I just had THE call
Comments
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Unless you’re in the oncology field, I am unclear about how you can decide on what treatment you should do. Again, the complexity and potential variations in bc are very real. Additionally, as harley suggests, oncologists follow best practices and standards of care based on scientific research and data.
Just as it’s not possible to diagnose bc without a biopsy, you may find it difficult to find an oncologists who agrees to a treatment plan outside NCCN guidelines. I think most would be aghast at not doing Herceptin for HER2+ , a drug which completely changed the disease trajectory for these patients.
Again, you are free to do whatever tx you wish but please, please educate yourself about your bc and maybe consider the recommendations of an oncologist who has the knowledge and the expertise to guide you.1 -
OK, thanks guys I appreciate all your inputs. I am just beginning my journey through this and all of you had actually gone through treatments. So thanks. I guess I just want this cancer out of my body right away. But I do appreciate all your inputs which are legitimately from all your experiences.
Thanks. Please do keep me in check like what you just did.
I am legitimately panicking, I guess, I actually was tossing and turning last night. Worrying what treatment plan I will decide to do.
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May I suggest that you let your mo propose a tx plan first? That is his/her job. After it is presented to you, then you can ask questions and make decisions. Let them use their knowledge and expertise because they are trained to do that. You don’t have to worry about doing their job!
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Well I guess I will follow my onco, my breast surgeon and my sister who is a doctor's advice. They all are unanimous that I have to do chemo.
I told my sister I need her advice since she's a doctor and is currently battling fallopian cancer herself. She said - Follow your dr.'s advice. So ya, I have no choice then.
I am just really scared of the side effects. But oh well. My sister also said she tested negative for BRCA - is that good or bad?
She also said my case being er+ and her2+ is better. whatever that means.
My breast surgeon also explained why chemo had to be done. So I was satisfied with her explanation.
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pneuma,
You do have a choice. As adults we are all free to accept or decline proposed treatments. That is your absolute right. However, given your diagnosis, choosing conventional treatment seems like a very wise choice. There are different chemo regimens and while I don’t know which one was recommended for you, management of side effects has come a very long way and most people report that it’s more doable than they imagined. You mentioned not wanting to poison your body with chemo, but your alternative is simply letting the cancer run its course (alternative therapies? No good track record there).
BRCA genes are genetic mutations that pre-dispose a person to breast cancer. You have already been diagnosed, so it’s a moot point but you might consider testing if you have children (so they can consider preventative action if they test positive). Even though your sister was negative doesn’t mean you will be. Take care0 -
Oh no. So I literally wasted my $100 then? I just got a text they will bill me for it. I wonder if I can cancel. I will just cancel it, I will call the number now.
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pneuma,
No, it’s not a waste as many genes will be tested for besides BRCA. Additionally, it is a blood test and if the blood has already been drawn and the test in process, it’s doubtful that you’ll be getting your money back. Genetic testing currently involves far more than BRCA genes.
I understand that you are new to bc and the learning curve can be steep. I myself was largely unaware of how complex bc and all the possible variations and treatments are. You have lept to a few conclusions, such as bc seeding or genetic testing being a waste of money, which are generally not true. Have a look at some of the large number of informative articles and research available from large cancer centers such as Johns Hopkins, MD Anderson, Weil-Cornell Medical Center etc. Conventional medicine is not perfect and is always evolving but it beats the pants off of the unsubstantiated alternatives though in the end we all make our own choices. It helps to have a foundational understanding of your bc so that you don’t leap to unsupported conclusions.If you are considering genetic testing you might want to request genetic counseling as this can help you understand the implications and results of genetic testing. There is a lot to learn when one is first dx’ed and it sometimes has to be digested in small pieces but it’s worth doing to get a thorough understanding of your particular bc and stop you from false understandings or leaping to incorrect conclusions. This is not a criticism, we were all once newbies, but rather a suggestion that you learn from reputable resources . Take care
PS: Please ask if your medical facility has a nurse navigator or social worker who can answer or address your concerns and questions rather than attempting to cancel genetic testing which involves many more genes than you were aware of. Learn, learn, learn, and don’t act out of naïveté or misinformation!
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It sounds like you are really scared, and I totally understand that. Please do not, however, make treatment decisions based on your fears or preconceptions or what you've read on the internet. Being told you need chemo is terrifying, and I think just about everyone's first reaction is "I can't do this". Guess what? You can. These treatments have years and years of studies and patient results that prove they work.
The day before my surgery I thought my husband was going to have to drag me into the hospital; I truly did not know how I was going to go through with it. The day of I just walked right in and it was not terrible. You will be surprised at how you well you manage.
I did genetic testing even though I had no family history of breast cancer. I was negative for all breast cancer related genes, but had an unknown mutation on a colon cancer gene. My dad died of colon cancer but for various reasons I had never had a colonoscopy. After this result, I went and had one, and I am fine. I feel so relieved that I am now monitoring my health more closely because of my genetic testing.
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I hear you are scared. Anybody would be.
You have the right to make informed decisions about your treatment. That means that your doctor(s) should be explaining them to you in a way that is meaningful and accessible to you. Some doctors are great doctors but not great communicators, so if part of that is missing, feel free to ask to speak with someone else in the office who may have more time to sit and speak with you. Many practices have social workers or nurse coordinators who help with this kind of thing all the time.
Breast cancer really does have some of the most and best research out there out of all the cancers. Also, despite what you may 'hear' there have been some great strides over the last decade or so. Not as much as we patients would wish, and even more so for stage 4 patients, of course. But since the time of my mother's diagnosis and my own, a lot has changed.
The genetic testing may help you make future decisions, and it may be useful as science identifies and describes more genetic mutations and patterns. The MRI can help identify other areas in the breast that might need investigation or biopsy, so that that everything can be dealt with as effectively as possible the first time, and for informing the type of surgery recommended. The biopsy gives necessary information for making decisions about the order of chemo and surgery and setting an initial treatment.
If ever you do not feel confident about a medical recommendation, the best thing to do is ask your doctor or their staff to spend more time with you explaining it, and consider seeking a second opinion from a good cancer center. These boards can be good source of support and some explaining but can't replace medical advice. Other websites can actually spread a lot of misinformation and cause harm.
Side effects are variable from person to person and hard to predict. Try not to borrow trouble, but also it's helpful to have a medical team that you trust that you can communicate with about side effects and get support for addressing or mitigating them.
Hang in there! I have quote on my fridge, "If you're going through hell, keep going", that I think about a lot. It's ok to be scared and uncertain, just keep showing up and doing what you need to do!
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