ASYMPTOMATIC MELANOMA

Thank you so much for your reply. I thought "unknown primary" just meant that patients had more than one lesion and they weren't sure which was the source.  She didn't have any known health issues other than having some allergies/asthma that had been flaring up and some swelling in her lower left leg that was assumedly from some back surgery she had in April. Then by the third week in May she was admitted to the hospital because she could barely breathe. They determined her lung was collapsed and blamed it on a swollen spleen that was supposedly ruptured from a trip/fall back in March and went undetected. (Looking back, this didn't really add up because she'd never been bruised in the area of the spleen.) They told her that they had tested her blood for cancer and it was negative.  They told her it was too dangerous to remove the swollen spleen, so they waited until the lung was functioning again and sent her home, telling her to rest and not do much of anything, and wait 2-3 months for the swelling of her spleen to go down.

She had follow-ups with one of the surgeons, and they discovered some lipomas had appeared in various places. He said again that this was a common occurrence when the body had suffered an traumatic injury. But a few weeks later, she had 20 tumors, some on the breasts, some in the lower back, one on the kidney, one on the lung, and a huge one under the arm.  The doctor ordered at PET scan to determine which of the tumors were or might be malignant, but insurance would not cover it.  So they had to schedule surgery to remove the tumor under her arm and biopsy it.  The surgeon didn't like the look of it and told her to make an appt at a cancer center even before the biopsy results were back.  The surgeon told her Monday morning it was lymphoma, but then the oncologist, who had consulted experts at Moffit, later that day told her it was stage 4 melanoma. 

We are all blown away. Never did we think melanoma was possible without the change in a mole or any lesion like all the literature tells us to look for.  She is still weak from the surgery and from the spleen still swollen, pressing on her stomach and lung. This has all been so confusing and heart-breaking.  Thank you for listening!

Thank you so much for the links and the reply. I guess you answered before I got my previous reply posted.  Now that you can see the details I added, does it sound more like it fits the Stage 4 label?  She will being a specialist at Moffitt ASAP.

ahhh! I talked to my sister again and realized I forgot that she fell a second time in mid-May when a kid tripped her in public.  I am going to thoroughly cover this chain of events because it is such an odd path to discovering melanoma. Sorry for not doing this before I posted my earlier reply. I am grief-stricken and not thinking so clearly.  But now that I have reviewed all the correspondence I've had with my sister, I have put together her timeline.  I know it is a lot to read through, but if anyone recognizes anything that should have been a warning sign, or even possibly that this doesn't sound like melanoma at all, I welcome all input.  If nothing else, maybe someone else will stumble on my story and learn from the mistakes.  Thank you so much for your time.

(1)  1st fall in mid March, landing hard on her left side on top of her arm, leaving no bruise near her spleen, but triggering a disk injury.

(2) In mid April, she received state-of-the-art spine surgery at the Laser Institute, drastically reducing recuperation time. Back problem greatly improved, but numbness and some swelling in the foot remained was told this could last for months.

(3) Fell again on May 12th when a careless kid caused her to stumble. The only bruise from this fall was above the left breast.  The next day, she was short of breath, had excessive burping and her feet and ankles were so swollen that she could not get shoes on. She saw a doctor who did blood work and had a chest X-ray done and diagnosed pneumonia. She said it was odd that my sister had no fever or abnormal white blood cell count, but gave her antibiotics anyway, a diuretic, a steroid inhaler and a nebulizer, and told her if she didn't feel better by Wednesday to go to the ER. 

(4) Wednesday, May 15th, she went to the local ER, where once they saw the Chest XRay they immediately admitted her. The first doctor she saw said it was Congestive Heart Failure, ovarian cancer, a blood clot in her lung or least likely, pneumonia. They ran more blood tests, did a CT scan of her chest, ultra sound on her heart and legs. They were able to rule out Congestive heart failure, lung or leg blood clots and continued to talk cancer.  Her lung was partially collapsed. There was a mass on her lungs they thought was fluid. They drained fluid out of her lungs, a procedure that had her screaming in pain for 15 minutes.  They found some blood in that fluid, which they tested and found it "not be be cancerous." They inserted a tube down her lung that would remain for days, as her lung kept filling with fluid.

