› Forums › Cutaneous Melanoma Community › New to MRF & also recently diagnosed with melanoma
- This topic has 20 replies, 8 voices, and was last updated 12 years, 11 months ago by
boot2aboot.
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- May 19, 2011 at 3:43 am
Hello, I have recently been diagnosed with melanoma and am open to information and encouragement from those who are already walking this path of surgery / treatment / survival.
Hello, I have recently been diagnosed with melanoma and am open to information and encouragement from those who are already walking this path of surgery / treatment / survival.
My story……. I am a 4th grade teacher, and while I was on spring break in early April, I had a biopsy completed on a skin mole that had recently changed colors. The biopsy results came back as malignant melanoma (cancer – stage I), and I was referred to a surgical oncologist. After meeting with the surgeon, the plan was to have a lymph node trace completed and the "suspicious / hot" lymph nodes were to be removed surgically. At this time I was told there was a 6% chance that the cancer had spread to the lymph nodes……and my thoughts were very positive because I knew that meant there was a 94% chance that the cancer had NOT spread. So, 5 lymph nodes were removed and sent to pathology after the lymph node trace on May 3rd.
Unfortunately, 1 of the 5 nodes that was removed was positive (25% of the node itself was malignant tumor). I went from cancer-stage I to cancer-stage 3.
Now I need a PET scan, a CT scan, and a brain MRI, to see if the cancer has spread anywhere else; those scans will be completed Thursday, May 19, 2011. Another surgery (which will require hospital stay) will be scheduled (as soon as the PET / CT / MRI results are available), and all the lymph nodes in the area of the right underarm down to the original melanoma site will be removed and sent to pathology. IF there is any indication that the cancer has spread beyond the lymph nodes, that will put me at cancer-stage 4. About 2 weeks after all the lymph nodes have been removed from that area, I will start treatments.
I WILL be completing the remaining days of the school year and packing up the classroom. I will have the summer break for the second surgery, treatments, rest, & recuperation.
While it is difficult to stay strong, I continue to look up and count my blessings…….like having two outstanding sons (after being told I would never have children) who are both college graduates, and they have jobs! In the words of one of my sons this past week, "You're a great mom who has loved and guided us well. What other mother can say she has raised both an engineer and an architect? You've done very well by us, mom." What better praise can a mother have than that? 😉
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- May 19, 2011 at 3:52 am
I'm sorry that you've had to join us but you will get lots of support and info here.
I was also a 4th grade teacher. When mel spread to my bladder I left my job. At that point it was my 33rd year teaching assorted grades. I totally understand your wanting to finish out the year with your "kids". I don't know what part of the country your from but at least here in SC they only have a few more weeks.
Have they discussed thoughts on treatments? Are you going to a melanoma specialist?
Your very upbeat through a very difficult time. Let us know how tomorrow goes. Depending on the hospital you could get your results within hours or it might take several days.
If you have any questions about the scans let us know,
Linda
Stage IV
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- May 19, 2011 at 3:52 am
I'm sorry that you've had to join us but you will get lots of support and info here.
I was also a 4th grade teacher. When mel spread to my bladder I left my job. At that point it was my 33rd year teaching assorted grades. I totally understand your wanting to finish out the year with your "kids". I don't know what part of the country your from but at least here in SC they only have a few more weeks.
Have they discussed thoughts on treatments? Are you going to a melanoma specialist?
Your very upbeat through a very difficult time. Let us know how tomorrow goes. Depending on the hospital you could get your results within hours or it might take several days.
If you have any questions about the scans let us know,
Linda
Stage IV
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- May 19, 2011 at 4:02 am
Welcome to the board. Sorry you have to be here. You sound like you have a pretty good grip on what's going on. I'm sorry that you have that one pesky node. Stage I would be an easier pill to swallow than stage III
You don't mention where you live, or where you are being treated, but right now might be the time you want to take a breath and consider whether or not you are seeing the best doctor for your case.
It sounds like you are lined up to do the very most commonly recommended treatment…but sometimes that's not always the best. Have you had a consult with a melanoma specialist? Is that an option for you? There's certainly a chance that a specialist would recommend the same thing, but maybe not. Maybe instead of doing immediate surgical removal and putting you on interferon, they might suggest that the tumor material being removed be genetically tested for potential trial. Or, could be (almost likely from the sound of it) that all of your tumor material has already been removed. Some doctors might not recommend that ALL your lymph nodes be taken. (have you discussed the physical consequences of this surgery with anyone?)
