Just diagnosed with melanoma...have questions

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Just diagnosed with melanoma...have questions

by j3w3ly on Wed Jul 08, 2009 12:00 AM

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I was just diagnosed with melanoma, and I have some questions.  First, the doctor did a biopsy on the mole he removed, and from that said he can tell that it has not spread beyond my skin.  How can he be sure of this?  I thought there were other tests that had to be done to be sure the cancer had not spread.  I'm basically worried the doctor isn't doing enough to be sure that all the cancer can simply be cut out of my skin.  What if I have it elsewhere?  How long does it take to spread further?  I just have a million questions and feel like I'm not getting the answers I need from my doctor.  Any help or advice from someone with experience with this disease would be greatly appreciated.

RE: Just diagnosed with melanoma...have questions

by Oysterman on Thu Jul 09, 2009 12:00 AM

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On 7/8/2009 j3w3ly wrote:

I was just diagnosed with melanoma, and I have some questions.  First, the doctor did a biopsy on the mole he removed, and from that said he can tell that it has not spread beyond my skin.  How can he be sure of this?  I thought there were other tests that had to be done to be sure the cancer had not spread.  I'm basically worried the doctor isn't doing enough to be sure that all the cancer can simply be cut out of my skin.  What if I have it elsewhere?  How long does it take to spread further?  I just have a million questions and feel like I'm not getting the answers I need from my doctor.  Any help or advice from someone with experience with this disease would be greatly appreciated.

 

Fear not my friend. What your doctor has done is par for the course. At least it is the same as for me on past experience with two skin melanoma on my back and two highly suspect moles on my neck and adjacent to my left eye. I have also had three skin carcinoma removed from my back. All this over a period of about seven years

As I understand it the biopsy will positively identify the specimen and confirm it as a melanoma - or not - as the case may be.

In the first place, you doctor or dermatologist, if he has reasonable grounds to think it is a melanoma, will then remove sufficient tissue from around and beneath the suspect mole to ensure that all infected tissue is removed. In that case there is no further concern other than for regular, periodic skin checks.

With a carcinoma the procedure is basically the same but the surgery is not so radical in that a much lesser amount of tissue is removed. If, however, on biopsy, it is shown to be more than just a carcinoma, an additional procedure is carried out and more tissue is taken from the offending area.

This procedure is not so very pleasant as it means cutting into a fresh flesh wound. I now tell my doctor's not to quibble over suspected melanoma's but to cut them out completely, as if they were. With my undoubted prevalence for developing skin blemishes that is surely a reasonable move.

Other than for bi-annual skin checks as a precaution, I don't give skin cancer a second thought. As I understand it, if skin cancer is spotted early in its development stage and removed expeditiously there should be no further problem with it. So regular skin checks are a must.

To your good health

http://prostateruminate.com

 

 

 

RE: Just diagnosed with melanoma...have questions

by ShirleyInOz on Thu Jul 09, 2009 12:00 AM

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On 7/8/2009 j3w3ly wrote:

I was just diagnosed with melanoma, and I have some questions.  First, the doctor did a biopsy on the mole he removed, and from that said he can tell that it has not spread beyond my skin.  How can he be sure of this?  I thought there were other tests that had to be done to be sure the cancer had not spread.  I'm basically worried the doctor isn't doing enough to be sure that all the cancer can simply be cut out of my skin.  What if I have it elsewhere?  How long does it take to spread further?  I just have a million questions and feel like I'm not getting the answers I need from my doctor.  Any help or advice from someone with experience with this disease would be greatly appreciated.

When you say your doctor do you mean a GP or a dermatologist or skin specialist? I would be wary of GP's knowing everything about melanoma. Who told you it was melanoma? What level did they tell you it is? My husband had a Stage IV cut out of his back six years ago and was told 'no worries'. 20 months ago his sentinal lymph node had a tumour 3cm x 1.8cm. And on the 21st of June he died. Stages 1 and 2 can be cured. Stage 3 it depends on a number of things. Stage IV and you have only a small percentage of survival beyond 5 years, and it is generally less. My husband had surgeries, radiation, you name it. He was a fit man without another thing wrong with him, worked physically and looked a good ten years younger than he was. And he's dead. Everyone reading this, please: Don't let a non qualified skin specialist mess with your LIFE. And it is YOUR LIFE we are talking about here. Bless you, and good luck. Be proactive and be educated.

