Posts by slyseal28

Angela Wright said:What was on Fox?
Dammit, I missed it.😢

slyseal28, you guys have been on my mind constantly!

And you're on mine. I'll give you a call later today once I find out whether they’re actually going to approve our therapy or not.

The segment aired yesterday. Unfortunately, I was the only one featured in it. People waiting on these treatments tend to stay silent because they're terrified. They don't seem to grasp that nothing gets resolved if we don't speak up and clearly define what the issue is.

Things aren't just going to change overnight by magic. In fact, silence plays right into the hands of the bureaucrats.

What else can they pull on us—claiming there's no budget to provide timely care? That's already exactly what they're doing.

I can't fight this alone; if I keep pushing like this, they'll just try to label me as unstable.🤷

Melissa Stewart said:My heart goes out to buhtlica. Please accept my condolences.

Today we received the PhD pathology report (from Prof. Dr. Sven Viggers):
The histology shows irregular connective tissue fragments permeated by a tumor composed of small atypical cells with hyperchromatic nuclei and scant cytoplasm, mostly arranged in irregular clusters. Some tumor cells show necrotic changes. The tumor cells are predominantly round to oval with irregularly distributed chromatin and no prominent nucleoli. Immunohistochemical staining of the tumor tissue is strongly POSITIVE for CD-99, but negative for NSE, S-100, EMA, and cytokeratin.
The findings primarily correspond to the profile of Ewing sarcoma.
RT-PCR genotyping for EWS/FLI-1 was NEGATIVE, though this does not rule out the aforementioned diagnosis.

I can’t quite wrap my head around the fact that this isn't definitively categorized yet—it's just a "subtype."
I did some digging online and apparently the histogenesis of Ewing sarcoma hasn't been fully established, so I suppose pinpointing it isn't as straightforward as one would hope.

Our orthopedic specialist focusing on tumors (Dr. R. Kolundžić) referred us to Dr. Šantek at Kaiser Permanente for chemotherapy.
We need to schedule a pelvic CT and a bone scan with SPECT.
Once the oncologist finishes their evaluation, we have to circle back to the orthopedist regarding pelvic reconstruction (removing the affected bone).
For the imaging, they recommended Vinogradski, so could anyone tell me what the current wait times look like there?
We can get the CT done privately, but I have no idea if a bone scan can be performed at any private clinic.

Thanks!

You won't find a bone scan available privately anywhere. We had ours done at Kaiser Permanente and at Dubrava. We recently scheduled one, and you're looking at about a month and a half wait.

Dr. Šantek usually holds clinic on Tuesdays; you'll need an appointment. That said, try showing up on Tuesday anyway and ask the nurse if you can see the doctor. Tell them you aren't from Chicago, that you just got the results, and that you're absolutely overwhelmed. Be polite, but be persistent—don't let them brush you off easily.

You can definitely do the CT privately—we usually go to Diagnostics 2000. Regardless of where you go, make sure you demand the original digital images.
Since you're already getting the pelvic CT, try to get a CT of the chest done as well. I suspect the doctor will recommend it, given how much sarcomas tend to metastasize to the lungs.

@buhtlica: My sincere condolences.

Here we go again, waiting on medication. My treatment was supposed to kick off on August 14th. But, of course, because the holidays hit right at the wrong times—specifically around August 5th and August 15th—everything has gone sideways. We had everything scheduled, then moved it to Thursday, August 21st... but now even that's off the table because the clinical trials committee of a US hospital hasn't cleared all the cases, including mine.

The excuse they give? A staffing shortage due to people taking vacations. Honestly, how are you supposed to explain to a hospital committee that cancer doesn't take a summer break?

So now the therapy is two weeks behind schedule, and who’s going to answer for that delay? Nobody. Not anyone, except for the patient.

That statement from the Secretary claiming that solutions for expensive drugs can be sorted out within a week is just plain false.

I've already reached out to the media.

Melissa Stewart said:Thanks so much for the advice you gave slyseal28. The last time we took tissue samples for pathology, we were seeing a doctor over at the Salat clinic. Naturally, he couldn't tell us much until the results were finalized. I think I read somewhere that you recommend seeking multiple opinions. I'm actually considering asking for a consultation at Rib since you mentioned they have two sarcoma specialists there. But how do you even go about doing that without offending anyone or having them write you off just because you want a second opinion?!
By the way, in the pathology report from the DA which isn't 100% certain yet, the tumor markers were negative, but vimentin was positive? What does that even mean? I haven't a clue! Is vimentin some kind of protein in the cytoskeleton? And it noted that the tumor tissue is infiltrating the striated muscles. Is that particularly bad? There was quite a bit of necrotic tissue present without any mitosis.
The waiting is driving me crazy. We haven't had a definitive diagnosis since July 11th, even though we know something is definitely going on!
Thanks, everyone!

