Which advice would you give to someone who has just been diagnosed with Phyllodes tumor?

See some advice from people with experience in Phyllodes tumor to people who have just been diagnosed with Phyllodes tumor


Advice for Someone Diagnosed with Phyllodes Tumor


Receiving a diagnosis of Phyllodes tumor can be overwhelming and raise numerous questions and concerns. It is important to remember that you are not alone in this journey. Here are some key pieces of advice to help you navigate through this challenging time:




  1. Seek Expert Medical Advice: Schedule an appointment with a specialist who has experience in treating Phyllodes tumors. They will be able to provide you with accurate information about your specific case and guide you through the treatment options available.


  2. Educate Yourself: Take the time to learn about Phyllodes tumors, their characteristics, and potential treatment approaches. Understanding the condition will empower you to make informed decisions about your healthcare and actively participate in your treatment plan.


  3. Ask Questions: Don't hesitate to ask your healthcare provider any questions you may have. It is crucial to have a clear understanding of your diagnosis, treatment options, potential side effects, and long-term prognosis. Write down your questions before appointments to ensure you cover all your concerns.


  4. Build a Support Network: Reach out to your loved ones, friends, and support groups to share your diagnosis. Having a strong support network can provide emotional support, practical assistance, and a listening ear during this challenging time.


  5. Consider Seeking a Second Opinion: If you have any doubts or concerns about your diagnosis or treatment plan, it is perfectly acceptable to seek a second opinion from another qualified specialist. This can provide you with additional perspectives and help you make more confident decisions about your healthcare.


  6. Take Care of Your Emotional Well-being: A Phyllodes tumor diagnosis can be emotionally taxing. It is essential to prioritize your mental health and seek professional help if needed. Therapists, counselors, or support groups can assist you in coping with the emotional challenges that may arise during your treatment journey.


  7. Follow Your Treatment Plan: Once you and your healthcare provider have decided on a treatment plan, it is crucial to adhere to it diligently. Attend all appointments, follow medication instructions, and make necessary lifestyle changes to optimize your chances of successful treatment outcomes.


  8. Stay Informed About Clinical Trials: Clinical trials can offer access to innovative treatments and therapies that may not be widely available. Discuss with your healthcare provider if participating in a clinical trial is a viable option for you.


  9. Take Care of Your Overall Health: Maintaining a healthy lifestyle can positively impact your overall well-being and potentially improve treatment outcomes. Focus on eating a balanced diet, engaging in regular exercise (if approved by your healthcare provider), getting enough rest, and managing stress effectively.


  10. Stay Positive and Hopeful: While a Phyllodes tumor diagnosis can be challenging, it is important to maintain a positive mindset and stay hopeful. Advances in medical research and treatment options are continually being made, and many individuals have successfully overcome this condition.



Remember, every individual's journey with Phyllodes tumor is unique, and your healthcare provider will tailor your treatment plan to your specific needs. Surround yourself with a strong support system, stay informed, and take an active role in your healthcare decisions. With the right medical care, emotional support, and a positive outlook, you can navigate through this challenging time and work towards the best possible outcome.


by Diseasemaps

zo snel mogenlijk een operatie met marge

1/27/18 by Phyllodesfoundation.com

First positive attitude.Find an oncologist that will treat it aggressively. Have it removed with wide margins or if it is too large have the breast removed. Have 6 month mammograms, ultrasounds and yearly chest x-rays to make sure it doesn't metastasize into the lungs.

4/28/17 by Mary Jane Brother 1100

Make sure they have clean wide margins and keep checking for new lumps.

5/9/17 by Rhonda 1010

Take one day at a time. Read and empower yourself with knowledge about this disease ado you can intake educated decisions.

10/7/17 by Wendy Nelson 1500

Find a team that will treat it with speed with removal and clear margins given. Read up and empower yourself with knowledge . Join the face book group as it has all around the world members . Live each day doing something in that you love. Enjoy life .

10/8/17 by 1200

Best is not to panic but stay on top of it. Which means not to be paranoid but alerted. And get a good doctor who is up-to-date with this desease.

11/26/17 by Sabrina 2500

After my initial diagnosis I was “hungry” For information - support groups on social Media can be fantastic!

5/6/18 by Marie 2500

Have it removed. They can be aggressive. They can also be easily misdiagnosed. Until it is removed and biopsied you can not know 100%.

7/11/18 by LilSiss 550

Take someone with you to appointments to ensure they hear the full information given to you about what is happening and what will happen next Have a list of questions no question is silly

11/11/18 by 3050

Again it depend if benign or borderline or malign.

6/3/19 by Nathalie 1600

If it is malignant then surely go for surgery and be fast at it

8/24/19 by Raji Bedi 1500

Get it looked at, don't wait, dont allow a GP to fob you off. Usually you know more than the doctor as they don't know what a PT is.

8/10/20 by Simone Lovett 2550

Get it removed with wide margins immediately, even if the biopsy says it's benign. They cannot be fully categorized unless removed completely, and often biopsy benign when they are really malignant. Don't wait, don't waste time trying alternatives, just get it surgically removed as soon as possible.

9/25/20 by KillPhyll 1850

See a sarcoma specialist with experience of phyllodes. Make sure they remove it with wide margins. Join the Phyllodes support group on Facebook.

9/26/20 by Lucy 3570

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