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May 29, 2013 at 10:47 pm #21319
This is my first time writing on this forum. Thanks for all the information and support that I have already received, through reading alone.
I am stage IIIb. I had a wider excision of left thigh area and a SLNB last Christmas week. SLN was postitive (largest deposit 1.3mm). I had groin dissection 31st of January, of the superficial nodes. There were eight of them. All eight nodes were clear.
Other information I can include is that my original mole was Breslow thickness 3mm, Clarks Level IV, focal early ulceration (I don’t know what that means to be honest), mitosis 2. I’m almost certain the wider excision area had clear margins.
I have developed lymphoedema in my left thigh and hip area but, thankfully, I am managing it now with the help of compression garments and self massage and regular monitoring in the hospital. I also have inflammatory arthritis so I can’t manage to do much exercise, which doesn’t help.
I have some fibrosis under the initial SLNB incision site, left groin. My MLD therapist seems to be concerned about it but my GP is not.
I am due to see my surgeon next week. It will then have been almost four months since I saw him last. At that time I was just after my surgery. My question I want to put out there to anyone who can help is ‘what questions should I be asking him?’ He is not a dermatologist. His title is ‘plastic surgeon’. I have never seen an oncologist and have only ever dealt with him (surgeon) and a few dermatologists. For now, it is one of the dermatologists alone who is handling my ‘watch and wait’ 3-monthly follow-ups. She appears to be lovely but I have only seen her once. (sorry for all the extra information but I am trying to include as much information as possible!)
Why exactly am I seeing my surgeon? Will his only interest be in the healing of my scars? This week, an area of my scar seems to be stinging me a bit. Also, I can see an obvious red dot on the scar which seems to stand out from the rest of the scar. These are both new observations. I have never had a reason before to think twice about the area. I don’t want to appear anxious to the certain. I just want to be assertive. My surgeon doesn’t say much. He doesn’t seem to much like answering questions either! This time around, I want to be armed with appropriate questions. I had no idea what to ask initially. It was all so new to me.
Also, re. the area in my groin which has fibrosis – how can he or I be sure it is just that and not melanoma? Of course I know it probably is fibrosis but is there any chance it could be a lump? I’m not worrying much about it to be honest but, that said, I don’t want to make any assumptions!
I might as well ask another question as I’m writing! – about follow up scans and bloods. My dermatologist told me that I will have no follow up scans or bloods, unless there is good reason to have a scan. The idea of this is to reduce anxiety in patients, she said. I don’t feel very confident about this. Is it not better to discover the melanoma has spread, earlier rather than later, or am I doomed either way!?
Sorry for all the questions but this site seems to be a well of information
Thanks in advance!
AnneMay 29, 2013 at 11:26 pm #60964Catherine PooleKeymaster
You aren’t doomed! Welcome to our forum and the rollercoaster ride we’ve all taken. There really aren’t any good stage III therapies out there, so watch and wait is a good holding pattern for now. A baseline scan, CT, is sometimes recommended. You could see an oncologist, but it should be one who is experienced with melanoma. Where do you live? We can possibly help you find a specialist. Otherwise the recommendation from a general oncologist will be interferon, an old drug, with toxicity and no overall survival benefit. I’m sure others can fill you in on the stage III experience. But your surgeon is there to make sure you’ve healed properly.May 30, 2013 at 12:18 am #60965msue5Participant Hi Anne
You and I have a similar history. I had nodular melanoma 3mm lt inner thigh with mitosis of 8 diagnosed Dec 2009. My SLNB was neg however but I didn’t stay that way very long. I also have inflammatory arthritis from Lupus and was on steroids and Methotrexate for this. My lupus never involved organs. Just rashes,severe joint pain and fatigue. Things started to get complicated with some Dr’s wanting me off the lupus meds and others saying it was ok. I was being seen at a Melanoma Clinic seeing Derm/Onc and Surgical Onc. In June My Rhematologist recommended I seek a Medical Onc who was also an internist. Up to that point no scans had been done. This was prior to Yervoy and Zelboraf had been approved. The 1st thing done was a PET Scan (neg) and those were alternated with CT Chest,Abd and Pelvis and included lt leg to knee. I stayed on my lupus meds since I was monitored. Less than a year after diagnosis I progressed to 3b with groin node with extra capsular extension. Many complications followed my complete lt groin dissection. I am now stage .4 When I was first diagnosed the thoughts were that no existing treatments would help so why do scans. Not true anymore. If Yervoy and Zelboraf were not approved and I had no scans I would never have known about progression in thoracic area and now neck and rt axillary. You need scans. By the time you have symptoms it would be too late. You should be tested for Braf mutation and be seen at a Melanoma Center. I am now on Yervoy and will get my next infusion Mon June 3. Hope this helps.
Mary SueMay 30, 2013 at 10:36 pm #60966
Thanks so much Catherine and Mary Sue for your replies. Catherine, I know I’m not doomed but sometimes I wish there was a solid plan for stage III. Sometimes it feels like they are saying ‘sorry, we can’t do anything for you!!’ I guess one could say I am lucky to be at the watch and wait stage and I am grateful for that, I really am.
I am living in Ireland…. there doesn’t seem to be much melanoma support in my area, to be honest. I am glad to have been recommended this site. It really is great.
Mary Sue, I’m sorry you have had many complications. I had to come off my meds for my arthritis but have recently started on a new and milder drug. I have been feeling good the last two weeks but I’m not sure whether this is just a co-incidence. I have been out of work, as a primary school teacher, since last September because of my arthritis. Melanoma then decided to made an appearance in the middle of it all! Can I ask you how is your mobility is now Mary Sue? Can you work? I am slow to take on the stress of working through chronic pain. That’s no way to live! Melanoma has given me a new insight to life. Happiness, my health and family are all that matter to me any more.
