I wanted to post a message to this forum to ask for advice for my mum who has recently been diagnosed with metastatic breast cancer. Her biopsy is still being tested to determine the exact subtype.
Doctors could not see anything un the breast and took a biopsy was taken from one of the areas with multiple lesions in her spine. We have our first appointment with an oncologist next week who will determine the treatment plan. Are there any questions I should be asking at this stage to be more prepared?
I wanted to ask for your experience with this process, with the treatments, with the side effects and subsequent recovery.
Lastly, what can I do to best support my mum? Asking as a concerned carer.
Thank you!
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Blossom751
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Dear Blossom-------You ask what you can do to support your mum. You are doing it.
Firstly, you are obviously sharing her situation by being proactive for her, connecting with this wonderful forum, being by her side and preparing for the meeting with her oncologist. How old is she? (I am eighty-seven) Is there some way she can share her thoughts on this forum, by writing on here directly or by dictating to you what to type? She will learn so much just by reading other's thoughts and messages of love and support. Is she able to do that? If so, some of her questions will be answered just by reading of other's experiences who are in the same boat as she is.
The doctor willl tell her that this is incurable. They need to find another word that is not so soul destroying. When hearing this, many of us think that this is the end. It is not. It is the beginning of a whole new chapter of her life and the more proactive she is in taking some control back, the better she will cope.
Please consider this forum as your soft landing place. Continue doing exactly what you are doing and keep us all posted. You will find us here for you, always!
Thank you Jersey-jazz for your encouragement and support!
I will introduce her to this forum, it is very informative and there are so many lovely people who are willing to share their experience. We are in the beginning of a long road which has started with a big shock but I understand this is not the end, just a bump we'll overcome.
First of all, just being there for your mum is very important. I'm sure she appreciates it.
I was diagnosed 6mo ago with a metastasis in my upper right arm. It had been 12 years since my original breast cancer. My bone was so weak that I had surgery before Christmas to put a plate and screw in it to hold it together. Your oncologist will explain the plan, tell you about the various meds, etc. Go to any cancer sites and ask for questions for doctors. This is considered a chronic disease. Your mom will be taking medication and scans from now on just as the rest of us are. You are welcome to ask anything else you want and learn by reading our stories and questions-it takes a while. God bless.
Dear Blossom, I’m sorry to hear of your Mom’s diagnosis and glad you are supporting her. The first really important thing is for her to have an oncologist she trusts, preferably one specializing in breast cancer at a leading cancer center or hospital in your area. That way they’ll be connected to other experts if issues come up, and will be learning about new medication options for this disease which are coming out every year in this rapidly-evolving field.
As others have mentioned you can think of this as a long-term chronic disease. Doctors often say it “can’t be cured, but can be treated.” The general approach is to use medications (initially pills or later on, IV chemo) to slow it down to maximize your mom’s lifespan and quality of life.
One learning curve you’ll go on is getting to know all the medication options, of which there are many (with more coming out each year). The biopsy results will help guide your choices as for example the medications for ER/PR+ breast cancer are different than those for Triple Negative. It’s a good idea to also ask for a genetic test to be performed (here in the US mine was done using just a blood test, called Guardiant 360), as that will identify whether your moms cancer has any gene mutations that make her eligible for certain medications that target them. It will also identify medications that would *not* work on her particular cancer.
These days a lot of newly-diagnosed MBC patients are starting out taking a new class of drugs called CDK-4/6 inhibitors. Ibrance seems to be the most popular starting drug. But if your mom has bone Mets only, that might suggest another approach.
Même si la nouvelle est terrible, il faut savoir qu'on peut vivre de nombreuses années avec des métastases osseuses, pour ma part on les a découvertes l'année dernière, actuellement je suis traitée par exemestane et afinitor et j'ai vu sur les forum que de nombreuses patientes vivent 5 ans, 10 ans même 27 ans avec ce genre de problème, donc pas d'inquiétudes excessives !
Hi Blossom. I was first diagnosed in 2004. Stage 2. Forward to 2013, stage 4 with a tumor in my spine. Doctor operated and removed the tumor due to the fact I couldn’t feel my legs. Very scary. 2020 it came back in my hip. 2023 I lost sensation in my legs again. More tumors in my spine. Doctor operated again. I now have rods and pins holding my spine together. It looks like train tracks. Bottom line here, I’ve been through many lines of treatment and I’m still here. I’m also pain free!! I hope my story helps. There is always hope.