RE: Just diagnosed with melanoma...have questions

by WOLFLADY1020 on Thu Jul 09, 2009 12:00 AM

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My husband had the same thing except the biopsy from the mole was "atypical cells" which I found out means not normal but not cancer either. He had mole removed then had to go to surgeon to have deeper, wider excision of what (luckeley) was healthy tissue. Told him same, to watch for any other dark moles, and have regular check ups. so was all good

Sandy

RE: Just diagnosed with melanoma...have questions

by j3w3ly on Thu Jul 09, 2009 12:00 AM

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It was a mole removed by a dermatologist.  He sent it to a lab to be biopsied, which showed the melanoma.  I have no idea what stage, they did not give me that information.  They said they can "just tell" from the biopsy that it has not spread.  I was under the impression that more testing was required to be sure that it had not spread.  I am thinking of finding an oncologist to do more tests to make sure it hasn't spread.

RE: Just diagnosed with melanoma...have questions

by tlrod on Thu Jul 09, 2009 12:00 AM

Quote | Reply

 

On 7/8/2009 j3w3ly wrote:

I was just diagnosed with melanoma, and I have some questions.  First, the doctor did a biopsy on the mole he removed, and from that said he can tell that it has not spread beyond my skin.  How can he be sure of this?  I thought there were other tests that had to be done to be sure the cancer had not spread.  I'm basically worried the doctor isn't doing enough to be sure that all the cancer can simply be cut out of my skin.  What if I have it elsewhere?  How long does it take to spread further?  I just have a million questions and feel like I'm not getting the answers I need from my doctor.  Any help or advice from someone with experience with this disease would be greatly appreciated.


If you don't have a good "gut feeling", get a second opinion. 
Melanoma is not to be taken lightly.  I have stage 3 w/ no primary (no
mole/freckle/external spot) and mine was found in my lymph nodes.  You
don't want yours to "get to the inside"....it can be deadly! 

Talk
to an oncologist, specialist, etc, but go beyond your doctor if you
want more answers.  As my oncologist once told me when I asked him if I
asked too many questions or asked for too many scans, he said, "doesn't
matter, it's your life....squeaky wheel gets the oil".  So my advice to
you is, start "squeaking"! :)

Best wishes, 

Teri

www.carepages.com; log in Teri2007

 

RE: Just diagnosed with melanoma...have questions

by cycleski on Thu Jul 09, 2009 12:00 AM

Quote | Reply

 

On 7/8/2009 j3w3ly wrote:

I was just diagnosed with melanoma, and I have some questions.  First, the doctor did a biopsy on the mole he removed, and from that said he can tell that it has not spread beyond my skin.  How can he be sure of this?  I thought there were other tests that had to be done to be sure the cancer had not spread.  I'm basically worried the doctor isn't doing enough to be sure that all the cancer can simply be cut out of my skin.  What if I have it elsewhere?  How long does it take to spread further?  I just have a million questions and feel like I'm not getting the answers I need from my doctor.  Any help or advice from someone with experience with this disease would be greatly appreciated.


HI, and good for your questions!!!  I am a 20 year melanoma survivor and I encourage people to ask all the questions you have and be persistent.  If your doc isn't giving you the answers/treatment you want, go elsewhere.  Definitely find out the stage it is as that will tell you a lot.  My biopsied melanoma was on my outer lower left leg.  I then went to a skin cancer dermatologist specialist and he cut an additional 4 inch long, deep cut to be sure it had all been cut out.  My understanding is they look for "clean" borders, meaning there is no sign of the melanoma.  Also, for the first year or two after, I saw him every three months for a full body check, then went to every 4 months for a year and then every 6 months for several years.  During all of this, I have had many biopsies, non have been melanoma, but several have been suspicious dysplastic nevi, which then ups the likelihood of melanoma in the future.  

 when it comes to your health, BE A PEST and trust your gut about your doc and treatment.  As others have said, it IS your life.  There are lots of good websites about melanoma..  Also, I would suggest a cancer survivor support group for at least a while...  It helps to be around others who have had similar experiences...   

Good luck with all of this!!

