The CT scan Report came back with “NO SUSPICIOUS PULMONARY NODULES” From 40 + to ZERO Nodules.
That is unbelievable!!!!!!!
This is like winning another lease on life.
THEY ARE GONE!!!!!!!!!!!!!!!!
I am going down to Pittsburgh on November 5th to have a check up and to have a second reading of the Scans to be sure that they read it correctly.
I also will suggest a PET scan to see if there are any hot spots they have missed with the CT scan.
I do have a scab at the original site that bleeds off and on. I would like to know why it won’t heal.
I am not out of the woods yet… but I am on the right path.
Thanks for all your help and prayers.
Jimmy B.
This is Jim Breitfeller's journey into the Maze of Melanoma. Jim Breitfeller has gathered medical information for the patient and the caregiver. As Lance Armstrong would say "Lets stand Up to Cancer" Jim's Battle with the Beast July 2005 to present.
Monday, October 29, 2007
Sunday, October 28, 2007
Melanoma Guide page # 4
Questions you may want answered during your MD visit before agreeing to any surgery or treatments are the following:
Do you (or your group) operate or manage a large number of melanoma patients?
Will you personally be managing my care or will I be followed by residents / fellows ? (Post-graduate MD’s in training)
If you do not have a large experience in melanoma patients, whom do you recommend (or what center) will you send me to?
Are there any alternative surgeries / medical treatments that could be considered besides the one you are offering or suggesting ? (i.e. – what is YOUR rationale for what you are doing)
Should I consider getting a 2nd opinion if the surgery / treatment is complex or controversial?
Possible Outcomes from 3rd Doctor Visit
Agreement on treatment and plan for YOUR therapy Go and have a really nice dinner – then “just do it!” Disagree on treatment and plan Ask about 2nd opinions Ask first from YOUR physician Other resources Other major melanoma centers www.mpip.org (post your concerns)
Finally
This is not an all inclusive method for determining YOUR stage of melanoma or the ‘right’ treatment. However, this information is can be helpful for the newly diagnosed (“now what”) patient. The hope is that by giving the overwhelmed and frightened melanoma patient an approach to finding information about their disease and treatment options, they will become an empowered and active participant in their diagnosis and treatment.
Special thanks to Gertude Stein for this Summary.
Do you (or your group) operate or manage a large number of melanoma patients?
Will you personally be managing my care or will I be followed by residents / fellows ? (Post-graduate MD’s in training)
If you do not have a large experience in melanoma patients, whom do you recommend (or what center) will you send me to?
Are there any alternative surgeries / medical treatments that could be considered besides the one you are offering or suggesting ? (i.e. – what is YOUR rationale for what you are doing)
Should I consider getting a 2nd opinion if the surgery / treatment is complex or controversial?
Possible Outcomes from 3rd Doctor Visit
Agreement on treatment and plan for YOUR therapy Go and have a really nice dinner – then “just do it!” Disagree on treatment and plan Ask about 2nd opinions Ask first from YOUR physician Other resources Other major melanoma centers www.mpip.org (post your concerns)
Finally
This is not an all inclusive method for determining YOUR stage of melanoma or the ‘right’ treatment. However, this information is can be helpful for the newly diagnosed (“now what”) patient. The hope is that by giving the overwhelmed and frightened melanoma patient an approach to finding information about their disease and treatment options, they will become an empowered and active participant in their diagnosis and treatment.
Special thanks to Gertude Stein for this Summary.
Melanoma Guide Page # 3
Important Tip #2
Before starting any surgical or treatment plans (and ESPECIALLY in more advanced disease in which treatments maybe more controversial) – you need to understand your diagnosis and all the various options for your Stage of melanoma.
In other words, before you undergo ANY treatment, you need to do YOUR HOMEWORK and understand YOUR options before deciding with your physician (usually at a 3rd visit) what the plan for YOUR melanoma treatment will be.
Important Information You want to find answers to when doing YOUR Homework” prior to your 3rd (Treatment Phase) physician visit
What seems to be ‘consensus’ for YOUR stage of melanoma ?