They ran a CT scan of her abdominal area. The main doctor said her spleen was enlarged and needed to be removed and referred her to a surgeon. Then the surgeon said that there was a mass(scab that stopped the bleeding from an unknown injury) on the spleen that looked like it was from a fall.  On May 18th she noted that she had been told it would've been from the same fall that had prompted the back surgery. (how it went unnoticed before that back surgery, idk).  He said he did not want to operate on the spleen and that he thought it would go away if she could keep from falling for 6 months. 

By May 22nd, she was still in the hospital, another doctor "confirmed" that she apparently ruptured her spleen but did not know it, and it bled into her left lung cavity, allowing fluid to be absorbed into her left lung and partially collapsing it.  Meanwhile, she wondered how her enlarged spleen could be causing diminished breathing when she stood or walked, but not when she was sitting.  The spleen had a clot on it, but was not bleeding at that point, but apparently she was becoming anemic.  They took more chest x-rays, finally took the tube out of her lungs and on May 24th, sent her home to rest for 3 to 6 months to allow her spleen time to heal and shrink.  

(5) SInce going home, her continued to swell on her left side and be short of breath. On June 12th, she had another CT scan done and the doctor was so alarmed she asked her to go back and see the surgeon. The lung specialist also asked her to do this.  A hematoma on the enlarged spleen was pressing on her left lung, partially collapsing it again, and she continued to be short of breath. By this point, she started noticing what might have been the first signs of melanoma (not known at the time): some new cysts in the area of her kidney and her stomach, and she had been feeling nauseous since she came home. 

(6) On June 20th, my sister shared a picture of her stomach that looked like the top of a burnt loaf of bread. At a follow-up appointment, her PCP was concerned about the appearance of these new "cysts" that she could feel.  She sent my sister back to one of the surgeons, who pressed on what was called a hematoma on the stomach, causing a massive bruise as well as a second huge hematoma to pop up.

(7) On June 28th, the doctor sent her to the ER again, afraid that the huge bruise was indicative of the hematoma bleeding into her lung.  The ER determined that wasn't the case and sent her home.

(8) On June 29th my sister wrote me that she now had "tumors" that were appearing all over, including a large one under her arm.  She wrote, "Three on my left breast, 2 on my back that I can feel and more on my adrenal glands, kidneys, stomach, and right lung.  Initially the doctor guessed they were lipomas but now he is not sure because of the rapid growth.  Lipomas are hereditary (like cysts) and I read where a blunt trauma could cause them.  I also expect it could be a reaction to the dye they inject doing the tests. They have not removed a tumor yet. They did blood counts and stuff like that to rule cancer out initially at the ER. "   She continued to be so weak and have low blood oxygen; she could not even do her daughter's hair, but she kept trusting in the doctors.

(9) By July 5th, my sister had 15-30 tumors.  The doctors continued to believe they were lipomas, possibly celiac disease, but they started thinking further investigation was needed when they realized how fast they were growing.  The surgeon wanted to get her a PET scan, but the wonderful healthcare system accountant decided that it wasn't warranted and refused to cover it, so they were forced to pick a tumor to remove and sample.

(10) On July 18th, she had the tumor removed from her lymph node in the arm pit area.

(11) Friday, July 19th, the doctor's office left a late afternoon message telling my sister to make an appointment with an oncologist.

(12) She saw the surgeon Monday morning, July 22nd, and he told her it was lymphoma.  Then she saw the oncologist at "Florida Cancer Specialists" and was told it was Stage IV melanoma and has one year to live unless treatment works.

Next week she will visit Moffitt and hopefully get some clearer answers, but supposedly the oncologist did consult w/ a specialist at Moffitt before giving my sister her diagnosis.  I don't get how they can call it stage 4 without a biopsy of the other tumors, but she said they could tell from looking at the cells.  (?)

Thank you all again. This is the scariest nightmare ever.

Thank you so much for taking the time to help me. I will take all your advice and will update on here as I get more information from my sister!  I will be visiting her in a few days and going to an appointment with her.  I really appreciate your input!

