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  • in reply to: My Decision #59058
    GaylaB
    Participant

    Your Mel is exactly where mine was and I did have total dissection- SNB same as yours – micromets could not be determined as nevus or melanoma.

    The dissection has ruined my life.

    It has been 7 months, I have lymphedema, plus a 7 year old that needs an active mom.

    Be glad you stood by your decision.

    My dissection showed all negative so the SNB was certainly nevus 😯

    I was rushed by a surgeon, scared too death and now live a painful life. Compression, therapy, pain, lots if pain

    Maybe one day a cure/ treatment will be found for lymphedema – meanwhile I have therapy at 1:30 today 😥

    Best of luck

    Gayla

    in reply to: How are you controlling the swelling and lymphedema? #57563
    GaylaB
    Participant

    Thandster,

    Has your swelling been determined post op or lymphedema ?

    Curious if it is just post op….

    Still praying that’s what the majority of mine is- the pump is FABULOUS- if it comes to that for you (hopefully it will not). But it does wonders. Very pleased with it even though my therapist was against it in the beginning, she was actually impressed with the results!

    Keep me posted!

    Gayla

    in reply to: NEED HELP UNDERSTANDING THESE NEW PATHOLOGY REPORTS! #59039
    GaylaB
    Participant

    Thanks for the info golden girl! I am certainly going to get in with this procedure.

    Gayla

    in reply to: NEED HELP UNDERSTANDING THESE NEW PATHOLOGY REPORTS! #59037
    GaylaB
    Participant

    I am near Emory, that is where my WLE , SNB and total dissection were done. I am NED , there was no node involvement although in the SNB there were micromets that couldn’t be determined whether melanoma or nevus, that is how I ended up with stage III staging. However, my oncologist now says I am actually stage II, but if course I cannot be re-staged so stage III is where I am.

    I will call to see if Emory has the photography.

    I just don’t want to be cut, especially on the leg that now has lymphedema, I am having such a difficult time with it already, that could make it much worse.

    Thank you for the response!

    Gayla

    in reply to: NEED HELP UNDERSTANDING THESE NEW PATHOLOGY REPORTS! #59035
    GaylaB
    Participant

    Also, I would love the photography.

    I live in Georgia- do you know where to have this done?

    Thanks

    Gayla

    in reply to: NEED HELP UNDERSTANDING THESE NEW PATHOLOGY REPORTS! #59034
    GaylaB
    Participant

    Catherine,

    Would you go with the recommendation of wide excision or just let it be?

    I really don’t care to be cut on unnecessarily ….

    Still trying to bounce back from August WLE -SNB- then total lymph node dissection…

    The doctor scheduled all these excisions for next week, I cancelled out until I learn further information.

    Rushing into the total dissection, which was so unnecessary, has me very skeptical of everything.

    I will be in therapy for lymphedema possibly forever because of the dissection…

    That has me not so trusting of being rushed into things.

    Thanks!

    Gayla

    in reply to: How are you controlling the swelling and lymphedema? #57561
    GaylaB
    Participant

    Hi Thandster and everyone else!

    Things are good with lymphedema therapy, I am having good days and bad days… Cannot hit the floor in the morning without pulling that stocking on however:(.

    If I go without it 5 minutes, I pay for days 😮

    I have finished my first round of therapy, last week was my last visit. I’m going to do it at home then sign on again in a few weeks. I need a break.

    Still undecided how much swelling is still post op. A friend I met here had his surgery same time, very similar story as mine and he is still swollen so keeping my hopes up this is still some post op going on. I am starting another thread- got 3 biopsies back – not melanoma – but require wide excisions ….???? Starting to think I need a new derm or at least a second look at these biopsies. Wow!

    Gayla

    in reply to: Hello all- oncologist visit in the 2nd! #58216
    GaylaB
    Participant

    Skin scan on Monday actually involves an excision on my back – not any sort of skin cancer but it is something that could cause a problem ( can’t recall the terminology used on the biopsy results)

    Also have 4 small moles to be removed for biopsy so the visit isn’t going to be a fun one

    😯

    I’m still elated about my oncologist visit though- as many of you know – dr appointments can consume your life!

    There were maybe 2 weeks in December that I went a week with NO appointments!

    Now, Stone Mountain here we come!

    Wishing everyone a wonderful 2013!

    Gayla

    in reply to: Hello all- oncologist visit in the 2nd! #58212
    GaylaB
    Participant

    Scan is CLEAR!!

    I thank God- he is given all the credit in my heart:)

    Prayers have been answered! Next visit is in 3 months with medical oncologist and she so NO imaging:). What a relief!

    I do have a skin scan Monday with my dermatologist though! He will catch it early if anything suspicious comes up:)

    Have a great day!!

    Gayla

    in reply to: Hello all- oncologist visit in the 2nd! #58210
    GaylaB
    Participant

    Mary Sue,

    You are truly an inspiration to all of us here on this board :D

    I will post the results on Wednesday- Keeping the faith that the news is wonderful and I can take my son to Stone Mountain next month 😆

    Gayla

    in reply to: Hello all- oncologist visit in the 2nd! #58206
    GaylaB
    Participant

    How are you feeling after the treatment and Cyberknife?

