Newly diagnosed and in treatment can’t sleep enough yet
There is so much to know and the only one I’m trusting is the oncologist. The tests are factual but there are too many initials and I haven’t memorized what they all mean. There’s a super supportive team at the High Risk Breast Center but I don’t yet fit in. The less professional employees aspire to be in the know but they conflict with what I hear from him. When an off putting question is asked in error or the looks on their faces alarm me I wish they had my self control.
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Hi @fancantalk2u -
Sorry for your dx, but glad you have found us. We are here to help you down this road that no one wanted to be on.
I'm not sure from your post if you have a question we can help you with? If you tell us a bit more about your dx, we can try and assist. We can help you translate all the initials on your test results if you post them for us.
Please let us know how we can help.
Take Care.
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I echo Mandy’s post. Do you have a specific question or concern that we might be able to provide support for? Yes, there is an enormous amount of info to learn about breast cancer that all the pink ribbons could never prepare us for. It will take time to learn about all the different acronyms, initials and the huge number of variations in the disease. Breast cancer is not one disease that always presents the same way. Additionally, in terms of treatment approaches, there can be and are variations even in two people who appear to have the same type of bc. Focus on learning about what you know to be fact right now about your particular case and remember, that when learning anything new, it takes time. Take care
- There is A Guide to Common Abbreviations on the main site of bco.
- Unfortunately, I cannot paste links/urls on bco 😟
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Hello again, @fancantalk2u! It's perfectly understandable to feel overwhelmed by all the information right now. To find out what all the different abbreviations and acronyms mean, consult the Discussion Forum Abbreviation Key. Thank you, @exbrnxgrl!
@fancantalk2u, you are welcome to share more about your diagnosis and treatment plan if you feel comfortable doing so. Having more information will allow the community to assist you better.
You're not alone! Looking forward to hearing more from you soon.
The Mods
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The most recent contact with the oncologist’s nurse was stress relieving as she stayed focused on her part of connecting the prescription requests with the providers. The term cranial prosthesis due to alopecia due to chemotherapy is to take a ding out of the expense of making a wig of my own very plentiful hair which is a noticeable feature that will be missed by many. Proactively cutting it as per wig makers specifics was because 8 to 11 weeks is the turnaround time for a wig these days. The other connection is with a fitness professional to custom fit me with some program that keeps an eye on my heart as I am an old athlete that has stopped exercising altogether. The MUGA scan reveled the 50% rate of (ventricular expulsion) which is the lowest baseline as I get out only to the store and church but am fully mobile and not particularly heavy with a BMI under25. Muscle and heart are great long term qualities. A conflict ensued when losing all my hair in 1-2 weeks, both of my previously lifted no implant breasts still not sagging 25 years later AND my heart functioning are on the table. All losses are tragic but longevity has always been my ace in the hole and driving down that path has to be done very carefully. Standard of care is all that I am allotted as oncologic virology is still too risky. No matter if the published papers of it’s newly discovered effectiveness in treating early stage breast cancer are out there. Using the treatment now and not waiting for a last hope and often ineffective effort when fighting the final fight (which would be so much less destructive!!) was at issue. Admittedly, I’m no risk taker and have no problem intellectually with their approach. Thinking I’m a problem maker for sharing an article from Substack is wrong. I was blindsided by cancer 9/19/2024 and am trying to show an interest in what makes the team tick, “curing” cancer. Having to get a psych evaluation to make sure I can get through treatment may also be standard but after so many years in counseling , not again. I feel I am ready for this, if that is possible. The timing of treatment is also concerning. Most of you report once cancer is found, treatment is quickly following and this is 2 and a half months from the biopsy results. 3 months from the initial mammogram. Chemo was to begin today but there isn’t a bay open until Thursday at the Infusion Center. Holiday Baking after I get finished here is the plan that opened up due to the delay. To get past the grumble and initial craving for knowledge I searched for optimism. I distinctly recall the topic of surgery being discussed with me in the oncologist office and with the surgeon. I even called the referred reconstructive surgeon’s office and asked the nurse there my questions to seek some vision, light at the end of the tunnel, with reconstruction . Will my breasts weigh the same? No, was the answer.Dense breasts won’t be replaced with similar tissue . You’re not to that part yet, I’m being reminded. If you were going through Tennessee you’d want to know if you’re going to Dollywood, wouldn’t you?
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Hi @fancantalk2u -
It sounds like you are moving down 'the path' of your dx…even if slower than you had hoped. Sorry for all the delays it sounds like you are experiencing. It does seem sometimes with b.c. it becomes 'hurry up and wait'.
Keep reading the posts on here to find others in your situation as that is often helpful to know you are not alone going through all of this.
Best of luck as you start chemo. I hope it goes well for you.
Let us know if we can help with questions.
Take care.
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The person I’ve reached out to the most is the oncology surgeons nurse. After reading her notes she assures me that my treatment is not being delayed. The IDC is stage 1 A on the right and stage 2 B on the left and the effort now is to shrink tumors before surgery. All the lymph nodes being removed would cause lymphedema and the surgeon is trying to have a different outcome. Researching if Rotter’s nodes were inoperable and how far away from the nipple can a tumor be to be a candidate for nipple sparing surgery gave me more clarity but the surgeon isn’t weighing in on this topic yet. One tumor is 4 cm away and one is 8 cm away. Getting a biopsy for one was a strategic move completed successfully, not easily.
I was told I was at a high risk for reoccurrence but do not know why. No family history and Agendia was negative for mutations.
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@fancantalk2u You look gorgeous in that photo! I bet a wig from your own hair will be lovely also. Baking is certainly a valuable alternative activity when you have to wait for a chemo chair (and finding people to receive the results - otherwise, freeze what you can). If you’re interested in vaccines, perhaps there’s a study to join once your initial treatment is done.
Personally, I welcomed the neuropsysch exam since my plan was to resume the practice of pharmacy following therapy. It was important for me to be confident in my skills. Having a 2-3 month delay while the work-up is completed may also be a good time to consider a 2nd opinion or at least getting an appointment scheduled. You can always cancel.
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