Home Forums Newly Diagnosed Stage III/IV Brand new to this and overwhelmed

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  • #22321
    brewgirl68
    Participant

    Hello, everyone –

    I received my diagnosis two days ago…seems like a lifetime ago. I found a lump in my right armpit on Christmas morning, but didn’t think too much about it. It didn’t hurt at all, so I went about the business of Christmas. I was also helping my 19 yo daughter recover from surgery (deviated septum) and working full-time, so I was busy. Christmas came and went, then the 26th was my kiddo’s birthday, then family arrived, then New Years, then back to work…all the while I was keeping track of the lump and waiting for it to go away. I finally called my primary doc (a general practitioner) and went in the next day. She felt the lump and did a breast exam, then referred me for a mammogram and ultrasound, which happened two days later on a Thursday. The mammo indicated no breast involvement, which greatly relieved me. The doc said that they want to do a biopsy, as the suspicion is lymphoma. The mass was 4.5cm x 2 cm. The following Tuesday I had the biopsy, and was told that results would be given in 24 hours. I called the doc the next day, they said that more tests were being done and the results would be available the next day. Ugh. This whole time I’m researching lymphoma and feeling not terrible about things as it can be very treatable. I was 100% certain that the pathology would reveal lymphoma and I was prepared for it. When I called the doc for the results, I was floored – absolutely taken by shock and despair. Malignant Melanoma. I was/am so confused – I haven’t had any skin issues that seemed noteworthy and I’m feeling quite well.

    So now the waiting begins. I have a CT scan scheduled for this coming Weds, and I’m terrified of what they will find. I am having some pains that I *think* I’ve had for a short time (maybe 2 months), but I also don’t know if I’m imagining or exaggerating these feelings. I don’t know if anyone will give me preliminary findings on Weds or not.

    On Friday I go to an appointment at the Lemmen-Holton Cancer Pavilion here in Grand Rapids, MI. I feel extremely lucky to be able to be a part of the Multi-disciplinary Melanoma Clinic, which meets only two times per month. I will arrive in the morning and get a private room. Then I will meet individually with an oncologist, a dermatologist, a surgeon and a nurse coordinator who will be assigned to me for the duration of the treatment plan. After I talk to each doc, I go to lunch. Over lunch, the docs convene and report each of their findings; then I come back and we all talk about what stage I’m in and what the treatment plan is. I’m so incredibly grateful that I don’t have to run around to various offices on different days, and I won’t have to worry about transferring medical records between offices.

    I’m so scared, overwhelmed, sad and angry. I’m trying to stay positive – after all, I feel quite well aside from the chest twinges (can’t even call it pain, really).

    Oh, and the day I got my diagnosis? Is also the day that my boyfriend (whom I live with) lost his job.

    So…that me. Thanks in advance for the support. Peace and blessings to you all.

    #66137
    Catherine Poole
    Keymaster

    Try to take it a moment at a time. Yes, it is overwhelming and there are many treatments for melanoma, it is treatable. You may have had an unknown primary lesion that spread within your body. You may only have a local spread and surgery may take care of it. Be sure to weigh the options when you are diagnosed and check in with us here. We are here to help and support you.

    #66138
    Linny
    Participant

    I can appreciate the whirlwind you’re in right now. I went through something similar with a lump that was found in my armpit. I was told to prepare myself for a diagnosis of either breast cancer or lymphoma. No one, and I mean NO ONE expected melanoma, especially since I never had a mole. Unfortunately, you’ll need some more testing done before they come to a conclusion. But here’s what you can expect:

  • You’ll probably have a very thorough skin exam at that visit. If doctors find a suspicious mole or freckle on your skin they will remove it and biopsy it. They will spend a lot of time looking at the area around your right armpit and shoulder. This is because melanoma cells usually drain into a nearby lymph node basin, which in your case was your right armpit.

  • If they find no moles on your skin, you probably have melanoma with an unknown primary, which is what I have.
  • They probably will discuss lymph node surgery with you. Lymph node surgery will determine how many nodes it has spread to. I had all the lymph nodes removed from my left armpit.
  • You still have some waiting ahead of you before you get a final answer. But we are here to support you.

#66139
brewgirl68
Participant

Your comments and kind words are so much appreciated. What a roller-coaster ride this has been for the past few days…especially since my fiancee lost his job on the day of my diagnosis. Yesterday I was doing well – feeling positive, no blubbering. Today – not so much. I’m worried about money, my job, my kiddo, my family. The emotional swings are wide and often and I hate it.

Is chemotherapy used to treat melanoma? I’m also worried about losing my hair :|

I’m terrified of what they will find on the CT scan, but we’ll just take it as it comes. I’m sure that I will be turning to you folks often…so thank you!

Sheila

#66140
Catherine Poole
Keymaster

Sheila,

There is no chemotherapy for melanoma that works well. We are blessed with immunotherapies which have less harsh side effects for the most part and also BRAF targeted therapies. You may want to avoid the harsher older therapies, of interferon and IL2 where hair loss may happen along with a dismal response. Again, try to take it a day and moment at a time, you can only control this moment in time. We are definitely here for you.

#66141
Linny
Participant

As Catherine pointed out, you’ll need to take things as they come. The first hurdle to overcome is that CT scan, which will help doctors determine if there is any distant spread. Hopefully they’ll do it with contrast, which means they put an IV solution into your veins. This solution helps make the image clearer but it comes with a weird side effect: when it hits your pelvis it makes you feel like you’re peeing when you actually are not. LOL. I just make sure I empty my bladder before going into the machine.

