Confused and Scared
Hi. I'm glad I found this forum. I just turned 63, and in mid-January, I went for my mammogram, and they told me I had 3mm calcifications that "were probably nothing." It wasn't nothing. A biopsy showed HER-2-positive cancer (negative for estrogen and progesterone). I had surgery a week ago. Invasive Ductal Carcinoma, Grade 3 of 3. 8mm. No lymph node involvement.
The surgeon is nice but doesn't instill much confidence. On the intitial meeting she hit me with so much information and doom and gloom I was completely overwhelmed—while at the same time saying it was the smallest thing detected on a mammogram and caught it super early etc… (but I practically had to beg for some positive input) My husband was so angry about her delivery. During this initial meeting, she mentioned a treatment regime involving herceptin for a year plus chemo. She had said before that if the cancer was less than a cm and no lymph node involvement, I would get 5 days of radiation and that option of herceptin would be unlikely. She says now that my numbers are in a grey zone and the team will be meeting to discuss treatment options. But she again mentioned the Herceptin, every 3 weeks for a year plus month of chemo that could involve hair loss.
She went on to talk about my comfort level with treatment "some women want to do everything to make sure it is out of their body."
I went from thinking I had this thing that would be taken care of ("It's so small! You're in the driver's seat!" ) to being in fear and confused whether I am being over-informed and instructed due to liability/cover themselves issues. I'm going to get a 2nd opinion. I did some reading and I see the grade 3 thing is a concern—aggressiveness. I had thought the lymph node signaled not in blood stream—but apparently there is a chance that it could have entered. I don't know what to do. I do want to do everything I can to make sure I am clear of this. But the idea of all of these chemicals in my body—for a year? Is it overkill? I am so upset about the idea of losing my hair. Why can't it be Herceptin alone? She mentioned the possibility of entering a study, but I don't know anything about that. I'm in Boston so I'm in a good place. Please help. I'm hoping there is someone similar to me that can shed some light on this. I am having such a hard time dealing. Thank you.
Comments
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Hi @ellie2026, and welcome to our community. We're so very sorry for the reasons that bring you here, but we're really glad you've found us. You're sure to find our community a wonderful source of advice, information, encouragement, and support — we're all here for you! We're sure others will be by soon to weigh in with their experiences.
We know the early days of designing a treatment plan can be overwhelming and confusing. It certainly makes sense to take time to research and investigate your options. It's good you're getting a second opinion, which should help you consider other options or confirm your doctor's recommendations.
To help you understand a little better about what you're dealing with, we invite you to check out our pages on
- HER2 Status and How It Affects Treatment
- Anti-HER2 Treatments
- Herceptin: Side Effects, How It Works and More
- Breast Cancer Grades and What They Mean
- When is Chemotherapy Used for Breast Cancer
We hope you're recovering well from your surgery. Let us know how the second opinion goes and what you decide. We're all here to help you through treatment and beyond! Any more questions, just let us know!
—The Mods
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Hi @ellie2026
Welcome to the forum. I'm sorry you have had to join us, but so glad you found us.
I'm a little confused. Are you not going to be seeing an Oncologist? I guess there may be differences in treatment paths in different areas, but your path seems a bit different than I have seen. In my experience (both times), I started with a surgeon who did the surgery and in both cases for me offered me a lot of information. They then passed me on to an Oncologist. It was their job to determine the next course of treatment. If that isn't what is happening for you, I would DEFINITELY want to be talking to a Medical Oncologist. Even though my surgeon told me what they 'thought' would be happening, it was the MO who actually gave me the options available to me. This was true for me in both my dxs even though the first time I didn't need chemo.
I really can't comment on whether the treatment information from the surgeon is likely as my situation was different. Get an appointment with an MO if they are not passing you on. Decisions are always yours. You need to be given all the information to make them. I don't see that happening for you right now.
Chemo is not fun, but one does get through it if it is needed. If that happens, you can look into cold capping to try and reduce hair loss. It is expensive (and generally not covered by insurance), but sometimes worth it.
Hang in there. You've GOT THIS!
Take Care.
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Hi Mandy. @Mandy23. Thank you for your kind response. Sorry I've been unclear. I just talked to the surgeon yesterday, and I'm a bit scattered. I am going to have a "team" review my results and discuss treatment options within their grouping, and then with me. I am also going to get a 2nd opinion (from a place suggested by my primary care).
In your experience, did you receive different or more options from the oncologist?
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Hi Ellie,
I'm sorry for what you are going through. I was recently diagnosed as well. I emphasize with your experience. I feel like my surgeon doesn't provide enough information and when I research myself I am flooded with confusing and overwhelming information. I wish there was a "breast cancer for dummies" book as I desperately need one. I am also getting a second opinion. I have realized that there is a difference in approach perspective to treatments and I felt like options presented were emphasized according to this perspective. I feel powerless and in limbo as my surgery was postponed as I now have to have another MRI with guided biopsy as my invasive squatter may have invited some malignant cousins. I have scheduled a second opinion appointment before final decisions. I wanted to let you know that you are not alone in feeling confused, scattered, and overwhelmed. I wish you the best.
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Hi @ellie2026
Oh good! Glad to hear you have a team evaluating your situation. Hopefully, they will be better at answering your questions that the surgeon seems to be.
I really can't comment on how often the surgeon's ideas are different than the oncologist's. Every situation is different. Also, in my situation, with HR+ Her2 -, I had an Oncotype test and didn't get those results until after I started seeing the onclogist. That helped me make the chemo decision. I don't know whether there are options for Her 2 + that add clarity. I would think they could at least provide you with some statistics.
You might want to do some reading about experiences of the Her 2 + people.
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Hi Ellie,
I understand your confusion and fear. It is so scary!!
There is so much information at first, it’s overwhelming. I’m 65 and was diagnosed with Triple negative breast cancer in January. It requires chemo over a 6 mos period and surgery plus more. Your type cancer has been successfully treated with Herceptin. Noone wants chemo but it works to heal these cancers.
I’m being treated at a top hospital in Chicago but also got a second opinion from Dana Farber that agreed with my treatment. Now that I’m in treatment I feel like I have some control. At the beginning I was a mess and took Xanax most days to get through the traumatic experience.
Take it one day at a time. Feel free to reach out.1
