› Forums › General Melanoma Community › Completely new and in a foreign country
- This topic has 21 replies, 5 voices, and was last updated 8 years, 8 months ago by
stars.
- Post
-
- October 9, 2016 at 10:05 am
Hi everyone. I am new and just last week was told I have melanoma. I went to a dermatologist to have a mole looked at and they immediately removed it that very day. I got the results of the biopsy back and was told it was Melanoma and that they would be removing an extra cm from both sides of my original site. They said that it was likely that it was completely removed and this sample would probably indicate there are no cancerous cells in the surrounding tissue. However, how would they know for sure that nothing had spread to the lymph nodes?
I live in Germany and have only been here for a year, so my German is not as good as I would like it to be. My doctor speaks great English and is very kind and thorough and is supposedly one of the best around, so I trust her. However, I didn't even know what she was talking about as far is it being melanoma and what any of it meant. I feel stupid for not reading up on it beforehand, but was only expecting to turn up to get my stitches out, not to have another biopsy done.
They sat me down and asked what questions I had, but I didn't even know what to ask! I also didn't even ask to see my findings because they were in German and I knew I wouldn't be able to read them correctly.
I feel lost and silly for not knowing what to say or to even comprehend what was happening. I go in for a bandage change tomorrow and then to have the stitches removed in 2 weeks. Is there anything I should ask? Do i need to have any further tests done? Is there a chance that it could have spread to the lymph nodes? What should I look for?
I'm continuing to do research, but I am being careful not to google to many things for fear of freaking myself out. Any advice or help would be so greatly appreciated!
Thank you!
- Replies
-
-
- October 9, 2016 at 12:18 pm
Hi Samsmom, I have a video link for you which features a leading Melanoma specialist in the U.S.A. from Chicago named Dr.Jason Luke. The early part of the video talks about margins to take based upon how deep the primary mole depth is. The video continue on based on what would come next if you progressed to a higher stage Melanoma and what the standard of care options are. Best Wishes!!!Ed https://www.youtube.com/watch?v=eofW8d4J6sI
-
- October 9, 2016 at 12:18 pm
Hi Samsmom, I have a video link for you which features a leading Melanoma specialist in the U.S.A. from Chicago named Dr.Jason Luke. The early part of the video talks about margins to take based upon how deep the primary mole depth is. The video continue on based on what would come next if you progressed to a higher stage Melanoma and what the standard of care options are. Best Wishes!!!Ed https://www.youtube.com/watch?v=eofW8d4J6sI
-
- October 9, 2016 at 12:18 pm
Hi Samsmom, I have a video link for you which features a leading Melanoma specialist in the U.S.A. from Chicago named Dr.Jason Luke. The early part of the video talks about margins to take based upon how deep the primary mole depth is. The video continue on based on what would come next if you progressed to a higher stage Melanoma and what the standard of care options are. Best Wishes!!!Ed https://www.youtube.com/watch?v=eofW8d4J6sI
-
- October 9, 2016 at 8:41 pm
Hi,
Would suggest you ask for a copy of the biopsy report tomorrow.
It should tell you size, margins, mitosis, breslow depth, clarks level and staging.
Have a look on cancer research uk website- on the melanoma pages it will explain staging etc and dependent on the staging a snb may or may not be in your best interests.
Once you have the pathology it will probably be easier to join the dots and understand the reasons for the doctors suggested treatment / follow up.
Google translate may even be helpful…
More info is needed to make any meaningful contribution and I am sure your doc will be happy to supply the report as they will want you to be as informed as possible about your melanoma.
Best wishes
Deb
-
- October 9, 2016 at 8:41 pm
Hi,
Would suggest you ask for a copy of the biopsy report tomorrow.
It should tell you size, margins, mitosis, breslow depth, clarks level and staging.
Have a look on cancer research uk website- on the melanoma pages it will explain staging etc and dependent on the staging a snb may or may not be in your best interests.
Once you have the pathology it will probably be easier to join the dots and understand the reasons for the doctors suggested treatment / follow up.
Google translate may even be helpful…
More info is needed to make any meaningful contribution and I am sure your doc will be happy to supply the report as they will want you to be as informed as possible about your melanoma.
Best wishes
Deb
-
- October 10, 2016 at 5:10 pm
I Live in Germany too.
Did you do it at a Hospital or by a 'Haut Arzt'
They will mostly refer you to an Hospital which is specialized in Oncology.
1.You can ask for a copy of the biopsy results
2.You can ask in which Stage you are in.
3. Howoften you should get checked up?
I had checkup every 3 months. (My Primary mole was never found)
a. They took my blood.
b. Ultraschall/ Ultrasonic scan at my lymph nodes.
c. General Skin check to see for new suspicious moles.
d. PET – CT / Normal CT Scan / MRI Scans (I asked for a copy of the results from my Oncology)
e. Summary of the results were documented in 'Nachsorge Kalender' (Documentation was in German)
4. If you woult like to connect with other members / talk with a Psychosocial counseler you could look in to the following organizations
In Bavaria, the following organizations are available
http://www.bayerische-krebsgesellschaft.de/
https://www.brk-muenchen.de/wir-sind-fuer-sie-da/mit-beratung-und-betreuung/krebsberatung
-
- October 10, 2016 at 5:10 pm
I Live in Germany too.
