My head has been spinning! And I need advice. I am Triple positive. I was referred to a Gen. Surgeon who talked to me about my diagnosis & what to expect. He stated Chemo would prob be the 1st line of Tx. So now Ive met the Oncologist and he also wants to start chemo. I want to know if this sounds like what others have experienced. I feel like they should do surgery first then proceed with chemo. Do I have a say in my plan? Please any advice to help me navigate through this will help!!! I need some encouragement that I can advocate for myself. No judgement please. Also who has asked for a 2nd opinion .. I asked the family doctor and she just told me "well the Oncologist is the one who decides about treatment, he/she will be your most important contact"
@ABBYB Perhaps they want to do chemo first to shrink the tumor. Do you know whether you are to have a lumpectomy or a mastectomy?
I was diagnosed with triple positive IDC after my mastectomy/expander placement surgery. Then I had my chemo which included Herceptin. My lymph nodes were clear and I didn't need radiation. From reading posts on this site, just because we have the same type of breast cancer doesn't mean we will get the same treatment.
I have an appt with another Doctor tomorrow, I know what questions to ask now.
I appreciate your response
I agree with you 100% - you need to be confident in the treatment plan. Sometimes the medical teams aren't good at providing us with the complete plan for our treatment and the reasons for the steps mentioned. And sometimes we as patients need time to process our diagnosis first - take that deep breath and move toward the treatment path and understanding it.
My cancer diagnosis was very difficult to come to terms with, and I looked into anything else but the major plan put before me. In the end - the medical team were right, and presented the best path forward for my treatment. Not judging you here - just letting you know that many of us are concerned, afraid, angry and confused about treatment and need to find the way to come to terms with it and accept it.
You mention talking to another doctor today, so present your questions to them and hopefully the puzzle pieces begin to fit together better for you.
Keep well and hope you get the information you need to feel confident.
I'm going to give you a list of questions, it is a very long list. You can pick and choose which ones you want to ask of your surgeon and oncologist.
Here is a list of questions for your surgeon:
• Am I a candidate for a lumpectomy?
• Do I need a mastectomy? Is reconstruction (plastic surgery) an option for me? What are the advantages and disadvantages? Is it possible to avoid removing my nipple and areola?
• Do the lymph nodes in my underarm need to be removed?
• What is a sentinel lymph node biopsy? What are the benefits and risks? Would you recommend it for me?
• What is the risk of lymphedema with a sentinel lymph node biopsy? With axillary lymph node dissection?
• What is the benefit of having more lymph nodes removed?
• What are the side effects of these procedures? Can they be prevented or minimized?
• Should I consider chemotherapy before surgery?
• Will I need radiation therapy after surgery? Does this affect my reconstruction options?
• When do I need to make a decision about surgery?
• What should I do to get ready for the operation? Do you have recommendations on how to help me relax before surgery?
• What medications and supplements should I stop taking? Should I stop taking hormone replacement therapy? What about birth control pills?
• Will you describe exactly what you will do during this operation, and why?
• Will my tumor be saved? Where will it be stored? For how long? How can it be accessed in the future?
• What are the potential risks and side effects of this operation? What can be done to ease side effects following surgery?
• Does the hospital offer programs that help aid healing?
• What can I expect regarding the operation?
• Will I need to be admitted to a hospital for this operation? If so, how long will I stay in the hospital?
• How long will my surgery take?
• What type of anesthesia will I need for this operation?
• How long do I have to wait for my preoperative test results? Do I call you, or does your office call me?
• Will a pathologist examine the tissue and write a report? Who will explain that report to me?
• What are the possible complications for this type of surgery? How would I know if there is a problem?
• How long will it take me to recover after the surgery?
• When can I return to work and other daily activities?
• Will I have stitches, staples, and/or bandages?
• Will there be permanent effects from the surgery?
• Where will the scar be, and what will it look like?
• What type of clothes should I bring to go home in? Will I need a special type of bra?
• Are there instructions or post-operative care pamphlets I can take home with me? When can I shower or bathe?
• Will I need to have surgical drains? What does this mean? How long will the surgical drains be in?
• Do I need a nurse to visit my home after surgery? How is this arranged?
• When will I need to return for a follow-up appointment?
• Will I need help at home after the surgery?
• What kind of pain will I be in afterwards? Can you help me manage my pain?
• When should I call your office if I experience any side effects?
Questions for Oncologist
• Exactly what type of breast cancer do I have?
• How big is the cancer? Where exactly is it?
• Has the cancer spread to my lymph nodes or other organs?
• What’s the stage of the cancer? What does that mean?
• Will I need any other tests before we can decide on treatment?
• Do I need to see any other doctors or health professionals?
• What is the hormone receptor status of my cancer? What does this mean?
• What is the HER2 status of my cancer? What does this mean?
• How do these factors affect my treatment options and long-term outlook (prognosis)?
• What are my chances of survival, based on my cancer as you see it?
• Should I think about genetic testing? What are my testing options? Should I take a home-based genetic test? What would be the reasons for and against testing?
• How do I get a copy of my pathology report?
• If I’m concerned about the costs and insurance coverage for my diagnosis and treatment, who can help me?
• What are my treatment choices?
• What treatment do you recommend and why?
• Should I think about taking part in a clinical trial?
• What would the goal of the treatment be?
• How soon do I need to start treatment?
• How long will treatment last? What will it be like? Where will it be done?
• Should my biopsy tissue be sent for a gene expression test to help decide if chemotherapy might be helpful for me?
• What should I do to get ready for treatment?
• What risks or side effects are there to the treatments you suggest? Are there things I can do to reduce these side effects?
• How will treatment affect my daily activities? Can I still work fulltime?
• Will I lose my hair? If so, what can I do about it?
• What are the chances the cancer will come back (recur) after this treatment?
• What would we do if the treatment doesn’t work or if the cancer comes back?
• What if I have transportation problems getting to and from treatment?
• How will we know if the treatment is working?
• Is there anything I can do to help manage side effects?
• What symptoms or side effects should I tell you about right away?
• How can I reach you on nights, holidays, or weekends?
• Will I need to change what I eat during treatment?
• Are there any limits on what I can do?
• Can I exercise during treatment? If so, what kind of exercise should I do, and how often?
• Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed?
• Will I need special tests, such as imaging scans or blood tests? How often?
Well said @ABBYB And miracles do happen with some assistance from our medical professionals and our attitudes. 🙏
Knowledge is power and helps reduce fears and increase our confidence in our treatment and path forward.
Keep well and let us know what you discover. Have a good day.