Hi blossom, I am a nurse of 42 years so all the medical jargon I know . If your mom is not in medical field be with her for every appointment!! Make sure the Doctor tells you things that she can understand. Sometimes the most intelligent people are intimidated by physicians.Make sure she repeats the plan as she knows it!!Use your nurses that'd what we are here for.I am thankful for my medical back ground so I can advocate for myself..I had to retire because of my stage 4 bc and miss it very much! How old is your mom? I will pray for all of us every dayy.!
Hi Rox, thank you for your reply. Mum is 57 (will be 58 next month). You are indeed right, in a situation when difficult news are shared, even the most intelligent and outspoken people can feel intimidated. Not only doctor jargon but the NHS process is all new to us which has caused some stressful hiccups pre diagnosis.
How long ago did you get diagnosed and how are you feeling now? I'll keep you in my prayers also!
Hi blossom, At age37 I had bc and had to go on a experimental high dose chemo study radiation mastectomy..I did not have any gene.
20 years later tongue cancer( never put a cigarette in my mouth.They took half my tongue and had to learn how to eat and talk. The cancer was not from my breast cancer.
1 year later breast cancer in the other breast totally different kind and had mastectomy.
1 year later I had fluid in my lungs and tested positive from my very first breast cancer. So stage 4 now..It has been 4 years just started a new chemo pill because my cancer markers elevated...started 4 days ago...
I met a woman on a cruise in april who just got utuerine cancer and she was crying...come to find out we lived an hour away.We talked every day and o helped her with all her questions and tips on side effects...she just got done with horrible iv chemo and radiation....God put me there for her.. I am 63 years old ....I am on face book under Roxanne churas Dwyer....find me and PM me so I can give you my number...I would be happy to talk to you and your mom any time
I am sorry to hear this. I am six months in and have some suggestions. I watched the videos on the Chris Beats Cancer website and changed my diet and increased walks. He also has a free pdf booklet of things to ask your oncologist.
I brought a support person and asked if I could record the appt (so helpful when you are anxious). You also want a print out of all your scans and biopsies. I did a ton of research after and it’s important to know if it is hormone driven. Also is it palliative or curative, what stage, grade is it? Also it is ok when presented some options for treatment to take a few days and research and decide what is best for you. There are Facebook support groups for every type of cancer and also for the medications. Very helpful. Really hope it all goes well.
Blossom751 - Sorry you are hit with this. As we have all experienced this changes your life in ways you might never expect. Nothing is the same. Driving to work, going to the grocery etc it all seems different. Do your best to live in the moment and enjoy your time with your Mum. I would advise to accommodate her to as many appointments as possible. If you can't make it try to get a friend or a relative to accompany her. Take notes of each visit. Save all paperwork, blood work, test result ect (my husband has a big binder with all my stuff). Always know where the biopsy tissue is and how to access it. This is very important if you end up switching Drs as many of us do. Don't assume by the title the Dr is abreast with the most up to date treatment and testing. Do not be afraid to question your Dr in a polite way as many Drs tend to treat off, what I call, a flow chart. Get your Mum's vitamin D tested. 92% of newly diagnosed breast cancer patients are deficient in vitamin D with 80% being extremely deficient. Some research indicates the medications your Mum might end up taking are more successful with adequate vitamin D levels (not just the minimum levels). Please remember the only consistent thing about cancer is that it is inconsistent. When I was originally diagnosed my Onc made everything sound like it was not that big of a deal. You take this medication and it will do that etc. I walked out the office feeling better about things only to find out that each plan or step or medication rarely goes as anticipated. Good luck and God Bless!
I had a very hard time with this diagnoses at first. I talked to others who have the same disease and it really helped. So did family support and your Mum is lucky to have you to help her on this journey. My oncologist (though they can sometimes be brutal, goes with the territory, mine isn't) told me to treat this as a chronic disease and that helped too. A family friend who had cancer told me to listen to my doctor and do what they say. It all helped! My best wishes for your Mum.
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