Did you do it at a Hospital or by a 'Haut Arzt'
They will mostly refer you to an Hospital which is specialized in Oncology.
1.You can ask for a copy of the biopsy results
2.You can ask in which Stage you are in.
3. Howoften you should get checked up?
I had checkup every 3 months. (My Primary mole was never found)
a. They took my blood.
b. Ultraschall/ Ultrasonic scan at my lymph nodes.
c. General Skin check to see for new suspicious moles.
d. PET – CT / Normal CT Scan / MRI Scans (I asked for a copy of the results from my Oncology)
e. Summary of the results were documented in 'Nachsorge Kalender' (Documentation was in German)
4. If you woult like to connect with other members / talk with a Psychosocial counseler you could look in to the following organizations
In Bavaria, the following organizations are available
http://www.bayerische-krebsgesellschaft.de/
https://www.brk-muenchen.de/wir-sind-fuer-sie-da/mit-beratung-und-betreuung/krebsberatung
-
- October 10, 2016 at 5:10 pm
I Live in Germany too.
Did you do it at a Hospital or by a 'Haut Arzt'
They will mostly refer you to an Hospital which is specialized in Oncology.
1.You can ask for a copy of the biopsy results
2.You can ask in which Stage you are in.
3. Howoften you should get checked up?
I had checkup every 3 months. (My Primary mole was never found)
a. They took my blood.
b. Ultraschall/ Ultrasonic scan at my lymph nodes.
c. General Skin check to see for new suspicious moles.
d. PET – CT / Normal CT Scan / MRI Scans (I asked for a copy of the results from my Oncology)
e. Summary of the results were documented in 'Nachsorge Kalender' (Documentation was in German)
4. If you woult like to connect with other members / talk with a Psychosocial counseler you could look in to the following organizations
In Bavaria, the following organizations are available
http://www.bayerische-krebsgesellschaft.de/
https://www.brk-muenchen.de/wir-sind-fuer-sie-da/mit-beratung-und-betreuung/krebsberatung
-
- October 9, 2016 at 8:41 pm
Hi,
Would suggest you ask for a copy of the biopsy report tomorrow.
It should tell you size, margins, mitosis, breslow depth, clarks level and staging.
Have a look on cancer research uk website- on the melanoma pages it will explain staging etc and dependent on the staging a snb may or may not be in your best interests.
Once you have the pathology it will probably be easier to join the dots and understand the reasons for the doctors suggested treatment / follow up.
Google translate may even be helpful…
More info is needed to make any meaningful contribution and I am sure your doc will be happy to supply the report as they will want you to be as informed as possible about your melanoma.
Best wishes
Deb
-
- October 12, 2016 at 9:49 am
Hi
It sounds like the worst is behind you and you are getting good care. There is a good chance you are totally finished with melanoma. That said, you must be more informed than you are right now. You simply must or you will regret it down the track.
I suggest you get a copy of the report and make sure you understand:
– your Breslow depth (this is THE most important thing)
– whether your melanoma had a mitotic rate larger than or equal to one
– whether it was ulcerated
I am sure that the English words Breslow, mitosis and ulcerated are easily understood by your doctor and you can find out these three simple parameters. These are the 'big 3' and the Breslow is by far the most important. Get a copy of the full report for your files, even if you don't really understand it all.
Now, if your Breslow is under 1mm and you have a mitosis less than one and no ulceration, then you have done all you need to do. This would indicate a thin and non-aggressive melanoma, and you would simply have regular (say yearly) skin checks to be sure.
If your Breslow is over 0.75mm and you have either a high mitotic rate (equal to or more than one) or ulceration, you might want to consider a sentinel lymph node biopsy if it is still possible. Deeper than 0.75mm with high mitosis or ulceration becomes a bit riskier. It may or may not still be possible to get a SLNB, if you have already had a wide level excision then maybe not. However, you still should know about it being slightly riskier because that might mean you commit to more frequent checks e.g. 6 monthly.
-
- October 12, 2016 at 7:18 pm
Thank you for all of the wonderful advice. I did get a copy of my report and my dr. Explained more to me. Fortunately is was less than 1mm and she feels that this will be the end of it, but she would like to do regular check ups. I will also have her complete a full body scan as there are several other spots that are a bit suspicious.
I am very happy to have found this site and all of this information. Should this happen again, I want to be as informed as I can be so that I can ask the right questions.
if you have on melanoma, is there then a higher risk of getting more?
-
- October 12, 2016 at 7:18 pm
Thank you for all of the wonderful advice. I did get a copy of my report and my dr. Explained more to me. Fortunately is was less than 1mm and she feels that this will be the end of it, but she would like to do regular check ups. I will also have her complete a full body scan as there are several other spots that are a bit suspicious.