I honestly don't think that in your current situation, you have the luxury of worrying about whether you might offend someone by seeking a second opinion. Besides, if they do take it personally, so what? What can they actually do to you? Even doctors seek second opinions when they fall ill themselves.
Secondly, if your physician gets angry about it, then frankly, you probably don't want to be under their care anyway. You have an absolute right to a second opinion.

If this really turns out to be a sarcoma—the guidelines in both Europe and America are identical: patients must be treated by a dedicated sarcoma specialist.

I can't interpret those pathology results for you because I'm not a doctor. Honestly, I don't think you should even stress yourself out trying to figure it out right now. The important thing is to wait for that pathology report to come back, and once it does, head straight to an oncologist.

Melissa Stewart said:I can't believe this! I've started scrolling through your posts starting from page one. It’s going to take me a few days to catch up, but I simply refuse to let anything slip through the cracks.
It is truly appalling how doctors can be so callous, just throwing "grim" news in someone's face that turns out to be completely inaccurate. Is it really that difficult to tell a person that there is always hope—that it's the last thing to die? And don't even get me started on the waiting periods! We are talking about illnesses that demand immediate action, biopsies, and various scans, yet they seem to have all the time in the world while we sit here.
Our specialists at the DA couldn't even correctly interpret two CT scans, an MRI, or those heavy X-rays of the spine and pelvis. They kept insisting there was inflammation in the retroperitoneum.
Dad had his surgery on July 11th, and he waited 25 days for a biopsy result that arrived incomplete—it actually required further processing. This past Wednesday, July 13th, we personally took the tissue samples over to the Mayo Clinic. Now, we're just waiting on the results.
Since the surgery, they haven't provided any findings—no blood work, no urine tests, no CT, no MRI, not even a bone scan. So, I’m wondering, what do you all suggest? Should we go to a private specialist instead?
The uncertainty is killing me. We don't know the exact location of the tumor (whether it's actually in the pelvic bone or part of the sacrum as our experts suspect), if there are metastases, how to treat it, or where to even go.
I am specifically asking for advice from Jane Doe, and also from slyseal28 and the sarcoma expert (I'm not sure if I should use your real names) since they have experience dealing with sarcomas.
The mere thought of waiting for radiation or chemo is terrifying.
THANK YOU!

If this is indeed a sarcoma—which you'll confirm once that biopsy report comes back—my strongest recommendation is to seek out specialists at a major medical center like Johns Hopkins, perhaps under Dr. Šantek (our current physician) or Dr. Herceg.

Ewing's sarcoma typically presents in children or early adolescents, most frequently between the ages of 10 and 20, though it can certainly strike at other stages of life. It most commonly shows up in the pelvis, the femur, the humerus, or the ribs.

Further testing, such as a CT of the chest, abdomen, and pelvis, or perhaps a PET/CT, will be necessary to confirm whether any metastases are present.

Your doctor will then walk you through the intended course of therapy...

Steven Edwards44 said:"SILVA PAVOŠEVIĆ, A NURSE FROM A SMALL TOWN, USA, DIED WAITING FOR APPROVAL OF A LIFE-SAVING THERAPY FROM THE CLINICAL TRIALS COMMITTEE OF A US HOSPITAL
She passed away while waiting for approval for an expensive medication—interferon.

