- June 2, 2018 at 10:16 pm
I'm glad I found this site and this forum. A lot of what I'm reading here is over my head because I am so newly diagnosed. I know in time I will come to be able to understand all of this too well.
My story is pretty short since I haven't gotten my staging yet (it will be stage iii or stage iv). I'm 56. I had noticed some itching and weird feeling in my upper thigh/groin but it wasn't painful, just…a little off. It started to bother more towards the end of April and I could see the area was swollen a bit though I didn't feel a specific mass.
I went to the doctor's on May 3, had a CT-Scan, then an ultrasound and a core biopsy and got my diagnosis on May 14 – melanoma that had spread to the lymph node in my groin. Since then, I have begun care at Dana-Farber and had appointments with the care team. I had my PET/CT scan yesterday afternoon and brain MRi this morning. They haven't been able to find the original melanoma.
And on Tuesday I meet with the medical oncologist to get the results, find out the staging and learn what treatment plan they recommend.
I'm devastated, obviously. I have depressive disorder as well and that's a bit of an extra bump in the road in terms of how well I'm managing all this. This upcoming week, my primary concern is going into my Tuesday meeting with as good and understanding as possible of the medical part of things – having a good understanding of the various stage 3 and stage 4 treatment options. I'll be going to the appointment alone, but recording it and reviewing with a nurse friend later.
I hope to be able to learn a lot here and understand better what's in store for me.
- June 2, 2018 at 10:38 pm
Sorry about your news. There is no way around this…it sucks. I think it would be a good idea to do some reading on this sight to refresh yourself. Celeste (Bubbles) has a primer and lots of really great posts about treatment options etc. One thing that I would like to say….don't go to an important appointment like this alone. You need emotional support. As a cancer survivor, the widower of a cancer patient and the husband of a second wife with a cancer diagnosis I have learned. Always have emotional support with you for the important appointments. Dear friend, family member, etc, but you need that. God bless and take care. You will be okay!
- June 2, 2018 at 11:36 pm
Hi Kathy, I am truly sorry that you are dealing with this. This is a great place to find information about treatments and support. Please find someone to go with you to your appointment, with a depressive disorder it is so important for you to have a shoulder to lean on. There are good treatment options and like many have told me, take a deep breath and try to relax. You will feel better when you have your plan for treatment and then you can get busy kicking melanoma 's behind! I will keep you in my thoughts.
- June 3, 2018 at 12:02 pm
Thank you for the responses, I'm spending the mornign doing reserach on here and other sites. I know that the best option is to have someone comes with me to the appointment but unfortunately, there really isn't anyone who can. If I waited until Friday to get the news I could have someone with me, but I can't wait any longer, the anxiety is physically overwhelming at this point and I *need* to know.
I'm hopeful I can arrange to have the oncology social worker, whom I've alredy met with once, to be there with the appointment but if not, I'll be talking to her afterwards. I'll also be audio-recoring it, so I can review it later with a nurse friend. I have a small handul of family and friends and none live that close to me, but they are available for emotional support – just logistically, not close enough to be there for me in person. I realize I need to loook for volunteer groups, home health care aides, someone to help with housework, etc and that type of thing, depending on what the course of treatment involves and how able I'm feeling.
I'm also quite stressed about work, since I support myself. It's all overwhelming so for the next 2 days, zi'm gonna contcentrate on doing my research and making it to Tuesday afternoon…
- June 3, 2018 at 2:58 pm
Hi Kathy, I’m sorry that you’ve joined our ranks but, at the very least, this is a great board with smart, kind, supportive people! As everyone has already said, it’d be great if you could have someone there with you but I also understand not being able to wait any longer. I truly found the waiting to be the hardest part! One thing that will hopefully help is that, in terms of working and support at home, many of the great treatments available today should hopefully give you the ability to continue on with your day-to-day life. You might be a bit more fatigued or itchy or something else but the immunotherapy drugs are great in that they can have relatively minimal side effects.
The diagnosis is a very tough pill to swallow but there are a lot of really great treatments available now and hopefully you’ll start to feel better once you know the next steps!
Sending light, love and positive vibes,
- June 4, 2018 at 1:55 pm
Hi Kathy- So sorry to hear you are going thru this. I also go to DFCI and they are great. I couldnt have anyone go to my initial meeting, but Dr H let me conference someone in on the phone during the appointment – which was helpful as I sort of lost track of what i wanted to ask. Perhaps that is an option for you?
All the best- beth
- June 6, 2018 at 1:13 am
I had the oncology social worker there with me, and also recorded it. I had a million questions and could have gone on for hours, but the upshot is stage 4, no organs affected and LDH is normal. I start ipi/nivo on Friday….it’s all very overwhelming but I feel so fortunate to be treated at D-F.
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