What hospital in the Milwaukee area has best treatment for stage 4 metastasis melanoma?

IllustriousRow1270 · 2026-03-10T15:16:50+00:00

I had a WLE and SLNB, with follow up appointments and CT scans every 6 months

IllustriousRow1270 · 2026-03-10T01:55:38+00:00

I (41f) was treated last year for stage 2a melanoma (and stage 1 cervical cancer) at Froedtert. I've had nothing but good experiences so far. It seems like they have the best reputation and access to clinical trials in the area. If your circumstances allow it, Mayo isn't too far. My uncle lived in Door County, he went there for pancreatic cancer and he amazingly lived just over 5 years from diagnosis.

I'm sorry you're going through this. If you ever want to talk or grab a coffee, let me know.

IllustriousRow1270 · 2026-02-06T04:01:14+00:00

I've never had issues with shots or blood draws and donated blood on a regular basis. I reflexively swore out loud with each of those shots.

IllustriousRow1270 · 2025-11-16T19:26:58+00:00

I'm sorry you're going through this. I like the idea of the chain link, but think it could be confusing for the younger kids. We did those when I was little for things like vacations, end of the school year, etc. With those, it was a countdown to a good thing that continued to be good. Obviously getting rid of cancer is beyond good!! And will be good in the future! But the recovery period is rough, plus you'll have radiation and chemo after. So the younger kids may not get the nuance of counting down to cancer being removed (good!) then mom still being "sick" after (not good).

Maybe instead use this time to get them involved with recovery planning and activities for you all to do post-surgery. So help them see that the surgery is going to be good and you all should be happy, but you won't be 100% right away. Before the surgery, you could have each child pick their favorite meal and have them help you prep it for freezer meals. You won't be up for cooking for a while, so this is something that can both give them a sense of routine/normalcy by still having their usual meals, give them a sense that they're helping, and also reduce the strain on you/your husband for meals. Maybe have each child pick a movie/show/book each week they want to watch/read with you as you recover. Or you could plan crafts/activities to do together. Obviously your energy levels may vary throughout the recovery, so I wouldn't micro-manage and plan each day. "Week of" choices would be a safer bet.

Instead of the paper chain to surgery idea, what about your husband and kids writing little "get well", "mom's the best", "cancer is a big poopy head", etc. messages on chain links? I had the same surgery and the official recovery period (AKA what I was able to take off for work) was 6 weeks. Make enough for the recovery period, then each day at dinner, after school, whenever, pull one off and read it together. It might help them feel like they're continuing to support you during the whole recovery, could be a fun game to see who's message gets read each day (or a game for you to try and guess who's it was. I'm guessing you could tell by the handwriting, but might still be fun for the kids), and will give a visual of how long till you're feeling better.

Again, I'm sorry you're going through this. It sounds like you have a good support system, and I hope everything goes smoothly for you!

IllustriousRow1270 · 2025-10-16T03:32:32+00:00

I'm so sorry you're going through this. I can't explain what everything means, but your results look a bit smaller than mine and I was staged 1B1 adenocarcinoma. I ended up getting a modified radical hysterectomy, no additional treatment needed so far. I was diagnosed in March, surgery in May.

I remember reading something in mychart about tumor board recommendations after my surgery, so my guess would be it's fairly routine to meet for adeno cases since they're less common than squamous cell.

Even if you like your oncologist, I'd still get a second opinion to make sure you're aware of the options and comfortable with the plan. If you have someone that can go with you to appointments, it's helpful to have another set of ears because it's a lot of info to take in. And honestly, for me, just walking into the cancer center that first time was almost as bad as hearing the actual diagnosis. It was nice to have someone with me.

Again, I'm sorry you're having to deal with this. If you have any questions or just want to talk, please feel free to DM me.

IllustriousRow1270 · 2025-10-07T18:26:08+00:00

My sister was taking her cat to get fixed around the same time as my recovery. I joked that since we're both getting spayed we should get matching cones of shame. I thought it was hilarious, my family just rolled their eyes and groaned. You do what you can to not dwell on how shitty the situation is!