Excision, sentinal node biopsy, lymph node removal, etc
What seems to be ‘controversial’ for YOUR stage of melanoma ?
No therapy, adjuvant therapy, radiation, bio-chemotherapy, etc
How do the major melanoma centers approach YOUR stage of disease ?
What is their ‘rationale’ for their suggested therapy
Are the only options for YOUR stage of melanoma ‘clinical trials’ ?
This may apply primarily to advanced stage patients who have already undergone surgery / therapies and are having recurrence of melanoma
Where to go to starting getting the information YOU need
Websites for Melanoma Information
www.nccn.org – National Comprehensive Cancer Network
www.Cancernet.nci.nih.gov – National Cancer Website
www.cancer.gov/cancerinfo/wyntk/melanoma – NCI site
www.melanoma.org – Melanoma Research Foundation
www.mpip.org – Melanoma Patient Information Page
www.skincancer.org
www.melanomacenter.org
www.clinicaltrials.org
www.cancertrialshelp.org
www.emergingmed.com
This list does not represent an endorsement of any given website or a complete list of all available resources for melanoma patients
How to approach and organize the information YOU obtain
Make a list of the various treatment options for YOUR stage of melanoma
Compare / contrast how the large melanoma centers treat YOUR stage of disease
Look for consensus in their treatment options
Determine how the various treatment options could affect your life
(ie. Determine side effects of treatment, effect on family, work, lifestyle you are use to)
Make a ‘wish-list’ based on the information / decisions you have reviewed and made
YOUR ideal treatment plan (medical / surgical and length)
YOUR ideal place the treatment will take place
YOUR ideal follow up
YOUR ideal outcome
Prepare this and your list of Questions for your doctor and take to the appointment with you (follow Tip #1 as before too). As this appointment is to talk about YOUR treatment plan – warn your doctor that this will NOT be a short appointment (so they may want to make it the first or last appointment of their day!)
Melanoma Guide page # 2
Why do you need to know your melanoma Stage ?
It determines if you need a surgical approach to your melanoma
It determines if you need further testing during your surgery (sentinal node biopsy)
It determines if you will need adjuvant therapy after surgeryIt determines if surgery is not indicated and other therapies (gamma knife / bio-chemotherapy etc) is needed in the place of surgery
Important Tip #1
As it is most likely that you have been in some ‘shock’ given the discovery of melanoma, it is important to bring another person with you to take notes on what is said or suggested during this 2nd physician visit. These can then be reviewed after the visit.
Important 2nd Visit (Diagnosis Phase) Questions for your Physician
What is MY Stage of melanoma ? (and what does that mean)
Given my Stage of Melanoma, what are you recommending will my 1st treatment (or surgery ) be?
Will my surgery / medical treatment be done here or at another center?
Simplified Melanoma Staging / Treatment Plan ChartStages of Melanoma:
Stages of MelanomaTreatment Plan(s)
Stage O (in situ) ExcisionStage I(primary < 1mm) Excision (Some centers will doCXR +/- lab work)
Stage II (deeper invasion) Excision + SNB? * Adjuvant therapy
Stage III (LN involvement) * Excision? * No therapy? * Adjuvant therapy
Stage IV (Diffuse melanoma) * Depends on site(s) Involved? * Surgery vs. Biochemo,? * Radiation, gamma knife, etc
* Note that all the these therapies are somewhat controversial as to which is the “RIGHT” therapy for advanced stage melanoma patients.
It determines if you need a surgical approach to your melanoma
It determines if you need further testing during your surgery (sentinal node biopsy)
It determines if you will need adjuvant therapy after surgeryIt determines if surgery is not indicated and other therapies (gamma knife / bio-chemotherapy etc) is needed in the place of surgery
Important Tip #1
As it is most likely that you have been in some ‘shock’ given the discovery of melanoma, it is important to bring another person with you to take notes on what is said or suggested during this 2nd physician visit. These can then be reviewed after the visit.
Important 2nd Visit (Diagnosis Phase) Questions for your Physician
What is MY Stage of melanoma ? (and what does that mean)
Given my Stage of Melanoma, what are you recommending will my 1st treatment (or surgery ) be?