I guess my point is that if you are seeing a general medical oncologist, well..that might be the best situation if you don't have access to a specialist, but if you live somewhere near enough, or have the wherewithal to travel to a Melanoma Specialist or a major Melanoma Center, then you should do it. Those people who specialize are more in contact with what's going on in the cutting edge circles of clinical trials and treatments.
You could end up traveling 500 miles and meeting a Melanoma specialist who agrees with your local doc that an LND and interferon is the way to go, or you might find someone that gives you an entirely different take on things.
While right now you have an urgent desire to just..get it done, right now might really be the time to learn and explore your options.
Good luck with your scans tomorrow. It's nerve wracking waiting for scan results,so I hope you hear them soon.
Dian in spokane
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- May 19, 2011 at 4:02 am
Welcome to the board. Sorry you have to be here. You sound like you have a pretty good grip on what's going on. I'm sorry that you have that one pesky node. Stage I would be an easier pill to swallow than stage III
You don't mention where you live, or where you are being treated, but right now might be the time you want to take a breath and consider whether or not you are seeing the best doctor for your case.
It sounds like you are lined up to do the very most commonly recommended treatment…but sometimes that's not always the best. Have you had a consult with a melanoma specialist? Is that an option for you? There's certainly a chance that a specialist would recommend the same thing, but maybe not. Maybe instead of doing immediate surgical removal and putting you on interferon, they might suggest that the tumor material being removed be genetically tested for potential trial. Or, could be (almost likely from the sound of it) that all of your tumor material has already been removed. Some doctors might not recommend that ALL your lymph nodes be taken. (have you discussed the physical consequences of this surgery with anyone?)
I guess my point is that if you are seeing a general medical oncologist, well..that might be the best situation if you don't have access to a specialist, but if you live somewhere near enough, or have the wherewithal to travel to a Melanoma Specialist or a major Melanoma Center, then you should do it. Those people who specialize are more in contact with what's going on in the cutting edge circles of clinical trials and treatments.
You could end up traveling 500 miles and meeting a Melanoma specialist who agrees with your local doc that an LND and interferon is the way to go, or you might find someone that gives you an entirely different take on things.
While right now you have an urgent desire to just..get it done, right now might really be the time to learn and explore your options.
Good luck with your scans tomorrow. It's nerve wracking waiting for scan results,so I hope you hear them soon.
Dian in spokane
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- May 19, 2011 at 4:51 am
Sorry that you have joined our ranks. But now that you have, you can be sure you'll find much support here.
You seem remarkably poised for a newcomer to MM, especially one with a Stage III diagnosis. Back in 1997, when I became Stage III, "panic" was the operative word for me. Just know that metastatic melanoma, even Stage IV, is not necessarily the death sentence people fear. In 2000, I became Stage IV, and lived without a recurrence until this year. The disease came back in spades this year – but it's not over yet. Not by a long shot! I guess I'm trying to say that there is real hope for many more great years for you.
I wish you speedy healing,
Harry
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- May 19, 2011 at 4:51 am
Sorry that you have joined our ranks. But now that you have, you can be sure you'll find much support here.
You seem remarkably poised for a newcomer to MM, especially one with a Stage III diagnosis. Back in 1997, when I became Stage III, "panic" was the operative word for me. Just know that metastatic melanoma, even Stage IV, is not necessarily the death sentence people fear. In 2000, I became Stage IV, and lived without a recurrence until this year. The disease came back in spades this year – but it's not over yet. Not by a long shot! I guess I'm trying to say that there is real hope for many more great years for you.
I wish you speedy healing,
Harry
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- May 19, 2011 at 8:10 am
Sorry you've had to become one of us, but you will have a great support group here. I know how frightening it must be waiting for all those test results; my husband and I were where you are only 2 months ago.
Please tell us, are you already seeing a melanoma specialist or a regular oncologist? If you are not seeing an oncologist who specializes in melanoma, you need to be. Melanoma is a very different animal from other cancers, and you want to be seeing someone who has access to the latest and most cutting edge treatments as well as medical trials.
What kind of treatments are currently being proposed to you based on the different stages you could be at? Please tell us the general area where you live; we may be able to recommend specialists in your area.
Please let us know when you hear the results of your tests!
Michelle, wife of Don, Stage IV
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- May 19, 2011 at 8:10 am
Sorry you've had to become one of us, but you will have a great support group here. I know how frightening it must be waiting for all those test results; my husband and I were where you are only 2 months ago.
Please tell us, are you already seeing a melanoma specialist or a regular oncologist? If you are not seeing an oncologist who specializes in melanoma, you need to be. Melanoma is a very different animal from other cancers, and you want to be seeing someone who has access to the latest and most cutting edge treatments as well as medical trials.