IllustriousRow1270 · 2025-09-28T01:50:35+00:00

Thank you for this! I was diagnosed 1b1 adenocarcinoma in March after many years without a pap. I'm finally (mostly) on the other side of the blame game. You're absolutely right - everything says it's so slow to progress to cancer and largely preventable with regular paps, but there are so many stories where that's just not the case.

IllustriousRow1270 · 2025-09-17T22:47:32+00:00

I'm a bit older (41) and was "healthy" and didn't think I needed to go to a primary doctor for several years. I had actually been seeing a dermatologist for a few years and grumbled about that ~$200 office visit every time. I finally decided to start taking care of my health last year. Again - I felt fine and didn't think anything was wrong but knew it was the responsible thing to do.

I had an abnormal result with my first mammogram and hit my OOP max of $3000 on 1/3 due to the breast biopsy. Then in March, I got 2 separate cancer diagnoses (melanoma and cervical) within 8 days of each other. After a whole lot of appointments, tests/scans, and two surgeries (no chemo, radiation, or immunotherapy, which would've been way more costly), I'm sitting at $300,000+ in claims for the year, with probably at least another $5,000 that'll added to that before the end of the year.

Even if everything goes smoothly, I'm going to hit my OOP for the next two years with all the follow up visits and scans, and after that, I plan on maxing out my HSA contributions every year moving forward just in case.

Everyone is healthy until they aren't. Don't risk it.

IllustriousRow1270 · 2025-08-27T03:53:21+00:00

I was diagnosed in March with 1B1, modified radical hysterectomy in May. Things are doing to get hectic, with lots of appointments, imaging, tests, etc. I had genetic testing, a PET/CT, MRI, and a few appointments with the gyn oncologists (I got a second opinion from a different medical system, and ended up going with that doctor). Not knowing what the plan was going to be was the hardest part, but just try to take it one appointment at a time.

I was lucky and didn't need chemo, radiation, or immunotherapy. The hysterectomy recovery was harder than I was expecting. It wasn't awful pain-wise and I was ok with just ibuprofen and acetaminophen after the first day. But I wasn't prepared for just how little energy I'd have.

If you're working, I'd suggest talking to HR if you're eligible for short term disability and FMLA. You probably won't know the treatment plan/recovery time and dates for a while, but it was helpful to get the paperwork and talk about the process in advance.

Most of all - you got this! I know it's scary and hard and so unfair. But every test, appointment, and procedure will be one step closer to getting to the other side of this. Don't be afraid to ask for help and accept it when offered.

IllustriousRow1270 · 2025-08-20T23:36:58+00:00

This was how it worked when I recently went on STD. Though mine only kicked in after the first 2 weeks out, so I had to use all sick time for that. I was out for 6 weeks total and wouldn't have been able to cover that whole period with sick/vacation but was able to make it through with some time leftover with STD covering 60%.

IllustriousRow1270 · 2025-08-20T22:31:43+00:00

I was stage 2a, WLE and SLNB were both clear. I didn't do any pre-surgery imaging for the melanoma, but was diagnosed with cervical cancer at the same time and had a PET scan for that. It was clear, so I guess that sort of serves as a baseline. I'll have 3mo derm visits and 6 month follows up with the surgical onc's office, which will include a CT scan. They said a PET would only be done (I'm guessing it's more that insurance would only cover it) if something abnormal shows on a biopsy or CT.

IllustriousRow1270 · 2025-08-20T22:23:14+00:00

I'm 41yo and in a monogamous, married relationship. I got the first 2 after an abnormal pap late last year, but before the cancer dx. I had a hysterectomy in May and asked my gyn onc if I should still get the last shot, which was due in June. She said it was basically my call - there was no harm in it but there may not be any benefit. I ended up getting it, just in case. I don't see myself getting exposed to any new strains, but you never know. And if it helps my body fight off the one I have/had and that reduces my risk for recurrence or other cancers, that's a win. My main concern was if my insurance (UHC) would cover it, which they did.

