Newbie to ALL this!
September 25, 2016 at 10:00 pm #10742AnonymousInactive
I have had 3 basal cell carcinoma’s removed (from arm – 1 and face – 2). I found a horrible looking thing on my lower back and went in – biopsy has confirmed melanoma – I am waiting to have it removed. I am in a horribly dark place, have no idea what to expect and I am totally consumed with worry. I am getting something called MOHS. I have always been a person to ask questions but I just sat in front of the Doctor dumbfounded and bewildered. I have no idea what to ask except “am I going to die?”. So much for thinking I am an intelligent woman – this diagnosis has spun my world upside down. Any help would be greatly appreciated.
September 25, 2016 at 10:36 pm #10743AnonymousInactive
Hi Lam, Yes it is scary and you try not to imagine the worst but it seems as though your brain has other ideas. Do you know what kind of Melanoma? What was the Clark level? I was diagnosed with Stage III Malignant Melanoma in August of 2014, went thru two surgeries, 25 rounds of radiation and 7 months of Interferon before they found the cancer had spread to my lung and neck. I am now taking part in a clinical trial and my latest CT scan shows both tumors are gone or almost gone. I still have 8 months of treatment but am feeling pretty good in think due in great part to my naturopath at the Ottawa Integrated Cancer Centre.
When I was first diagnosed I was so overwhelmed I didn’t know what I should be feeling. I think the scariest thing is how fast things moved along, PET scan, surgery, radiation, meeting medical oncologist and radiation oncologist. Everyone told me not to look at the internet but personally I found it helpful as it gave me questions to ask the doctors about treatment options. I always had someone with me at all appointments and I created a file for all of my test results. You need to look at this as your new job and learn to ask for help and accept help. You will have good days and bad days which is fine. Be strong, you got this.
September 26, 2016 at 9:04 am #10744Annette CyrParticipant
And welcome to our on-line forum. Receiving a diagnosis is always a scary time and can be overwhelming for most people. Right away we are wondering if it has spread and am I going to die – you are not alone. The good news is that in 80 to 90% of cases, melanoma is caught early and treated effectively with surgical removal. Doesn’t mean we can be dismissive as it is also a tough disease and has to be monitored for a lifetime.
You should ask for copies of all of your medical reports as you go along. It would be helpful to have the pathology report/s to understand your staging. At present, they are obviously going in to get clear margins (this is dictated by treatment standards, depending on the depth of the lesion). Hopefully this next surgery will be your last and no further treatment or intervention will be needed. Final staging of the disease does not happen until the surgery is complete, but if the lesion was small, likely they will have already got it all and are just following through with standard procedures on margins. But, since you have had basal cell and melanoma, you will need to be monitored by a dermatologist regularly – likely every 6 months for the next two years and then perhaps annually, based on your particular diagnosis. Sounds like you may have had some significant sun exposure over the years, so sun protection is a must going forward, as it should be for everyone!
If you would like to send me an email, I can send you our guidebook on melanoma, to give you some accurate understanding of the disease and ideas about questions for your doctor. Feel free to ask us any other questions you may have. You are not alone and there are many patients on this forum that would be please to answer questions or help you with what you are feeling. We also have peer support options as well, where you can speak with another patient directly who has been through a similar experience. Let us know if you need help.
Annette – MNC
September 26, 2016 at 2:36 pm #10747AnonymousInactive
Hi Annette & Funshinegirl,
The fact that you responded is super helpful! I got a call this morning and I will go in on Thursday for a more thorough discussion with the physician. They were very kind and said I probably missed a lot of info when they first told me and they encouraged me to bring someone with me which I will do! I guess I will know a lot more then!
Annette – I would love to have a copy of the guidebook. I am not sure how to email you though? I have never participated in a discussion forum before so this too is all new to me. I will take you both up on your advice to get copies of all my pathology tests, etc and start a file.
September 26, 2016 at 5:59 pm #10748Annette CyrParticipant
So glad to hear you have an appointment. You can email me at firstname.lastname@example.org and I will email you our electronic version of the booklet. Understand that it is for all melanoma patients, so some parts may be dealing with advanced stage disease, which won’t apply at this time (and hopefully never). I think what may be helpful are some of the questions to ask your surgeon. For instance:
1. Can you explain my pathology report to me – what does it say at this point and what does that mean? Is this superficial cutaneous melanoma? When will you receive the final results of the pathology and will you be reviewing it with me?
2. Will this be surgery to get clear margins and how soon can it be scheduled? Will the surgery be day surgery under a local anaesthetic (usually this is the case)? Is there any skin graft involved?
3. Will any other treatment be necessary after surgery? How long will recovery/healing take?
I think these are the basics. If it is an early stage melanoma, you likely will not be sent to see an oncologist – just depends on the city you are in, but most likely not.
September 26, 2016 at 7:13 pm #10749AnonymousInactive
So happy that you are seeing the doctor on Thursday. Good luck. So much research is being done and new more effective treatments are being developed.
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