What kind of treatments are currently being proposed to you based on the different stages you could be at? Please tell us the general area where you live; we may be able to recommend specialists in your area.
Please let us know when you hear the results of your tests!
Michelle, wife of Don, Stage IV
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- May 19, 2011 at 11:14 am
Welcome to our forum. You have joined a community of great people who continue to defy any
statistics that you may have seen. There are many knowledgeable people here have access to the
latest treatments through clinical trials.Although most oncologists have some idea of what the most effective treatments could be, this is
not always the case. Some will continue to only recommend old treatments that they are most
familiar with because that is what they are comfortable doing. Melanoma is very different from
other skin cancers, and one really needs to be fully informed of the latest research in order to
deal with it successfully.Good luck with your scans, and please let us know your results if you would like to discuss them.
Hope this helps.
Frank from Australia
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- May 19, 2011 at 11:14 am
Welcome to our forum. You have joined a community of great people who continue to defy any
statistics that you may have seen. There are many knowledgeable people here have access to the
latest treatments through clinical trials.Although most oncologists have some idea of what the most effective treatments could be, this is
not always the case. Some will continue to only recommend old treatments that they are most
familiar with because that is what they are comfortable doing. Melanoma is very different from
other skin cancers, and one really needs to be fully informed of the latest research in order to
deal with it successfully.Good luck with your scans, and please let us know your results if you would like to discuss them.
Hope this helps.
Frank from Australia
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- May 20, 2011 at 2:44 am
Thanks to all for the encouragement and welcomes to the board……..even though like you, I wish I was not here…..but it is what it is……..so here I am. As several mentioned, waiting is hard………and now I await the results of the CT's / PET / MRI scans that were completed today.
I am a Georgia native!! I am from the North Altanta, GA area and am being treated @ St. Joseph's Cancer Center & Hospital in Atlanta. I have already submitted my information, as I know it now, for clinical trials that may be available in my area.
Most of your replies mentioned making sure I had the best doctor/surgeon, and so far, I feel that I am in the care of the doctor/surgeon who was meant to be helping me walk this path. Some background info on my doctor/surgeon:
Atlanta surgeon Chris C. Lee M.D.
Background
Dr. Chris Lee joined Georgia Surgical Associates, a division of North Atlanta Surgical Associates, PC with fellowship training in surgical oncology.
Doctor Lee attended the Indiana University, where he became a member of the Phi Beta Kappa academic honor society and graduated summa cum laude with a Bachelor of Science degree in Biochemistry. While at Indiana University, Dr Lee received numerous awards relating to Chemistry and Biochemistry including the R.J. Grim Scholarship and William H. Bell Award.
Doctor Lee earned his Doctor of Medicine at the Indiana University School of Medicine and completed his categorical, general surgical residency at Akron General Medical Center in Ohio. He served as the chief resident during his final year of residency and served as a clinical instructor in surgery for medical students. During residency, he was accepted as a research fellow at the John Wayne Cancer Institute in the Department of Protein Biochemistry and Immunodiagnosis, where he conducted translational research in tumor immunology of melanoma.
Following surgical residency, Doctor Lee transitioned to California where he completed a surgical oncology fellowship at the John Wayne Cancer Institute (an SSO-approved surgical oncology fellowship) as a clinical and research fellow. He was awarded the ASCO merit award for his research on unknown primary melanoma, which was presented at the annual American Society of Clinical Oncology meeting.
Doctor Lee has authored and coauthored in numerous abstracts and peer-reviewed research journals including the Journal of Clinical Oncology, Annals of Surgical Oncology, American Journal of Surgery, Cancer Investigations, and Clinical Nuclear Medicine pertaining to surgical oncology research such as melanoma, tumor immunology, and hepatobiliary cancers.
Doctor Lee is board certified in surgery. His professional memberships include Society of Surgical Oncology (SSO), American Society of Clinical Oncology (ASCO), American College of Surgeons (ACS), Alpha Omega Alpha (AOA) medical honor society, and Christian Medical Dental Association (CMDA).
Again, thanks to all for your encouraging words. I hope that in time, I may be returning words of encouragement to each of you.
Blessings,
Sharon-
- May 20, 2011 at 2:53 am
Sharon,
Looks like we have more in common that both having taught 4th grade. I live in Anderson SC which is about 2 hours from downtown Atlanta. We are 19 miles into SC. What town do you live in?
There is another on the board from Atlanta. She doesn't post often, I'll try and find her e-mail address for you. She was being treated in Atlanta and then went to MDAnderson. Not sure where she is being treated now.