I am very happy to have found this site and all of this information. Should this happen again, I want to be as informed as I can be so that I can ask the right questions.
if you have on melanoma, is there then a higher risk of getting more?
-
- October 13, 2016 at 7:57 am
Under 1mm is great news! I think you are doing everything right. I think there is a slightly higher risk of getting another, unrelated, primary melanoma once you have had one. This article says five times the risk, which means 5% chance or so of getting a second. Not to worry, now you are getting regular skin checks, anything new would be found early. And of course, there's a huge chance that you'll never, ever get another.
-
- October 13, 2016 at 7:57 am
Under 1mm is great news! I think you are doing everything right. I think there is a slightly higher risk of getting another, unrelated, primary melanoma once you have had one. This article says five times the risk, which means 5% chance or so of getting a second. Not to worry, now you are getting regular skin checks, anything new would be found early. And of course, there's a huge chance that you'll never, ever get another.
-
- October 13, 2016 at 7:57 am
http://www.cancernetwork.com/melanoma/second-primary-melanoma-risk-high-among-melanoma-survivors
Sorry, forgot to link article!
-
- October 13, 2016 at 7:57 am
http://www.cancernetwork.com/melanoma/second-primary-melanoma-risk-high-among-melanoma-survivors
Sorry, forgot to link article!
-
- October 13, 2016 at 7:57 am
http://www.cancernetwork.com/melanoma/second-primary-melanoma-risk-high-among-melanoma-survivors
Sorry, forgot to link article!
-
- October 13, 2016 at 7:57 am
Under 1mm is great news! I think you are doing everything right. I think there is a slightly higher risk of getting another, unrelated, primary melanoma once you have had one. This article says five times the risk, which means 5% chance or so of getting a second. Not to worry, now you are getting regular skin checks, anything new would be found early. And of course, there's a huge chance that you'll never, ever get another.
-
- October 12, 2016 at 7:18 pm
Thank you for all of the wonderful advice. I did get a copy of my report and my dr. Explained more to me. Fortunately is was less than 1mm and she feels that this will be the end of it, but she would like to do regular check ups. I will also have her complete a full body scan as there are several other spots that are a bit suspicious.
I am very happy to have found this site and all of this information. Should this happen again, I want to be as informed as I can be so that I can ask the right questions.
if you have on melanoma, is there then a higher risk of getting more?
-
- October 12, 2016 at 9:49 am
Hi
It sounds like the worst is behind you and you are getting good care. There is a good chance you are totally finished with melanoma. That said, you must be more informed than you are right now. You simply must or you will regret it down the track.
I suggest you get a copy of the report and make sure you understand:
– your Breslow depth (this is THE most important thing)
– whether your melanoma had a mitotic rate larger than or equal to one
– whether it was ulcerated
I am sure that the English words Breslow, mitosis and ulcerated are easily understood by your doctor and you can find out these three simple parameters. These are the 'big 3' and the Breslow is by far the most important. Get a copy of the full report for your files, even if you don't really understand it all.
Now, if your Breslow is under 1mm and you have a mitosis less than one and no ulceration, then you have done all you need to do. This would indicate a thin and non-aggressive melanoma, and you would simply have regular (say yearly) skin checks to be sure.
If your Breslow is over 0.75mm and you have either a high mitotic rate (equal to or more than one) or ulceration, you might want to consider a sentinel lymph node biopsy if it is still possible. Deeper than 0.75mm with high mitosis or ulceration becomes a bit riskier. It may or may not still be possible to get a SLNB, if you have already had a wide level excision then maybe not. However, you still should know about it being slightly riskier because that might mean you commit to more frequent checks e.g. 6 monthly.
-
- October 12, 2016 at 9:49 am
Hi
It sounds like the worst is behind you and you are getting good care. There is a good chance you are totally finished with melanoma. That said, you must be more informed than you are right now. You simply must or you will regret it down the track.
I suggest you get a copy of the report and make sure you understand:
– your Breslow depth (this is THE most important thing)
– whether your melanoma had a mitotic rate larger than or equal to one
– whether it was ulcerated
I am sure that the English words Breslow, mitosis and ulcerated are easily understood by your doctor and you can find out these three simple parameters. These are the 'big 3' and the Breslow is by far the most important. Get a copy of the full report for your files, even if you don't really understand it all.
Now, if your Breslow is under 1mm and you have a mitosis less than one and no ulceration, then you have done all you need to do. This would indicate a thin and non-aggressive melanoma, and you would simply have regular (say yearly) skin checks to be sure.
If your Breslow is over 0.75mm and you have either a high mitotic rate (equal to or more than one) or ulceration, you might want to consider a sentinel lymph node biopsy if it is still possible. Deeper than 0.75mm with high mitosis or ulceration becomes a bit riskier. It may or may not still be possible to get a SLNB, if you have already had a wide level excision then maybe not. However, you still should know about it being slightly riskier because that might mean you commit to more frequent checks e.g. 6 monthly.
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.