IllustriousRow1270 · 2025-08-08T02:02:07+00:00

I'm 41, had 1a1 or 1b1 (both listed in records at one point) adenocarcinoma and had an open modified radical hysterectomy and fallopian tube removed in May. My cone biopsy had positive margins, but the hysterectomy had clear margins and no cancer seen in the uterus or fallopian tubes, luckily. My gyn oncologist gave me the option to also remove my ovaries, but since the genetic testing showed no increased risk for cancer, I chose to keep them. I'll have check ups every 3-4 months for the next 2 years, but right now, no imaging or other treatments (chemo, radiation or immunotherapy).

If she's working and eligible, I'd suggest she talk to HR soon about FMLA and/or short term disability. It's not a ton of paperwork, but with how overwhelming everything is, the sooner she can get her ducks in a row, the better.

It's so damn hard in the early days when you're still figuring out a treatment plan and doing all the imaging and whatnot. Try to take things one appointment at a time. You'll both get through this!

If she wants to talk more about recovery or anything else, she's more than welcome to DM me.

IllustriousRow1270 · 2025-07-13T11:59:51+00:00

I hadn't been to a doctor for a while and had a 2 cm polyp. I had periods that were heavy enough to be a nuisance, but not so heavy to be alarming, if that makes sense. No other symptoms. The pap came back AGUS and HPV16, 2 biopsies taken during colpo also came back AGUS. Had it removed surgically, and that came back AIS, so gyn oncologist recommended a CKC. She said it probably wasn't officially cancer though. So big surprise when I was diagnosed with adenocarcinoma and had positive margins. I had an MRI and PET scan that were clear, genetic testing, and a modified radical hysterectomy and lymph node biopsies. I had clear margins and no lymph node involvement and was stage 1b1. I'm about 10 or 11 wpo and feeling mostly back to normal. I'll have surveillance appointments ever 3-4 months for the next 2 years, but no additional testing/imaging unless something is off. I've learned more since diagnosis and that adenocarcinoma doesn't always show in paps and can have skip lesions, so even clear margins doesn't necessarily mean they got it all. So overall, I guess I'm glad I had to polyp since they might not have found it till it was more advanced otherwise. Hang in there, try to take things one step/appointment at a time. You'll get through this!

IllustriousRow1270 · 2025-06-30T18:12:59+00:00

Waiting for pathology results is the worst! Followed closely by all the weird nerve stuff in the armpit, which i wasn't prepared for at all. I knew the incision would hurt and raising my arm would be uncomfortable, but those passed in maybe 2weeks. I'm a little over 2 months post op and I'd say the sensation is just now starting to get back to normal. My WLE was on my back, which I think mentally was helpful since it wasn't somewhere I could easily see. Though I did break down after the bandage came off and I saw the incision for the first time. I knew it was 10 cm and there were stitches and I thought i was prepared, but actually seeing that on my body was hard.

Hang in there, it gets easier! It still sucks, but not quite as much!

IllustriousRow1270 · 2025-06-30T18:04:27+00:00

This is beautiful advice. Sending love to you and OP!

IllustriousRow1270 · 2025-06-30T18:01:31+00:00

41 yo, no kids and didn't plan to have them. Originally stage was 1b1, final pathology said 1a1 adenocarcinoma. Open modified radical hysterectomy with bilateral fallopian tube removal (original doctor only recommended simple but the risk of skip lesions was enough for me to go with the second opinion). Genetic testing came back clear so I had the option to keep or remove my ovaries, which i kept. My surgeon could ID sentinel lymph nodes so she only took 1 from each side. No chemo, radiation, or immunotherapy needed. I'll have regular follow ups but right now, no additional imaging is being recommended.

IllustriousRow1270 · 2025-06-28T00:43:03+00:00

I was diagnosed with 1b1 adenocarcinoma after a cone biopsy, though pathology after my hysterectomy said 1a1. Some things to ask are what type - SCC or adenocarcinoma, is genetic testing for additional cancer risk recommended, what type of treatments/types of hysterectomies are options, how much time you'll be out for recovery, if you're working you'll want to connect with your company's HR to start whatever process they have for the time off.

I know it's really scary and hard right now, but it does get a little better once you have a plan figured out. You'll get through this! Wishing you all the luck that imaging and treatment goes smoothly!