 

RE: Just diagnosed with melanoma...have questions

by Kimbalas on Thu Jul 09, 2009 12:00 AM

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Sorry to hear of your diagnosis.  I urge you to insist on more, if your doctor won't do it, then find another doctor.  It is your life they are gambling with.  Melanoma is very aggressive and like all cancers it has a mind of its own.  I went thru the exact same thing.  2005 I had a mole removed off my thigh.  Had always been there, just decided to change shape and color.  Came back as Melanoma.  Nothing more than surgery.  Was told, no worries, it would never return.  Two and a half years later after nothing more than frequent body checks and lots of spots nitro'd off, I have a swollen lymph node in the groin on the same side as the original Melanoma.  I knew something was wrong before the lump showed up.  Had been to the doc 3 weeks earlier.  Listening to my concerns, she did a blood work up that would show levels in the liver.  Of course it came back clean and I was sent on my merry way.  After this lump showed up, the doc had me in there ASAP and got me in to have it removed within the hour.  Came back as Metastatic Melanoma.  Meaning it had traveled from the primary site and to my lymph nodes.  I am a stage three.  I have been on Interferon for a year, just finished it end of May.  Horrible stuff.  I have had the pat year pulled out from under me being so sick from the meds.  I've had surgery to remove 33 lymph nodes in the groin.  I now have lymphedema.  I can't get the fluid to drain from my leg, so it is a constant battle with a huge swollen leg.  The doc gave me a two year get through this period and then I will have a better chance of survival increasing the years to hopefully have it not show back up.  I have one year past, a pet scan in Aug. that I pray stays clean.  I have fought this beast and have no plans on giving up.  I wish I had known more and found this board back then, I wouln't have walked away so easily years ago.  Insist on more.  Once it gets in your blood or lymph stream it will travel and show back up again some day.  I would go after it now.  I hope all of this made sense, I have not really shared my story on here before, but after reading your post, I had to urge you to not do the same thing I did.  You should have faith in the doctor that he is doing all he can do.  If you don't get that, take charge, it is our life.  I wish you all the best and you will be in my prayers.

Kim

RE: Just diagnosed with melanoma...have questions

by jimmyB on Thu Jul 09, 2009 12:00 AM

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“ Just Diagnosed With

Melanoma………Now What ? “

(Adapted from the “How to make Good Choices from Bad Options”

MRF ‘mini-symposium” talk)

Casey Culbertson, MD

Chair – Melanoma Research Foundation

Stage III Patient

Introduction

Of all of the various skin cancers, melanoma is known to be the most deadly if not

caught in its earliest phases. Approximately 53,000 will be diagnosed with

melanoma and 7,800 will die this year from melanoma.

If you are reading this, you have undergone a biopsy (either of a skin lesion or a

lymph node) or have had other tests in which the diagnosis of melanoma is

suspected or confirmed.

So what do you do if you have just been diagnosed with or are

suspected of having melanoma ?

1st – take a breath … and read the following…..

st – take a breath … and read the following…..

Casey’s Rules of Melanoma as a Disease

1st You have been given a diagnosis – NOT a death sentence

2nd Melanoma survival statistics describe a ‘group’ of similar

patients…. but they may have NOTHING to do with YOUR

chance of survival

3rd In advance Stage melanoma, there is NO one “RIGHT” answer

(or “BEST” treatment) option for your melanoma

4th The BEST melanoma patient is an ACTIVE PARTICIPANT in his

or her treatment (not a PASSIVE RECEPIENT)

st You have been given a diagnosis – NOT a death sentence

2nd Melanoma survival statistics describe a ‘group’ of similar

patients…. but they may have NOTHING to do with YOUR

chance of survival

3rd In advance Stage melanoma, there is NO one “RIGHT” answer

(or “BEST” treatment) option for your melanoma

4th The BEST melanoma patient is an ACTIVE PARTICIPANT in his

or her treatment (not a PASSIVE RECEPIENT)

nd Melanoma survival statistics describe a ‘group’ of similar

patients…. but they may have NOTHING to do with YOUR

chance of survival

3rd In advance Stage melanoma, there is NO one “RIGHT” answer

(or “BEST” treatment) option for your melanoma

4th The BEST melanoma patient is an ACTIVE PARTICIPANT in his

or her treatment (not a PASSIVE RECEPIENT)

rd In advance Stage melanoma, there is NO one “RIGHT” answer

(or “BEST” treatment) option for your melanoma

4th The BEST melanoma patient is an ACTIVE PARTICIPANT in his

or her treatment (not a PASSIVE RECEPIENT)

th The BEST melanoma patient is an ACTIVE PARTICIPANT in his

or her treatment (not a PASSIVE RECEPIENT)

The ‘phases’ that most melanoma patients seem to go through (in this authors

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) requires 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.

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.

links to important

sites for more information on melanoma.

Important 1st Visit (Discovery Phase) Questions to ask your Physician

Important 1st Visit (Discovery Phase) Questions to ask your Physician

Why do you think I have melanoma?

Why do you think I have melanoma?