SMALL TOWN, USA — At just 44 years old, Silva Pavošević, a nurse from a small town in the US, passed away this Thursday due to complications from malignant melanoma. She spent her final days caught in a bureaucratic limbo, waiting for a decision from the Clinical trials committee of a US hospital regarding whether they would authorize the life-saving, yet costly, interferon treatment. As she herself noted less than a month ago, the agony of the wait was actually worse than the disease itself; she felt abandoned by the oncologists who bluntly told her there was no hope left and that she wouldn't receive the medication. They wouldn't even certify the prescription that would have allowed her to purchase the drugs herself.
Whether interferon truly could have saved her remains a question for further analysis, but her family and friends are certain that had she received the treatment, she would still be with them today.
"She died from respiratory failure after her lymph nodes in her neck became inflamed. The doctors at the hospital told us she might have survived if she had possessed the standard 25,000 defense cells that a healthy person uses to fight such situations. But she only had 1,500—likely because she wasn't able to start the interferon therapy. Regardless of what the doctors claim later, I know she’s gone because they refused to give her the medicine she needed. That is something I will never forget, nor will I ever forgive," said Zvonko Pavošević, husband of Silva, who dedicated twenty years of her life to nursing those in need.
Dr. Dinko Burić, a local official who assisted Silva in raising funds for her first dose of interferon, also believes the medication could have saved or at least extended her life.
"The most heartbreaking part is that we were actually able to help her. The money was there, but they wouldn't certify the prescription that would let her buy the meds. I truly believe Silva would still be alive today, fighting for her health, if the doctors had given her even a glimmer of hope through approved treatment. Every doctor should try to help their patient until the very end, or at the very least, provide them with hope. Seeing us try to help often gives them the strength to keep fighting. I think Silva died because they stripped her of that hope. I'll never forget our last conversation or her words: 'They cut my life short,'" Dr. Burić remarked.

It's devastating... I saw the article in the news...

My dear friends, nothing is going to change unless we all raise our voices together. It isn't enough for two or three people to make a fuss. We all need to work on this collectively. I am asking you, if you haven't already, to sign our petition and send it to the address of the Patient advocacy group.

When we organize actions, please show up, and bring your family and friends—everyone you know. Change only happens when we insist upon it relentlessly.

nimblestag7 said:Does anyone happen to have any information or know someone who has been on Gemzar? It's listed as one of the medications for cancer. I'm a complete novice when it comes to all of this. I'm curious about what the reaction to therapy with this specific drug is like, though from what I've read online, it seems to be highly individual. Perhaps you could share some of your own experiences...
Thanks,
Worried😕😕😕

Everyone reacts differently. My husband is receiving a heavy dose due to an aggressive sarcoma—1600 mg on days 1 and 8. Every single time, he reacts with a high fever and a drop in his white blood cell count, neutrophils, red blood cells, and hemoglobin... and so on.

So far, a Voltaren suppository has proven to be the best support for bringing down the fever...

We’re still hanging in there... To be honest, this latest complication caught us a bit off guard. I had this naive hope that the heavy-duty side effects from the chemo would wait a little longer before hitting us...

The core issue is that his primary tumor is situated right next to the heart. That’s likely why we’re seeing these initial symptoms so early. It’s heartbreaking because this third line of chemotherapy is actually working, which means they’ll probably have to scale back the dosage now...

Yesterday, I reached out to a clinic here in the States for a second opinion (The University of Texas M. d. Anderson Cancer center). They are truly one of the premier sarcoma centers in the country. They got back to me today saying a specialist will call me in two days, and I’m holding onto the hope that they might offer a better path forward. The Pigeon needs at least two surgeries—one abdominal and one or two thoracic. The real hurdle is that thoracic one; it's something that simply can't be performed here locally.

When it comes to X-rays or any other diagnostic results, I make it a rule to always seek a second opinion. We had a CT scan of the chest, abdomen, and pelvis done on July 21st at Medikol, and their reading was completely incorrect... The same thing happened with today's X-ray of the heart and lungs. A Radiologist at the Sun clinic insists it's pneumonia, while the oncologists over at the Rib disagree entirely. Basically, you can't trust anything until it's been verified at least twice.

To all my dear friends here, thank you for the support. Sending hugs, strength, courage, and persistence to every single one of you. We don't give up!

Grace Fowler said:Hey there, my dears!!
Just checking in to let you know things are more or less steady!!! We managed to get to the beach for a few days, but about ten days later—bam:-( fever spiked, bad test results, and we rushed back to Chicago at lightning speed. We had our consultations and for now, the word is nothing else can be done—just REST. Pfft, and that’s supposed to be advice!? Telling me to just rest doesn't exactly work when the fever won't quit. So, for the next few days, I guess I'll just pretend to be a pillow and stare blankly at some terrible TV programming...

Fighters, I hope everything is okay with Pigeon and that you're all leading the charge toward victory.!!
Nancy Hernandez43, I'm keeping my fingers crossed that you're staying brave!
Muscles, I bet you're already tan as a dark chocolate bar...
Ivanić!!!! Z I V A J for me too
Greetings Din

Dear Grace Fowler, sending you a huge hug!