Will my surgery / medical treatment be done here or at another center?
Simplified Melanoma Staging / Treatment Plan ChartStages of Melanoma:
Stages of MelanomaTreatment Plan(s)
Stage O (in situ) ExcisionStage I(primary < 1mm) Excision (Some centers will doCXR +/- lab work)
Stage II (deeper invasion) Excision + SNB? * Adjuvant therapy
Stage III (LN involvement) * Excision? * No therapy? * Adjuvant therapy
Stage IV (Diffuse melanoma) * Depends on site(s) Involved? * Surgery vs. Biochemo,? * Radiation, gamma knife, etc
* Note that all the these therapies are somewhat controversial as to which is the “RIGHT” therapy for advanced stage melanoma patients.
Melanoma Guide page #1
Rules of Melanoma as a Disease
1. You have been given a diagnosis – NOT a death sentence
2. Melanoma survival statistics describe a ‘group’ of similar patients…. but they may have NOTHING to do with YOUR chance of survival
3. In advance Stage melanoma, there is NO one “RIGHT” answer (or “BEST” treatment) option for your melanoma
4. The BEST melanoma patient is an ACTIVE PARTICIPANT in his or her treatment (not a PASSIVE RECIPIENT)
"The ‘phases’ that most melanoma patients seem to go through (in this author’s opinion) are:
DISCOVERY, DIAGNOSIS and finally TREATMENT. These ‘phases’ very closely linked to physician visits when the information about melanoma diagnosis and treatment are shared with the patient. While superficial melanoma treatment is fairly straight forward, more advanced stages of melanoma (again in this author’s opinion) require more physician and patient interactions (“visits”) especially in the DIAGNOSIS and TREATMENT “phases”.
The following Question / Answer format will help you find the information you need about your diagnosis and treatment as well as provide you with links to important sites for more information on melanoma.
Important 1st Visit (Discovery Phase)
Questions to ask your Physician
Why do you think I have melanoma?
What is MY melanoma Stage ?
(Has it been determined?)
Do I need more tests to determine MY Stage ?
If I need more tests – what tests are they ?
Possible Tests that you may undergo:
CT Scan - looks for melanoma in abdomen (bowel + liver) and chest (lungs and lymph nodes)
PET Scan – looks for ‘metabolically active’ areas in the body which may be melanoma
MRI Scan – Used (primarily) to determine if the brain has any melanoma involvement
Bone Scan – uses radioactive material to find if any bone involvement with your melanoma
Blood Work – non-specific indicator that melanoma maybe involved in several organ systems
Sentinal Node Biopsy – looks for involvement of lymph nodes that melanoma may spread to from its primary siteUltrasound – use of sound waves to try to make a diagnosis of melanoma (usually in solid organs)
Simplified Staging Guide to Melanoma*
Stage 0
In situ melanoma
Stage I
No ulceration (<>Stage II > 4 mm depth (with or without ulceration)
Stage III- >Lymph node involvement
Stage IV- >Distant mets to skin, subcutaneous or lymph nodes; or mets to any visceral Organs (lung / liver / brain / bone / etc)
* American Joint Committee on Cancer Staging System for Cutaneous Melanoma J Clin Oncol 2001; 19:3548-3636. Lippincott Williams & Wilkins.
1. You have been given a diagnosis – NOT a death sentence
2. Melanoma survival statistics describe a ‘group’ of similar patients…. but they may have NOTHING to do with YOUR chance of survival
3. In advance Stage melanoma, there is NO one “RIGHT” answer (or “BEST” treatment) option for your melanoma
4. The BEST melanoma patient is an ACTIVE PARTICIPANT in his or her treatment (not a PASSIVE RECIPIENT)
"The ‘phases’ that most melanoma patients seem to go through (in this author’s opinion) are:
DISCOVERY, DIAGNOSIS and finally TREATMENT. These ‘phases’ very closely linked to physician visits when the information about melanoma diagnosis and treatment are shared with the patient. While superficial melanoma treatment is fairly straight forward, more advanced stages of melanoma (again in this author’s opinion) require more physician and patient interactions (“visits”) especially in the DIAGNOSIS and TREATMENT “phases”.