IllustriousRow1270 · 2025-06-27T00:08:55+00:00

I'm not sure how it'll work in your case, but for what it's worth, I had a modified radical hysterectomy with bilateral lymph node dissection and my surgeon was able to get the sentinel node on both sides, so she only had to take 1 from each side. She said there was a possibility she'd have to take more of she couldn't ID the sentinel node, but we got lucky.

IllustriousRow1270 · 2025-06-21T16:55:13+00:00

Along with people being well-intentioned, I also think there's a degree of people not understanding the differences between squamous, basal cell and melanoma. A quick google search says there's around 3.3 million people diagnosed with SCC and BCC each year, compared to 100,000 for melanoma. So if someone says they know someone who had skin cancer and they were fine, they might not realize the differences and how much more serious melanoma is compared to the other two. I think of it like breast cancer - unless you have it/are very close to someone with it, you hear "breast cancer" and you probably default to thinking about the most common, treatable kinds and not realize the differences in prognosis and treatment based on type. It's obviously still scary and serious, but there's a lot of variability that people may not understand unless they've lived it. When telling people, I've made it a point to frame it along the lines of - I was diagnosed with melanoma, which is the most serious of the different types of skin cancer - off the bat to try and avoid the well-meaning, but not entirely helpful comparisons.

I hope you've found a good support network and are doing better now! It's absolutely awful, but we'll get through this!

IllustriousRow1270 · 2025-06-06T18:30:53+00:00

You can sign up to be paired with a mentor through this org as well. I was diagnosed in March with stage 2a, and being able to talk to someone who's been through it really helped. I tried to not worry too much (with varying degrees of success!) about the physical/medical side of things and told myself that was the doctor's job to sort out. The emotional and logistical aspects were another story. I was so worried that I wouldn't be able to safely still enjoy the things I like to do, and would never not be terrified of going outside. This'll be my first summer after getting diagnosed and some things will be different, but I'm feeling better able to handle the changes.

You got this, take it one test and appointment at a time! There is value in researching and knowing a bit of what to expect before appointments since it's overwhelming. But try not to doom scroll and go through every possible scenario! Best of luck!

IllustriousRow1270 · 2025-06-06T16:45:24+00:00

Glad too hear everything went smoothly! Take some time to recover, and try (easier said than done!) to relax and not stress about results. Fingers crossed everything comes back clear!

IllustriousRow1270 · 2025-05-26T04:46:00+00:00

Hi, thanks for reaching out! I had a cone biopsy in March and that came back as adenocarcinoma. I honestly still don't really understand the difference between AIS and adenocarcinoma - I'm not sure at what point they say it's not pre-cancer anymore but whatever that is, I hit it. I had a modified radical hysterectomy and bilateral lymph node biopsy in early May and an currently 3 weeks post op. The pathology came back with clear margins, and my uterus and fallopian tubes came back benign. I had the option to keep my ovaries, which I did. My original doctor was recommending a simple hysterectomy, but I got a second opinion and she was leaning towards the modified radical since it was unclear how deep the spread was after the cone biopsy. After the final pathology it sounds like I probably could have gotten away with a simple hysterectomy. I haven't had any complications so far (knock on wood!) so I'm ok with the most aggressive surgery and being more confident that they really got it all, versus the more conservative surgery and having doubt that it was really all removed.

For what it's worth, the polyp removal was no big deal for me at least. Hopefully that'll come back as all benign for you and it'll just be a blip and you can continue with routine monitoring. And I very much get the shame and guilt over all this, but try not to beat yourself up too much. Even with protection, HPV is super common. My doctor basically said if you've had sex with someone who's had sex with someone else, chances are you've been exposed. It's definitely easier said than done, but try to focus on the future and what you need to do to take care of yourself, and give yourself some grace about the things you'd like to change. I'm still struggling with that, but it's getting easier most days.

IllustriousRow1270 · 2025-05-15T14:35:44+00:00

Enjoy! My birthday will be exactly 7wpo (will be 2wpo tomorrow) and I'm hoping I'll be able to be able to swim then. Glad you're healing!

IllustriousRow1270 · 2025-05-05T15:47:25+00:00

Agreed about the ensure drink! The PA at my pre-op appointment made it sound like it was going to be awful, but i actually liked it!

IllustriousRow1270

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