What is MY melanoma Stage ? (Has it been determined?)

What is MY melanoma Stage ? (Has it been determined?)

Do I need more tests to determine MY Stage ?

Do I need more tests to determine MY Stage ?

If I need more tests – what tests are they ?

Possible Tests that you may undergo

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)

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

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

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

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

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 site

Sentinal Node Biopsy – looks for involvement of lymph nodes that

melanoma may spread to from its primary site

Ultrasound – use of sound waves to try to make a diagnosis of melanoma

(usually in solid organs)

Ultrasound – 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

In situ melanoma

Stage I No ulceration (< 1mm depth)

No ulceration (< 1mm depth)

Stage II 1- > 4 mm depth

(with or without ulceration)

1- > 4 mm depth

(with or without ulceration)

Stage III Lymph node involvement

Lymph node involvement

Stage IV Distant mets to skin, subcutaneous

or lymph nodes; or mets to any visceral

Organs (lung / liver / brain / bone / etc)

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

In situ melanoma

Stage I No ulceration (< 1mm depth)

No ulceration (< 1mm depth)

Stage II 1- > 4 mm depth

(with or without ulceration)

1- > 4 mm depth

(with or without ulceration)

Stage III Lymph node involvement

Lymph node involvement

Stage IV Distant mets to skin, subcutaneous

or lymph nodes; or mets to any visceral

Organs (lung / liver / brain / bone / etc)

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

Why you need to know what your Stage of melanoma is ?

Why you need to know what your Stage of melanoma is ?

It determines if you need a surgical approach to your melanoma

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 need further testing during your surgery (sentinal node biopsy)

It determines if you will need adjuvant therapy after surgery

It determines if you will need adjuvant therapy after surgery

It determines if surgery is not indicated and other therapies (gamma knife / biochemotherapy

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.

nd physician visit. These can then be reviewed after the visit.

It determines if surgery is not indicated and other therapies (gamma knife / biochemotherapy

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.

nd physician visit. These can then be reviewed after the visit.

Important 2nd Visit (Diagnosis Phase) Questions for your Physician

Important 2nd Visit (Diagnosis Phase) Questions for your Physician

What is MY Stage of melanoma ? (and what does that mean)

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?

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 Chart

Stages of Melanoma Treatment Plans(s)

Stage O (in situ) Excision

(in situ) Excision

Stage I (primary < 1mm) Excision

(primary < 1mm) Excision

(Some centers will do

CXR +/- lab work)

Stage II (deeper invasion) Excision + SNB

(deeper invasion) Excision + SNB

? Adjuvant therapy

Stage III (LN involvement) Excision

(LN involvement) Excision

? No therapy

? Adjuvant therapy

No therapy

? Adjuvant therapy

Stage IV (Diffuse melanoma) Depends on site(s)

Involved

(Diffuse melanoma) Depends on site(s)

Involved

? Surgery vs. Biochemo,

? Radiation, gamma knife, etc

* Note that all the shaded therapies are somewhat controversial as to which is the

“RIGHT” therapy for advanced stage melanoma patients

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.

rd visit) what the plan for YOUR

melanoma treatment will be.

Will my surgery / medical treatment be done here or at another center?

Simplified Melanoma Staging / Treatment Plan Chart

Stages of Melanoma Treatment Plans(s)

Stage O (in situ) Excision

(in situ) Excision

Stage I (primary < 1mm) Excision

(primary < 1mm) Excision

(Some centers will do

CXR +/- lab work)

Stage II (deeper invasion) Excision + SNB

(deeper invasion) Excision + SNB

? Adjuvant therapy

Stage III (LN involvement) Excision

(LN involvement) Excision

? No therapy

? Adjuvant therapy

No therapy

? Adjuvant therapy

Stage IV (Diffuse melanoma) Depends on site(s)

Involved

(Diffuse melanoma) Depends on site(s)

Involved

? Surgery vs. Biochemo,

? Radiation, gamma knife, etc

* Note that all the shaded therapies are somewhat controversial as to which is the

“RIGHT” therapy for advanced stage melanoma patients

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.

rd 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

rd (Treatment Phase) physician visit

Important Information You want to find answers to when doing YOUR

“Homework” prior to your 3rd (Treatment Phase) physician visit

rd (Treatment Phase) physician visit

What seems to be ‘consensus’ for YOUR stage of melanoma ?

What seems to be ‘consensus’ for YOUR stage of melanoma ?