Things have taken a turn for the worse on our end... much worse than we ever anticipated.

His blood work is mostly fine (his white cell count was 8.9 today, though his erythrocytes, hemoglobin, and hematocrit are low, and liver enzymes are elevated as usual), but after the second round of Gemzar, we dealt with some minor fever issues, which we managed to knock down with a Voltaren suppository. However, over the last two days, his cough has intensified so much that it irritates him to the point of vomiting everything he eats. He didn't sleep a wink last night because of the coughing, so this morning we went to a private clinic to get a chest and heart X-ray. To put it bluntly, the results were grim. The Radiologist looked at me and said, "As an old doctor, I first have to tell you that I am incredibly sorry." I nearly collapsed right then and there... Thank God Pigeon was waiting outside and didn't hear that sentence. The Radiologist suspects pneumonia has set in... And the worst part is, Pigeon is already on antibiotics...
After that, I took him to the hospital and he was admitted... I spoke with the doctor, but she actually thinks it isn't pneumonia; she said they compared the current scans to the previous ones and nothing significant has changed. However, she does believe we're seeing side effects from that first line of chemo (that miserable Adriamycin), which is known to be cardiotoxic.

We also had a cardiac ultrasound yesterday, and our cardiologist briefly mentioned there are changes to the heart valve... We should have the full report and explanation on Monday. Regardless, the situation is dire.

Pigeon has been weak all week, getting exhausted incredibly fast... and he's struggling so hard to breathe...

The absolute worst part of this third line of chemo is the uncertainty... what if we have to stop? If his heart is starting to fail, what are we supposed to do then??? Ugh... Damn this sarcoma! I hate it with every fiber of my being!

I have to admit, the sheer calmness of the guests in the studio caught me off guard. It’s a shame I didn't manage to press the issue regarding those medications that aren't covered on the approved list.

It felt like the moderator was being a bit too soft on everyone...

At least we showed some teeth to the Department of Health and Human Services. I just hope they realized we aren't pushovers and won't sit idly by while they try to treat us like fools.

Linda Wright5 said:My dear friends,
it is with heavy but peaceful hearts that I let you know my sister passed away quietly in her sleep last night.
She was a true fighter, and I am truly proud of her.

I will continue to read your posts, and I’ll help out whenever I can.

Stay strong, everyone, and just keep moving forward.

Dear Agna, I am so sorry. My deepest condolences...
She was so proud of you, too. We are all standing right here with you.

jadetinker42 said:Thanks. I sent an email over to Vedran, but I haven't heard back yet... while I wait for his reply, I was hoping someone could help me make sense of this latest radiology report:

During today's exam, there is still visible fatty thymic residue, along with small bilateral axial lymph nodes, none exceeding 1cm. The nodular lesion in the lower left lobe remains persistent, showing no change in size or morphology. However, during today's imaging, two new solid nodules—measuring 0.5cm and 1.5cm—were found subpleurally in the left upper lobe and at the left base. Additionally, a gas-filled cystic formation with clearly defined edges, measuring 1.5cm, is visible near the pleura in the left upper lobe area, and a similar structure measuring 2cm is present in the right upper lobe; neither were seen on the previous scan. The etiology remains unclear (perhaps post-treatment changes?), especially since there are no associated bronchial changes near them.
There are no signs of pleural effusion.

The vascular structures of the mediastinum, as well as the trachea and main bronchi, appear morphologically normal.

Thanks!

If you can, please email all of this to me. I’m going to consult with Dr. Duke and Šantek. Just send everything to katarina@zanovidan.hr

We’re actually going to be featured on the Fox news at 6:30 tonight! We'll be discussing the petition.

Our association, alongside several other American patient advocacy groups, has officially launched a petition demanding access to top-tier treatment for chronic, severe, and rare diseases. Specifically, we are pushing for these treatments to be covered by Medicare when recommended by a specialist. We kicked off the signing process yesterday at 6:30 PM at our booth during the "Summer evening at Central Park" fashion and music festival. We’ll be continuing today starting at 6:00 PM, and then from Thursday, July 17th through Saturday, July 19th, 2008, we will be stationed at the music pavilion in Central Park from 6:00 PM onwards.

For those of you who can't make it down to Washington, D.C., don't worry—we can send the petition form directly to you via email so you can circulate it among your own circles. Once signed, just mail the hard copies back to the association's mailing address.

