic understanding thing is something I hope will help her. I've let her know we don't have answers yet, but that she may not need a mastectomy, it may be a lumpectomy or even just radiation. And assuring her that she will have a second opinion. I'm not sure if this is the right approach but I'm basing this on previous experiences and understanding of her way of thinking and learning. She does not do research for herself and does not google. She asks her family and friends for their opinions. Hearing the basics from me vs. a doctor first will help with acceptance. It's a process and starting it now, she will be in a better position when it comes time to make decisions.

I'm trying to be a combination of pragmatic, stoic and optimistic. But I don't think I am managing this very well this time. I'm devastated and internally panicking. I am suppressing deep-seated and resurfacing fear of losing my mom, and honestly not doing that great about it. On top of that I don't know how care will be managed in the immediate or the long term without losing my job and possibly home again. Everything is just up in the air.

So again I truly appreciate all of your help and advice. I hope you are in good health and send my best wishes.

I may or may not continue to post after this week - I've never posted in a public forum and am embarrassed about sharing too much and burdening others. But please know that I am very grateful for the help.

Sjacobs146 · July 2016

TigerButterfly, you sHould get the pathology report from wherever your mom had her biopsy done. You have a right to see it, they cannot deny you. You should not wait until you see the surgeon. Having the information from he pathology report will help guide your research. To say that it is "early" is not enough. There is just too much info to cover without knowing the specifics about the type of BC that your mom has. Also, by suggesting that your mom make her own decisions, I did not mean to suggest that she should do it without help. You should absolutely outline the options, review pros and cons of each, find out what is important to your mom, and proceed from there. For example, there is a lot to consider if you're making a choice between lumpectomy and mastectomy because in most cases the survival rate is the same, so other factors must influence your choice. For example, lumpectomy usually means radiation therapy, sometimes with mastectomy you don't need radiation so some women choose MX partially because they want to avoid radiation treatment. There are several threads on here discussion boards that discuss how to make certain treatment decisions that you should absolutely read.

Try not to panic too much until you have more info. Many people panic when they hear the word Cancer, and assume a death sentence. The 5 year survival rate for BC is around 98%, it's extremely likely that your mom will be here for a very long time. Also, the treatment is manageable. I went through my entire course of treatment in 6 months. I missed 7 days of work over the course of those 6 months. I expected it to be a lot worse. Take some deep breaths and accept that until he treatment decisions have been made, here will be a lot that will be up in the air.

TigerButterfly · July 2016

Hi KayB and SJacobs,

Thanks again for your replies. I very much appreciate your time in the past few days. I will definitely be paying forward the help I've received from others at this critical time.

I called the surgeon's office and they would not share the pathology results. It is evidently the doctor's policy to discuss them with the patient at the first meeting, not before. Thanks for confirming she is entitled to them. I then called the OBGYN's office and after some pushing I eventually received them. I understand that delivery of results is a delicate matter, but if it can ease a patient's worry or at least help them mentally prepare beforehand it is helpful. We would have been in the dark nearly two weeks before the visit.

A bit more background on the "c" word and mom - a top lung doctor told my mom a few years ago that she "probably has lung cancer" based on a scan (before the bronchoscopy). She'd had pneumonia for 9 months and was coughing constantly. That scare did a number on her. I can't imagine why the doc would have said that. Thankfully she was ok but it seriously shook her up. I think some of that doubt is carrying over since it wasn't "real" the last time. I've been through a few scares/advanced testing due to false scans and at this point I'm admittedly a bit skeptical when it comes to these things. However, this time there are solid biopsy results and it is clear that she does have cancer. So that's why I'm trying to ease her into things with solid info.

Details:

Ductal carcinoma in situ, nuclear grade 2, estrogen receptor positive, progesterone receptor positive. A friend tells me this is "standard". I don't have any info. regarding HER2. I asked to set up the additional testing that follows a biopsy (what should she for sure get done?), but they said we have to wait until the doctor's visit. Any thoughts would be appreciated.

Big hug/thanks to all here.

PS: KayB, still embarrassed to post, but thanks for the word of encouragement.

TigerButterfly · July 2016

Thank you again, KayB! I hope you're doing well. These notes on surgery options and the DCIS post info is really great.

We are definitely glad to have results and something to work with. I'm sure the surgeon just wants people to stay away from Google before coming in for their first visit, but when a patient is told only "you have cancer" and it is "early" and not a single detail more for two long excruciating weeks that is not empowering the patient.

We now have the basic pieces to move forward with. Nothing has really changed - she still has cancer, she is still facing a journey to better health - but already she is feeling better and more grounded in reality. A glimmer of her old resolve is coming through. Knowledge is power and the road ahead is at least somewhat visible on the map.

I'm wondering if there is any way she can avoid surgery at all - if the tumor is small and other conditions fit. She is on heart medications and blood thinners so surgeries have been hard on her. I will look into alternate treatments and definitely welcome any suggestions. I'm not the expert of course so we will leave it up to the docs to suggest treatments - but just knowing there may be other options helps.

KayB and everyone - thank you again and please let me know if there's anything I can do for any of you in return.

TigerButterfly · August 2016

KayB, thank you for this great information. We will definitely bring up whether radiation might be avoided. Really wish she didn't have to undergo surgery but will keep a positive outlook. Doc appointment finally coming up at the end of this week.

With much appreciation,

TigerButterfly

Research, family participation + decisions, caregiving

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