The following Question / Answer format will help you find the information you need about your diagnosis and treatment as well as provide you with links to important sites for more information on melanoma.
Important 1st Visit (Discovery Phase)
Questions to ask your Physician
Why do you think I have melanoma?
What is MY melanoma Stage ?
(Has it been determined?)
Do I need more tests to determine MY Stage ?
If I need more tests – what tests are they ?
Possible Tests that you may undergo:
CT Scan - looks for melanoma in abdomen (bowel + liver) and chest (lungs and lymph nodes)
PET Scan – looks for ‘metabolically active’ areas in the body which may be melanoma
MRI Scan – Used (primarily) to determine if the brain has any melanoma involvement
Bone Scan – uses radioactive material to find if any bone involvement with your melanoma
Blood Work – non-specific indicator that melanoma maybe involved in several organ systems
Sentinal Node Biopsy – looks for involvement of lymph nodes that melanoma may spread to from its primary siteUltrasound – use of sound waves to try to make a diagnosis of melanoma (usually in solid organs)
Simplified Staging Guide to Melanoma*
Stage 0
In situ melanoma
Stage I
No ulceration (<>Stage II > 4 mm depth (with or without ulceration)
Stage III- >Lymph node involvement
Stage IV- >Distant mets to skin, subcutaneous or lymph nodes; or mets to any visceral Organs (lung / liver / brain / bone / etc)
* American Joint Committee on Cancer Staging System for Cutaneous Melanoma J Clin Oncol 2001; 19:3548-3636. Lippincott Williams & Wilkins.
Friday, October 26, 2007
10/26/2007 My Reflections
What have I learned?
1. I needed a support group! I told all our friends and family about my situation. I wasn't looking for pity. I was looking for any assistance they might be able to give me, prayers, Internet, medical advice, tell me and my wife that we would be ok. Help if we ever needed any. You are our angels. And we have lots of them. Melanoma is not something you should hide under a basket. Tell the people that are important to you.
2. The Internet is FULL of treatment possibilities. It's important that you understand the medical jargon. Then you can begin to understand the treatments that are out there. There are a number of melanoma and NCI sites you should be following frequently. I'll be happy to share what I followed and picked up on.
3. It's important that you have an oncologist who sees you as a partner in finding and following a course of treatment. This is your life at stake. How you feel and what course of action you think is best for you is most important. If you do not have this kind of oncologist, have a heart-to-heart with him/her, be blunt and make your feelings known. If they cannot work this way - CHANGE ONCOLOGISTS! I did.
4. Select the program of treatment you feel is best for you and sail forth into it. Do not look back! You gotta believe in your plan.
5. At the same time, be on the lookout for a "Plan B." What will you do just in case Plan A doesn't work?
6. I can't say enough about being at peace within yourself. Our bodies are all one huge complicated organism. And all the parts communicate with one another. If one part is under duress, it affects the rest. I really believe my cancer was caused by me getting stressed out about work for a years, lowering the efficiency of my immune system. Whatever reduces your stress level - running, yoga, tai chi, reading, praying, listening to music - do it often. I'm not a doctor, but my experience tells me being at peace is critical to healing.
7. Last... Whatever you believe will happen to you... Probably will. If you believe you will die - you probably will. If you believe - I mean really believe - you will live. You have a good chance of living. This is not pie-in-the-sky believing. It's the hard-nosed belief that you have taken every step you can take and are ready to take others if necessary.
Melanoma is not for the faint of heart. You gotta want to live and do whatever is necessary to live to have a chance. And even that may not be enough...
What good have I gotten from melanoma?
What a crazy question! Good - from melanoma?
Every day is a fantastic gift. A day I didn't think I would get. I can get goose-bumps at a sunrise! Seeing my family grow - seeing my nephews, nieces, friends and family... I remember the days I never thought I'd see, these things. It colors, everything about the world. I'm a huggy sorta guy by nature. But getting and giving hugs is a gift of immeasurable worth to me now. Time is so precious to me.