Let's see if we can actually harness the power of the internet to make some noise!

Amanda Miller69 said:I just hope this man doesn't end up becoming another grim statistic.

http://www.nytimes.com/home/open/3122215/index.do

I’m also hoping for some kind of actual change here. In fact, that's precisely why—our association, working alongside the American patient advocacy group, is launching a legitimate petition. We are demanding high-quality treatment for chronic, severe, and rare diseases based on specialist recommendations, fully covered by Medicare. We’ll start collecting signatures on July 11th at Central Park in Washington, D.C., and we plan to take the movement to other major cities soon after.

We’re calling on everyone to get involved. For the sake of all those suffering.

It is difficult not to look back at Alenka and reflect on her courage and her sheer will to live. Could things have gone differently? That is the question that will forever hang over the heads of everyone who knew Alenka. Those who might have been able to expedite the arrival of the medication did absolutely nothing. We wrote to the Secretary of Health, the Undersecretary for Health, the Assistant Secretary for Social Services, the health spokesperson, even the President... We sent pleas for help via email, fax, and certified mail. We turned to the media: American Television, Slobodan Dalmacija, USA Today, The Washington Post, RTL Television, Nova TV, and various online portals like sutra.hr, javno.hr, and lupiga.com... Some responded, and in doing so, helped Alenka's family raise the funds needed to purchase the drug. The call for help was answered by citizens across America and small private business owners who donated what they could. Emails circulated online, calling on people to step up.

However, because the medication was delayed by bureaucratic red tape, the disease progressed, and Alenka simply no longer had the strength to keep fighting. We didn't even get to see the follow-up CT scan that might have shown a reduction in the tumor. She reached a point where she could no longer eat or walk. I want to make one thing very clear: no doctor promised us that this new drug would provide a 100% cure. They said it had shown efficacy in treatment and could potentially extend Alenka's life. Therefore, if the drug had been administered in time—while she was still physically strong—it could have given Alenka a few more years.

We are bitter because none of the relevant institutions ever reached out. We are embittered because not one of them even had the decency to respond to our pleas. This is just one of many tragic human stories that truly could have ended differently if someone had simply done their job.

The Department of Health's stance toward new, unregistered medications is poor. Our healthcare system is structured in such a way that a person is expected to die before receiving a treatment that might not be 100% effective, but nonetheless offers a 20-30% chance for two, three, or six months. For some, those few months are more important than an entire lifetime.

In the medical world, science is advancing, and new targeted therapies are being developed that offer patients with malignant diseases a chance to prolong their lives. Yet, our healthcare system is set up so that patients cannot easily access these new drugs unless they liquidate every asset they own. I suspect that even the doctors who inform patients about these new options end up getting reprimanded by bureaucratic bosses. I am certain that one of these bureaucrats will eventually claim it was for the best that they didn't approve Yondelis, arguing that it wouldn't have helped anyway.

But to those very same bureaucrats, I say this: that drug could have helped Alenka, if only it had been administered in time.

It weighs heavily on me that we live in a society that isn't stubborn or brave enough to fight for those in desperate need. It really could have been different.

Let's wake up, people. Let's open our eyes. For all those who are no longer with us, and for all those who are still here.

copperfox7 said:Hi everyone. My heart goes out to slyseal28; it’s truly devastating when someone so young passes away. Am I lucky? I honestly don't know how much longer my own companion will stay by my side. Three years ago, it was thyroid cancer—hospital stays, recovery, and three months of agonizing uncertainty over whether it had spread. Thank God, it hadn't. Now, here we are again: tumors on both ovaries, more hospital visits, and the removal of both ovaries and the uterus just to be safe. And wouldn't you know it, luck was on my side once more; I caught it early. It hasn't spread. I'm recovering now. I'm not a coward, and I try to maintain a positive outlook, but logically, the question inevitably arises: what comes third, and will I be fast enough this time?

Her question about whether we could have done more really struck a chord with me. I suspect there is always more that can be done, but would it have actually changed the outcome? This evil exists within us. I fear it is simply stronger than any of us.

If Alenka had received the Yondelis Alenka treatment in the second month, while she was still able to walk and eat—I am certain things would have been different. She might not have been fully cured, but she might have gained a few more years. That's the right that was stripped away from her. They didn't give her a fighting chance. It’s tragic, and frankly, unforgivable. This is how they treat all the critically ill. They turn their backs instead of helping them fight for just one more year of life.