    I am so sorry you are having to go through this Mary Sue , I just hope you have a very good support system at home.

    I called to see if they would give me the scan results over the phone today but absolutely not

    Guess I must wait until next Wednesday for results.

    We have a new cancer center here in Atlanta- Cancer Center of America, I think it’s called. It was not open when I was initially diagnosed and going through surgeries but from reading about it, it is state of the art technology and integrates holistic and modern medicine. It may be where I end up.

    Not feeling as good about this transfer to Cancer Center of Ga- it is out of Athens but they have a satellite office in my little town, and it was packed with patients for the one doctor that travels here once a week….

    Just wasn’t what I was used to coming from Emory, I was used to be treated as a person there, not a statistic.

    If I don’t go back to Emory, I will go to the new center. I simply cannot foresee me staying with this lady.

    I had a gut feeling to not remove these lymphnodes and I ignored it so I will not ignore the gut feeling this time in leaving this satellite office. Lymphnodes were clear and I had the feeling they were, now I have life changing lymphedema from removing it. Therapy for the rest of my life….

    She spent less than 10 minutes with me and seemed overwhelmed with 30 patients waiting – it was unreal for 1 doctor to be that overloaded.

    Especially an oncologist.

    Hope everyone has a wonderful evening and keep me in your prayers – good news next Wednesday!

    Take care

    Gayla

    in reply to: Hello all- oncologist visit in the 2nd! #58204
    GaylaB
    Participant

    Hi Mary Sue,

    It’s good to hear from you and I hope you are feeling well…I have been checking on you on the board.

    My lymphedema therapy is almost to an end, insurance approved it through January then I suppose we will re-apply to do it again.

    This time I am going to opt for regular PT since it is here locally and won’t have to do the 40 mile drive 1 way- the day of therapy is a 3 hour ordeal with travel time. Plus I have a 7 year old, trying not to affect him as little as possible. He did make the comment he was tired of Dr visits and mommy’s leg hurting :(

    Broke my heart.

    It is just as tough on them as us because he is too young to understand it all and he talks alot about heaven lately.

    I am waiting on my visit on the 16th which will be results of yesterday’s CT and follow-up with the new Dr.

    Not sure I will be staying with this one, I was scheduled with another that my former oncologist had a great deal of respect and knowledge of but I got threw a curve ball and ended up with a new Dr., new to the practice and just out of school…she didnt even know my cancer and started looking at my arms???? I said. “Uh, it’s melanoma and on my right knee.” LOL.

    She had absolutely no records on me and luckily I had my own with me! I have all paths, notes and surgery records in a folder with me on visits so I can make notes.

    After much thought on it last night, I decided I would agree to 1 scan a year. The rest of it can be X-ray. And I think 6 months instead of 3 months…..

    I cannot consume my life and thoughts with Dr visits and scans….

    I must live my life and trust in God that he has this in his control and no matter what I or any Dr says, it is what it is and that is his will…

    Have a great day!

    Gayla

    in reply to: Hello all- oncologist visit in the 2nd! #58202
    GaylaB
    Participant

    Quick question to some of you that have been dealing with this longer than I have- my other medical oncologist did not agree with CT scans in my situation, he felt it was too much radiation for what he considered stage II and a chest X-ray would suffice, however as I was transferred to another oncologist – due to distance of travel- she was 30 years younger and insisted on a CT….

    Opinions anyone with experience?

    My husband doesn’t want the CT but we did one anyway today, I was afraid NOT to….

    Gayla

    in reply to: Hello all- oncologist visit in the 2nd! #58201
    GaylaB
    Participant

    New oncologist scheduled a CT and it was done this morning. Way too early to be out and about in freezing temperatures;) LOL.

    I see her on the 16th for the results- feeling good about it.

    She determined to alternate CT, Chest X-ray, PET on each year anniversary of diagnosis, then so on and so on….so next will be Chest X-ray in 3 months. PET in July.

    Hopefully that will not be too much radiation exposure.

    I hope this year brings all of us on this board a cure….this could be our year!

    God bless and I will post on the 16th after I get my good news!

    Gayla

    in reply to: How are you controlling the swelling and lymphedema? #57559
    GaylaB
    Participant

    I went with my gut and WOW! I love it :P

    Actually it’s 7 am and I am wearing it again 😆

    I can’t see my therapist again for 10-14 days until she gets approval through insurance, yesterday was an intake evaluation and she staged me 1 or 2- and determined swelling was still post op somewhat, which is VERY good news!

    My foot never actually swelling until a few weeks ago and that was after myofacial therapy, do perhaps that was just too aggressive therapy.

    I am doing manual drainage immediately after removing the pump so so far, so good!

    Gayla

Viewing 15 posts - 1 through 15 (of 79 total)