Linda
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- May 20, 2011 at 2:59 am
I have found Sue's e-mail but can't find a post from her. If you want her e-mail just let me know and I'll send it to you. Don't think it's right to just post it. It's often nice to have someone close by that you can actually meet in person and talk to.
Linda
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- May 21, 2011 at 4:18 am
if you feel comfortable with your mel onc…stay with him…but it would not be out of line or disloyal to seek a second opinion…it actually might help, especially if you ask your onc who he would recommend…that way he also gets insight…
advocate someone to research clinical trials
make sure to take someone who asks good questions to your doctor;s appts…
i found reading two books helped me:
anti-cancer by david servan-schreiber
life over cancer by keith block
boots
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- May 21, 2011 at 4:18 am
if you feel comfortable with your mel onc…stay with him…but it would not be out of line or disloyal to seek a second opinion…it actually might help, especially if you ask your onc who he would recommend…that way he also gets insight…
advocate someone to research clinical trials
make sure to take someone who asks good questions to your doctor;s appts…
i found reading two books helped me:
anti-cancer by david servan-schreiber
life over cancer by keith block
boots
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- May 20, 2011 at 2:59 am
I have found Sue's e-mail but can't find a post from her. If you want her e-mail just let me know and I'll send it to you. Don't think it's right to just post it. It's often nice to have someone close by that you can actually meet in person and talk to.
Linda
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- May 20, 2011 at 2:53 am
Sharon,
Looks like we have more in common that both having taught 4th grade. I live in Anderson SC which is about 2 hours from downtown Atlanta. We are 19 miles into SC. What town do you live in?
There is another on the board from Atlanta. She doesn't post often, I'll try and find her e-mail address for you. She was being treated in Atlanta and then went to MDAnderson. Not sure where she is being treated now.
Linda
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- May 20, 2011 at 2:44 am
Thanks to all for the encouragement and welcomes to the board……..even though like you, I wish I was not here…..but it is what it is……..so here I am. As several mentioned, waiting is hard………and now I await the results of the CT's / PET / MRI scans that were completed today.
I am a Georgia native!! I am from the North Altanta, GA area and am being treated @ St. Joseph's Cancer Center & Hospital in Atlanta. I have already submitted my information, as I know it now, for clinical trials that may be available in my area.
Most of your replies mentioned making sure I had the best doctor/surgeon, and so far, I feel that I am in the care of the doctor/surgeon who was meant to be helping me walk this path. Some background info on my doctor/surgeon:
Atlanta surgeon Chris C. Lee M.D.
Background
Dr. Chris Lee joined Georgia Surgical Associates, a division of North Atlanta Surgical Associates, PC with fellowship training in surgical oncology.
Doctor Lee attended the Indiana University, where he became a member of the Phi Beta Kappa academic honor society and graduated summa cum laude with a Bachelor of Science degree in Biochemistry. While at Indiana University, Dr Lee received numerous awards relating to Chemistry and Biochemistry including the R.J. Grim Scholarship and William H. Bell Award.
Doctor Lee earned his Doctor of Medicine at the Indiana University School of Medicine and completed his categorical, general surgical residency at Akron General Medical Center in Ohio. He served as the chief resident during his final year of residency and served as a clinical instructor in surgery for medical students. During residency, he was accepted as a research fellow at the John Wayne Cancer Institute in the Department of Protein Biochemistry and Immunodiagnosis, where he conducted translational research in tumor immunology of melanoma.
Following surgical residency, Doctor Lee transitioned to California where he completed a surgical oncology fellowship at the John Wayne Cancer Institute (an SSO-approved surgical oncology fellowship) as a clinical and research fellow. He was awarded the ASCO merit award for his research on unknown primary melanoma, which was presented at the annual American Society of Clinical Oncology meeting.
Doctor Lee has authored and coauthored in numerous abstracts and peer-reviewed research journals including the Journal of Clinical Oncology, Annals of Surgical Oncology, American Journal of Surgery, Cancer Investigations, and Clinical Nuclear Medicine pertaining to surgical oncology research such as melanoma, tumor immunology, and hepatobiliary cancers.
Doctor Lee is board certified in surgery. His professional memberships include Society of Surgical Oncology (SSO), American Society of Clinical Oncology (ASCO), American College of Surgeons (ACS), Alpha Omega Alpha (AOA) medical honor society, and Christian Medical Dental Association (CMDA).
Again, thanks to all for your encouraging words. I hope that in time, I may be returning words of encouragement to each of you.
Blessings,
Sharon
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Tagged: cutaneous melanoma
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