Treatment options will be discussed after doctors determine your stage.

The anxiety sucks, plain and simple. To help take the edge off of it, you might want to ask your primary care doc to prescribe some anti-anxiety meds for you.

#66142
brewgirl68
Participant

Thank you!

I’m trying my hardest to take things one moment at a time. That’s not my natural way of living…I’m a planner! I like having and making schedules, knowing what is coming, preparing for things waaaay ahead of time. So – big learning curve for me. But I can do it.

The scan on Weds will be abdomen/pelvis/thoracic with and without contrast. They gave me two jugs of that nasty “vanilla flavor” stuff that is like drinking liquid chalk. Ugh.

I asked if they will tell me anything after the scan, but, as I assumed, they won’t. I guess that’s just as well.

I guess I will be learning all this new lingo that you folks throw around…another learning curve :D

Your support is invaluable.

Cheers –

Sheila

#66143
Catherine Poole
Keymaster

the tests will be over before you know it! Be sure to look at our glossary when you are unsure of the lingo; http://melanomainternational.org/melanoma-facts/glossary-of-terms/#

and always ask! Do you have a good support person too?

#66144
brewgirl68
Participant

I do have great support Рmy mother, my fiancé, my work family and a whole boatload of friends and family. Aside from this nasty disease, I feel very lucky!

I know that everyone’s situation is different, but I’m guessing that things are going to start happening pretty quickly. I assume that they will want to put me on drugs ASAP along with surgery very soon. Is that generally the case?

Also, I have no idea how these treatments affect you. Are folks generally able to go to work and function somewhat normally during treatment? Again, I know that each situation is unique, but I’m wondering about generalities.

Thanks!

#66145
Linny
Participant

Yes, everyone’s case is different. Some people can manage side effects just fine while others cannot.

As for what treatment you get, it depends on how you’re staged and whether the melanoma is resectable or not. Resectable just means “removable via surgery”. And, that’s a good thing.

If it’s resectable, the melanoma will be removed. Your choice of treatment will begin after you’ve healed from the surgery. If it’s unresectable, you will be started on a treatment protocol in fairly short order.

Now here’s the kicker, if you’re Stage IV, you have a number of different treatment options available because your cancer is considered more advanced. But, if you’re Stage III your options are more limited. But hopefully that will change soon.

Regarding the scan, a radiologist will have to read it and then share the results with your oncologist who will then share them with you.

#66146
brewgirl68
Participant

Thanks so much for the support!

I go tomorrow morning for the CT scan…drinking the first jug of barium as I type. My pre-CT bloodwork yesterday came back within normal ranges. The WBC was .1 high, but not out of the world by any stretch. I’m taking that as a very good thing.

So much to learn on Friday. Wait, wait, wait…seems like the name of the game.

I will keep you all posted. Best wishes and peace to you all.

Sheila

#66147
Linny
Participant

Glad to hear your bloodwork looked normal. Am praying for the same results for your CT scan. Good luck tomorrow.

The waiting game definitely is not fun. :(

#66148
goldfidler
Participant

Sorry to meet you here but the good news is that you are in good company. The people who are replying to you are very knowledgeable and have been down your road already. I was diagnosed with Stage IIIc in June 2013 and found this forum to be invaluable for friendship and advice. As Linny already mentioned, she and many others on here have dealt with and are dealing with similar situations to which you are currently dealing. I started at Stage IIIc and thought it was the end of the world. I am now Stage IV but am participating in a new drug combo trial called MEDI4736 and it is working for me so far.

A couple of points:

– Don’t give up and keep your head. I know that is easier said than done. I too am a planner but you need to learn to deal with ambiguity for a while.

– Patience is important. It takes time for the doctors to run the right tests and find the right information in order to make the right decisions for your treatment plan.

– Don’t assume that your doctor is the most knowledgeable about the most cutting-edge treatment solutions. Catherine is the most knowledgeable person in that regard that I have ever found. A 2nd opinion on your case is never a bad idea either.

– In the last 24 months, there have been more improvements in melanoma treatment that you might realize. It all depends on your specific case. Every single diagnosis and patient is different. You need to do research and determine what is best for you.

– Use this forum. I cannot emphasize this enough. We are hear to support you and each other. We won’t abandon you and we will always be honest and supportive. You are among friends.

Stay strong. Keep fighting. Melanoma can be beaten. You can read many success stories here.

Always… Matt

#66149
brewgirl68
Participant

Today was my appointment with the melanoma multi-disciplinary team at Lemmen-Holton Cancer Pavillion here in Grand Rapids, MI. The news is very positive! I had a CT scan on Weds (ab/pelvis/thorax) that came back clean…so relieved! I met with a surgeon, an oncologist and a dermatologist. There was nothing visible anywhere on my skin, so no known primary. There either was primary and my immune system kicked it to the curb after it made its way to my lymph node (axillary), or it started in the lymph node. In any case, I was super relieved that there is NED in liver or lungs.

The next step will be a PET scan and a brain MRI, hopefully early next week. We have scheduled a wide excision for Feb. 11 – that should give enough time for the PET scan results to come back. There will not be a sentinel node biopsy. I guess that the PET scan and brain MRI will determine if there is more treatment necessary after the excision.

There is still a little bit of a road to travel, but things are looking up!

Thank you for your support!

#66150
Catherine Poole
Keymaster

Sounds good, most likely it started as a lesion on your skin and grew inward. But that is in the past and now you just live in the moment and each day. They are doing a lot of extra testing that I’m not sure I would agree with but if it gives peace of mind then it is worth it. Let us know how you are doing.

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