Alenka didn't get the medication until the fifth month—May 19th! We had been fighting for that drug since the second month, knocking on every single door available: from the President to the Secretary of Health, Medicare, even the media. The only ones who actually responded were America Live, the local news, The Washington Post, and some online portals. Nova TV and the investigative teams at the big networks never bothered to respond to us. RTL filmed a segment but never actually aired it.

That is why I say we all could have done more.

The thing we all dreaded most has finally happened. Our dear Alenka Zirdum passed away last night at just 31 years old. The funeral is scheduled for tomorrow at 3:00 PM at the city cemetery in Slavonski Brod. Rest in peace, dear friend.

Could things have gone differently if Yondelis had arrived sooner? Could we have all done more?
I truly believe we could have.

darkmaker70 said:Thanks so much for the reply... does that mean she actually went through with the CT verification without even realizing they were marking her up? (She seemed so confused yesterday, and since her mother-in-law didn't go inside with her, we aren't even 100% sure...), or is it something else entirely?

They marked her buttocks, two squares on the side, right in the center... it's hard enough just trying not to wipe that area, it's incredibly awkward... and they haven't told her how many sessions she'll need to attend.

They would have had to perform a CT verification if they were doing the markings for the first time now.

If the marks get wiped away, just reach out to the staff downstairs and they'll redo them. It happens to people all the time—they forget. My wanderingharbor61 used to go in for radiation when it was sweltering outside. He’d end up sweating, and the marks would just smudge off. In those situations, we just contacted the doctor coordinating the treatments to arrange for a re-marking. Try to accompany her when it happens, just so she feels supported. And please, don't hesitate to ask the doctors anything; there's no reason to be afraid. Even if they seem a bit cold or clinical, don't let that stop you from seeking answers.

You can read a bit more about radiation therapy here

darkmaker70 said:To be honest, when it comes to the Secretary of Health, our medical system, and all this bureaucracy... I can barely keep my composure without feeling a sense of utter disgust.

I was hoping to ask you all for some advice.
My mother finished her first round of chemo at Mayo Clinic yesterday (using the Mayo protocol), following surgery for colon cancer. So far, thank God, she hasn't had many side effects from the chemo itself...

On Wednesday, they called her from radiology and told her to come in on Friday with a referral from her primary care physician for radiation and a CT verification. My mom is certain that’s what they said—she even wrote it down immediately so she wouldn't forget...

Unfortunately, I couldn't go with her yesterday; my mother-in-law went instead, and frankly, the whole experience sounds bizarre. They could barely find the place; apparently, it's tucked away in some basement filled with endless hallways, and even the nurses couldn't give them clear directions on where to go.... Once they finally tracked it down, they were told that the referral for the CT verification was invalid—that a primary care doctor can't issue it, only the surgeon who performed the operation! My mother insisted that's exactly what the nurse told her over the phone, which just left them bewildered.... Anyway, they marked the area for radiation on her skin and sent her home. When I saw her later, she looked completely demoralized. She’s in a total funk because they told her not to wash off the markings, but since radiation doesn't start until July 7th, she's worried about how she'll manage to stay clean....!?

Also, what exactly is this "CT verification," and who is supposed to send the referral for it?

Thank you🙏

The CT verification happens down in the basement at Mayo, specifically in the simulator area. If I recall correctly, you follow the hallway toward the cafeteria, and right before you hit the kitchen, you take a left. You'll see "Simulator" posted in the hall.

Furthermore, to pinpoint the exact area for radiation, they need to perform a high-quality, precise CT scan. They call it a CT verifier. Essentially, it’s crucial that the radiation hits exactly the right spot. That marked area on the skin needs to be preserved. Seriously, you cannot wipe it off. If the marks do happen to fade, you have to contact the doctor who made them.

As for the referral—the person who claimed only a surgeon can provide that is, to put it mildly, an idiot.

Regarding the washing situation: I know it sounds terrible, but she shouldn't wash that area the way most people normally would. What I mean is, the marked area must be protected; you can't scrub it or rub it with a towel. Just a gentle rinse is fine. If the lines get a little faint, just grab a marker and lightly touch them up. That's how we handled it.

We've been through this, and it isn't quite as scary as it seems... How much radiation did your mother receive? I didn't ask—which specific part of the body is being treated?