No one ever promised me tomorrow... I guess I always knew that - but it didn't mean anything like it means now, with melanoma. All we have is today. If I really believe I have only today, how would I live it?
Jimmy B.
1. I needed a support group! I told all our friends and family about my situation. I wasn't looking for pity. I was looking for any assistance they might be able to give me, prayers, Internet, medical advice, tell me and my wife that we would be ok. Help if we ever needed any. You are our angels. And we have lots of them. Melanoma is not something you should hide under a basket. Tell the people that are important to you.
2. The Internet is FULL of treatment possibilities. It's important that you understand the medical jargon. Then you can begin to understand the treatments that are out there. There are a number of melanoma and NCI sites you should be following frequently. I'll be happy to share what I followed and picked up on.
3. It's important that you have an oncologist who sees you as a partner in finding and following a course of treatment. This is your life at stake. How you feel and what course of action you think is best for you is most important. If you do not have this kind of oncologist, have a heart-to-heart with him/her, be blunt and make your feelings known. If they cannot work this way - CHANGE ONCOLOGISTS! I did.
4. Select the program of treatment you feel is best for you and sail forth into it. Do not look back! You gotta believe in your plan.
5. At the same time, be on the lookout for a "Plan B." What will you do just in case Plan A doesn't work?
6. I can't say enough about being at peace within yourself. Our bodies are all one huge complicated organism. And all the parts communicate with one another. If one part is under duress, it affects the rest. I really believe my cancer was caused by me getting stressed out about work for a years, lowering the efficiency of my immune system. Whatever reduces your stress level - running, yoga, tai chi, reading, praying, listening to music - do it often. I'm not a doctor, but my experience tells me being at peace is critical to healing.
7. Last... Whatever you believe will happen to you... Probably will. If you believe you will die - you probably will. If you believe - I mean really believe - you will live. You have a good chance of living. This is not pie-in-the-sky believing. It's the hard-nosed belief that you have taken every step you can take and are ready to take others if necessary.
Melanoma is not for the faint of heart. You gotta want to live and do whatever is necessary to live to have a chance. And even that may not be enough...
What good have I gotten from melanoma?
What a crazy question! Good - from melanoma?
Every day is a fantastic gift. A day I didn't think I would get. I can get goose-bumps at a sunrise! Seeing my family grow - seeing my nephews, nieces, friends and family... I remember the days I never thought I'd see, these things. It colors, everything about the world. I'm a huggy sorta guy by nature. But getting and giving hugs is a gift of immeasurable worth to me now. Time is so precious to me.
No one ever promised me tomorrow... I guess I always knew that - but it didn't mean anything like it means now, with melanoma. All we have is today. If I really believe I have only today, how would I live it?
Jimmy B.
Monday, October 22, 2007
10/22/2007 MRI/CT scan coming up.
Wednesday I am slated for another scan. I'm hoping for the best. I been very fatigued this past month.It feels like I am trying to fight off a cold which I don’t have one. I am wondering if my immune system is working overtime trying to keep the cancer at bay. Time will tell. I should get the results early next week and I will surely share them with you. Please keep me in your prayers.I need all the help I can get. Thanks
Jimmy B.
Jimmy B.
Sunday, October 14, 2007
10/14/2007 The passing of a true friend.
I just got word that Bill Maher had passed away from Melanoma this passed week. We did not know each other well as we crossed paths while waiting to get CAT scans. We compared notes of our trials and tribulations while waiting to be seen. He left behind his wonderful wife, Amy and two daughters, Emily and Megan.
I ask you to prayer for Bill and his family, that their hurt turns into comfort knowing that Bill out of pain and in the Almighty Hands looking down on them. Bill was truly a family man and will be missed by all, but his memory will live forever.
Jimmy.B
I ask you to prayer for Bill and his family, that their hurt turns into comfort knowing that Bill out of pain and in the Almighty Hands looking down on them. Bill was truly a family man and will be missed by all, but his memory will live forever.
Jimmy.B