Excision, sentinal node biopsy, lymph node removal, etc

Excision, sentinal node biopsy, lymph node removal, etc

What seems to be ‘controversial’ for YOUR stage of melanoma ?

What seems to be ‘controversial’ for YOUR stage of melanoma ?

No therapy, adjuvant therapy, radiation, bio-chemotherapy, etc

No therapy, adjuvant therapy, radiation, bio-chemotherapy, etc

How do the major melanoma centers approach YOUR stage of disease ?

How do the major melanoma centers approach YOUR stage of disease ?

What is their ‘rationale’ for their suggested therapy

What is their ‘rationale’ for their suggested therapy

Are the only options for YOUR stage of melanoma “clinical trials” ?

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

– National Comprehensive Cancer Network

www.Cancernet.nci.nih.gov – National Cancer Website

– National Cancer Website

www.cancer.gov/cancerinfo/wyntk/melanoma – NCI site

– NCI site

www.melanoma.org – Melanoma Research Foundation

– Melanoma Research Foundation

www.mpip.org – Melanoma Patient Information Page

– Melanoma Patient Information Page

www.skincancer.org

www.melanomacenters.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

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

– National Comprehensive Cancer Network

www.Cancernet.nci.nih.gov – National Cancer Website

– National Cancer Website

www.cancer.gov/cancerinfo/wyntk/melanoma – NCI site

– NCI site

www.melanoma.org – Melanoma Research Foundation

– Melanoma Research Foundation

www.mpip.org – Melanoma Patient Information Page

– Melanoma Patient Information Page

www.skincancer.org

www.melanomacenters.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

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 organized the information YOU obtain

Make a list of the various treatment options for YOUR stage of melanoma

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

Compare / contrast how the large melanoma centers treat YOUR stage of disease

Look for consensus in their treatment options

Look for consensus in their treatment options

Determine how the various treatment options could affect your life

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)

(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

Make a ‘wish-list’ based on the information / decisions you have reviewed and made

YOUR ideal treatment plan (medical / surgical and length)

YOUR ideal treatment plan (medical / surgical and length)

YOUR ideal place the treatment will take place

YOUR ideal place the treatment will take place

YOUR ideal follow up

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!)

Questions you may want answered during your MD visit before agreeing to

any surgery or treatments are the following:

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!)

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?

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)

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?

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)

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

rd Doctor Visit

Should I consider getting a 2nd opinion if the surgery / treatment is complex or

controversial?

Possible Outcomes from 3rd Doctor Visit

rd Doctor Visit

Agreement on treatment and plan for YOUR therapy

Agreement on treatment and plan for YOUR therapy

Go and have a really nice dinner – then “just do it!”

Go and have a really nice dinner – then “just do it!”

Disagree on treatment and plan

Disagree on treatment and plan

Ask about 2nd opinions

Ask about 2nd opinions

Ask first from YOUR physician

Ask first from YOUR physician

Other resources

Other resources

Other major melanoma centers

Other major melanoma centers

www.mpip.org (post your concerns)

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.

There ain’t no answer.

There ain’t going to be any answer.

There never has been an answer.

That’s the Answeer

- Gertrude Stein

Gertrude Stein

contact me at dbreitfe@rochester.rr.com

http://melanomamissionary.blogspot.com/

 

RE: Just diagnosed with melanoma...have questions

by j3w3ly on Thu Jul 09, 2009 12:00 AM

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On 7/8/2009 j3w3ly wrote:

I was just diagnosed with melanoma, and I have some questions.  First, the doctor did a biopsy on the mole he removed, and from that said he can tell that it has not spread beyond my skin.  How can he be sure of this?  I thought there were other tests that had to be done to be sure the cancer had not spread.  I'm basically worried the doctor isn't doing enough to be sure that all the cancer can simply be cut out of my skin.  What if I have it elsewhere?  How long does it take to spread further?  I just have a million questions and feel like I'm not getting the answers I need from my doctor.  Any help or advice from someone with experience with this disease would be greatly appreciated.

I just got off the phone with my dermatologist, finding out what stage I'm in.  They told me I'm stage 2.  I asked if they would do other tests, and they said no they would not do any other tests (all they have done is a biopsy) to ensure the cancer has not spread.  They are also not recommending any follow up treatments to make sure it does not come back.  I'm not really comfortable with this plan, I'd rather be proactive and paranoid.  Even if I'm proven wrong, and I have no more cancer, at least I will have peace of mind.  I think I'm going to contact the Tennessee Cancer Specialists to see what they recommend.  Hopefully I can get an oncologist or other specialist who will be more proactive about this.

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