I will see my surgeon on Wednesday, as I said, and will see what he has to say for himself. I think I will go to my g.p. with my concerns and see what she feels. Thankfully, she is a super support.
Thanks again. AnneJune 1, 2013 at 3:01 am #60967msue5Participant
I am unable to work due mostly to surgical complications from abdominal surgeries that left me with abd spasms when just walking 10 feet and I was a nurse on my feet 12-14 hr shifts. I worked through my inflammatory arthritis. It was incredibly hard. I would have ice packs on my hands to use computer to do my paperwork after my shift was over. Towards the end I had to get my daughter to come pick me up and drive me to my car so I could start my long commute home. Can I ask what your inflammatory arthritis is from? It is usually from an auto immune disease and involves the small joints in hands and feet and involves both sides. My knuckles and wrists and ankles and feet are affected but I have done better than I thought I would after stopping meds. I had to stop due to wound healing issues while on prednisone and Methotrexate. There was talk of a link between Methotrexate and Melanoma and the prednisone use speeding up my Melanoma development.
I feel very strongly about getting at least baseline PET SCAN. I found my groin node myself but would never had known about thoracic nodes that were attached to my esophagus until much later and by then they would have done permanent damage to my esoohagus. Even Ct of Chest,Abd and Pelvis and affected leg to the knee have been used on me. Also you need original tumor tested for Braf.
Let me know how you make out but I think you should push these issues. It could save your life!June 4, 2013 at 1:15 am #60968Shirley ZParticipant
I just wanted to say welcome. I am stage 3C for almost 7 yrs now. Rather then retype everything you can read some of my history under the offered trial post.
The advice you have been given is the same I would offer. Mary Sue has been through an incredible ordeal and she is a super sweet person with a lot of knowledge and incredible strength.
Catherine was there for us from the moment I was diagnosed and works tirelessly to bring us correct and current information. She was a godsend at a time when we were so confused and overwhelmed.
Melanoma is so very unpredictable. I have been so fortunate, despite a very dismal prognosis. Every individual is different. You have to stay on top of things, but you also have to live your life. There are ups and downs and a lot of frightening moments. On a positive note it is also a good wake up call to what is really important in life.
Best Wishes to you.
Shirley ZJune 4, 2013 at 9:30 am #60969
Thanks Msue5 & Shirley,
I have been in such good spirits the last few weeks. As you said Shirly, melanoma truely is a wake-up call. Small things don’t bother me anymore and I’m so much living in the moment these days that I can’t tell you what I did yesterday or what I’m doing tomorrow without referring to my diary!!
Msue5, I didn’t get much chance to analyse your message re. arthritis and meds etc. and put proper thought into a reply. I just quickly wanted to reply to you both now, in thanks for your posts. I am heading off to see my surgeon in a few hours. I’m not thinking much about him though at mo. To be honest, it’s my g.p. I’m heading to see in a minute and that’s playing on my mind more. I will get back to you with a more thoughtful message after I’ve seen both. Thanks once again for your kind support,
AnneJune 14, 2013 at 12:13 am #60970
Just to say that I saw my surgeon last week. He scheduled an ultrasound of my scar (groin dissection) for the following day, to rule out a recurrence. I wasn’t expecting this. It happened so fast that I didn’t have time to think about it. I went back this Tuesday to be told all was fine. Relief!
Also, last week, I had an immediate mri of my lumbar spine after visiting my G.P. I won’t have the results until next week. My G.P. reckons that I have arthritis in my spine (facet joints). I am not worrying about those results for now, though I do wonder why I got an mri appointment so fast…
Also, I had a gynae appointment last week due to recent symptoms I’ve been having. This also was swiftly scheduled for me! As a result, I’m now scheduled for further investigations & procedures on the 28th of this month (‘to rule out cancer’ the gynae said…) This was a bit scary I must admit. I have been telling myself that I am prepared for melanoma recurring, if it does, but the possibility of being hit with a new and unfamiliar cancer was very unsettling. However, I’m trying not to think about gynae stuff for now but sometimes when my symptoms are severe I get scared. Please God there will be a simple explanation for my symptoms.
Then, last night (Wednesday), I discovered a lump in my left arm pit. I made a few phonecalls to the hospital this morning and have to wait until Tuesday week, the 25th, to see my surgeon. I went to my G.P today so she could look at it. The lump is more like a big bulge. My G.P. did a lot of poking and prodding but said that, though she could feel the bulge, she couldn’t find a definite lump. She said this was good but that I still will need to get it checked out. Fingers crossed this lump will end up being nothing too significant.
I think I’m beginning to get an insight into how living with melanoma goes …. Up to two weeks ago I was patting myself on the back for getting as far as I have in my recovery. I was really beginning to put it all behind me and was learning to live in the moment and have hope. I am still in good form, thankfully, but I realise that the calmness and peace of mind that we work so hard to achieve can quickly disappear as soon as a worrying symptom appears. I am trying not to take on worry unless I am told that I have reason to. For now, I just need to get all the ‘ruling-out-of-cancer-tests’ out of the way! Wish me luck!June 14, 2013 at 1:14 am #60971Shirley ZParticipant
Very happy to hear that the ultrasound came back fine. Hopefully your surgeon will be able to give you good news also on the buldge under your arm. Is it on the same side as your melanoma? Always good to have things checked out.
I hope the appt on the 28th goes well for you. Try not to worry too much. I know its easier said than done. I am 7 yrs out from my orignal 3C diagnosis. almost 4 yrs out from the recur. I still worry when something doesn’t seem quite right. It never completely goes away, so you are not alone.
I’m sorry everything seems to be hitting you at once. Hoping all turns out well and you can get back to a sense of normal again.
Keep us posted.
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