Diagnosed with Metastases Melonoma

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    • #10961
      Anonymous
      Inactive

      HI my name is Lisa I am 39 and diagnosed in a august with invasive melonoma in back of neck. I’m scared! First few doctors it was so bad one said go straight to chemo and I am 100 percent sure it spread somewhere and didn’t recommend SNB. I had a tumor mole back of neck 4.7 mm mitosis 7 and not ulcerated he cleared margin by 0.3 was referred to a better oncologist and I since noticed a swollen gland turns out after little biospy in His office pathology said it shows signs cancer. We only know one so far he has decided to do complete SNB removal of all nodes on side where tumor was. He will do a big clean up of neck where tumor was and get more healthy tissue as Margin was clear but not enough healthy tissue taken
      So surgery is Nov 4th I’m scared. At this point no one has mentioned stages so I will guess if so far one node is cancer by doing biospy in His office that would mean roughly stage 3? If he removes all nodes on side which he said would I require treatment chemo radiation clinic trails. No one really answers questions and if they do they have answers clearly because you have to waif for surgery and results.

      Any help advice would be great and survivors of this melonoma would be helpful as well.

    • #10971
      Annette Cyr
      Participant

      Hi Lisa,
      I am so sorry for your diagnosis. Many on this forum know how scary that can be and how little information is available AND the steep learning curve. I am sure if others get on here, they can share their stories as well. Where are you being seen – which hospital and city? We can send you some initial information if you would like – a handy booklet that has a lot of the information on the disease and also some of the questions to ask. From what you are saying, yes, it would be stage III – they have to finalise all the surgical removal before final staging can occur. Have they done any PET.CT scans to see if there is any further mets that may have spread? That is generally done right away as well, because that information is needed to determine the the right treatment path. You should also ask them to ensure they test you for the BRAF mutation (a mutation on the cancer cell that is found in about half of melanoma patients and opens up the possibility of treatment with targeted therapies. They won’t if disease is not advanced enough – below IIIC level, unless a clinical trial is available for earlier stage – that it requires further treatment, but considering the location and the mitotic rate and lymph nodes, I am hoping they are doing that right away as well) Good news is there is hope – we have a lot of treatment options available.

      I would also offer you the option of being linked up with a peer support volunteer. Our trained volunteers have been through a diagnosis and can help you with information and support. It helps to speak with someone who can relate to what you are going through. If you would like, feel free to email me at acyr@melanomanetwork.ca

    • #10998
      Anonymous
      Inactive

      Almost two years clear now was at dermatologist yesterday made me feel like I was a child talked down to me and gave me shit …..too much sun he said …I do not like wearing hats …he said had to wear long sleeves and pants all summer ….serioulsy I have always loved the sun ….if cancer is gone do I have to be so careful?? Can anyone help ,me understand…when I read stuff on melanoma says if was under 1 mine was .7 I shouldn’t have to really worry about returning wish others could tell me stories of there Own experiences ….thanks cheers vicki

    • #10999
      Annette Cyr
      Participant

      Hi Vicki,
      I am sorry your dermatologist made you feel bad during your visit. But on the other hand, I am so impressed that you have found one that is so passionate and smart about sun protection. Sun safety is a way of being – that is, it should be as normal as putting on your clothes each day. All people, and particularly high risk people (which you are, by the way), should be very diligent about wearing a hat, sunglasses, sunscreen, protective clothing that covers as much of you as possible and seeking shade in peak time periods between 10 and 3 pm. That you have had melanoma before makes me wonder if anyone explained the risk factors to you and how much at risk you are to develop another. You are so lucky that yours was detected early. If melanoma is not removed early, it can spread quickly throughout the body and the majority of people that develop metastatic melanoma do not survive. This is an unfortunate fact, even today with better treatments.

      Risk factors for skin cancers (another serious one that becomes more common as we age is squamous cell carcinoma, which can also be deadly and disfiguring) are fair skin, light eyes and light hair or red heads, skin that burns easily, family history of skin cancer or melanoma, more than 50 moles, use of a tanning bed, having a compromised immune system (transplant patients or others on medications).You are at high risk because you have had a previous melanoma. Most melanomas are related to sun damage where the radiation from the sun has actually altered the DNA that makes up our cells in our body. When you damage these cells, the body’s own immune system is not always able to identify the damage and cancer cells can grow undetected. The chances of this happening as we age are even greater, as our immune systems get depleted with aged and the constant damage from radiation from the sun accumulated over time.

      It is never too late or too early to be sun safe. It doesn’t mean you can’t enjoy the outdoors, just wear sun protection and reapply your sunscreen or cover up. Fairly simple. You are lucky to have ‘dodged’ a bullet the first time and having your melanoma removed. There are thousands of people who wish they were as fortunate as you. If you care about your health and long term survival, you will listen to your dermatologist.

    • #11025
      Anonymous
      Inactive

      Im hoping NOT to have malignant melanoma spreading to my glands.
      I have had two sites on my skin removed already. One on right arm and one on left shoulder area.
      Both were invasive malignant melanomas.
      For 3 months now there has been swelling in my left submandibular gland in my neck. Same side as the malignant melanoma site removed in March on shoulder area. I was sent back to cancer clinic last week.
      CT is being booked, waiting for an appointment. Feeling really nervous. There is a lump in the gland you can feel. Doctors wont say anything until they have the CT results and then possibly doing a biopsy. Im praying it is totally something else.

    • #11043
      Annette Cyr
      Participant

      Hi Moody123,
      Hopefully some others will chime in here and offer words of advice. I know how hard it is to wait for the results and how much anxiety goes with that. I am sure the majority of us can empathise. Never good to feel a lump and I guess one has to think that it is a possibility. But of course we try to rule out any other possibility too – can be a number of things other than a spread of the disease. On the other hand -I am glad you are in to have it looked at..I am hoping it is not a return of disease, but regardless, if you have a symptom like this, get it checked as soon as possible. Anything persisting longer than three weeks needs a professional look. Even if there is a spread to a lymph node, hoping the node is doing the job and catching it early. Just know that even if there is something there, we new have quite a number of treatment options proving very effective. If you think you need some peer support in the interim, call us at the MNC office 905-901-5121 and we can help you. Hopeful it is nothing and hoping you get in soon to have the results – let us know – we have a lot of information available.

    • #11050
      Anonymous
      Inactive

      Thank you Annette
      I go for a CT Mon Nov 21 and a MRI on Tues Nov 22. I will know after that. Feeling a bit nervous. Time will tell.

    • #11051
      Annette Cyr
      Participant

      Hi there,
      I am sure you are feeling anxious. To be expected. I don’t know if you have had a CT before and and MRI. Both can be intimidating for some – it is all new in many circumstances and overwhelming at times. If you are at all claustrophobic, you may want to ask your family doctor for something to take the edge off while in the scan. For me – the CT is nothing as it is fairly open and quick. The MRI can be a bit more intimidating – it is loud and they give you head phones or ear plugs depending on the hospital. It takes a bit longer, but they are generally on the microphone with you to guide you through it and let you know what is going on. Sometimes patients will ask for something to cover their eyes too, so they don’t feel confined. Good thing is they are being thorough with you – that is good to see. It can seem like a long process – particularly if you have a biopsy after (which I would kinda hope they do), but at least you will have some reassurance if it is a recurrence, and then what, if anything needs to be done. Try to distract yourself with some things that you like to do to help manage the stress. Keep us posted and wishing you well on Monday.

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