Thank you, Janner. That's a great idea to make a copy of the questions. It really helps to hear from people who have been down this road before. I really appreciate your responding to me, and I will update the profile as soon as I get a chance!  I am grateful!

So I found out my sister's appointment is with Ragini Kudchadkar in the Cutaneous Oncology
department.  I looked for patient reviews, and I could only find one: "Dr. Kudchakar does not have enough experience to be in the position she is in. There is zero bedside manner and she does not answer questions, She should be in politics. For some strange reason, she put false statements in my husbands medical record. Her medical notes sound more like a highschool student writing gossip. Made up things I or my husband said. I would not trust her. Meanwhile, her entire staff talks poorly of her to the patients"    This is the one and only opinion out there, but given Moffitt's reputation, I was hoping for a more positive impression. 🙁

Oh, and I forgot to add my thanks to you, Linny, for taking the time to share your insights and give me guidance. I really appreciate it!

What would you do? Would you call and ask to change the appointment to another doctor there, even if it meant she had to wait a few more days?  Also, does anyone know if you are allowed to record the consultation just so that you can hear it again at home?  Sometimes when we are so grief-stricken, it's hard to absorb and take notes on every point.  Thanks!

Good advice! There is so much input from friends and so many treatments online, some of which I'm skeptical. My sister seems content with the doctor she will be seeing, so I will go along with it optimistically.   They have moved up her PET scan and MRI of her brain to tomorrow, and now are going to have her go straight to the hospital so they can drain her lung of fluid as well as tend to the hernia still on her spleen.  The view is that if she is still short of breath and weak from these issues, she will not be strong enough to participate in the Moffitt trials she will need. 

Thank you, will do!

So today we have learned that the cancer has spread throughout my sister's brain.  Instead of admitting her to the hospital to drain the hernia on her spleen & the fluid in her lung, they are admitting her to immediately begin steroids and radiation.  They have told her she only has months to live.  I've read that some people have survived cancer even if it is in the lymph nodes and the brain, but I'm not sure how successful treatment can be if it is not just localized in those areas, multiple tumors in a certain area of the brain vs. throughout.  Anyone have any words of encouragement? Or a dose of reality for me?  This just keeps getting harder. 🙁

So today we have learned that the cancer has spread throughout my sister's brain.  Instead of admitting her to the hospital to drain the hernia on her spleen & the fluid in her lung, they are admitting her to immediately begin steroids and radiation.  They have told her she only has months to live.  I've read that some people have survived cancer even if it is in the lymph nodes and the brain, but I'm not sure how successful treatment can be if it is not just localized in those areas, multiple tumors in a certain area of the brain vs. throughout.  Anyone have any words of encouragement? Or a dose of reality for me?  This just keeps getting harder. 🙁

So today we have learned that the cancer has spread throughout my sister's brain.  Instead of admitting her to the hospital to drain the hernia on her spleen & the fluid in her lung, they are admitting her to immediately begin steroids and radiation.  They have told her she only has months to live.  I've read that some people have survived cancer even if it is in the lymph nodes and the brain, but I'm not sure how successful treatment can be if it is not just localized in those areas, multiple tumors in a certain area of the brain vs. throughout.  Anyone have any words of encouragement? Or a dose of reality for me?  This just keeps getting harder. 🙁

They sent her back to Brandon Regional, where they initially did blood work and an EKG.  I just heard from her again, and they have decided not to admit her there, but instead are sending her by ambulance directly to Moffitt. At least I know she is in the best hands possible there, but it's hard not to worry when the impression earlier was that she was too weak to start treatment yet.  Everything has changed so fast. Thank you for the encouragement. <3

I will text my sister and her husband and advise them to ask about this, thank you!

The doctor that told her that she had "months to live" was a PA at "Florida Cancer" (Specialists/Center).  It angered me that she would be so pessimistic instead of encouraging my sister to have hope and be strong.  My sister just said that she thinks that they are waiting on the results of a BRAF test.  Thanks again for the support!

Update: the reason she was taken immediately to Moffitt is because she has a tumor at the base of her skull that apparently will kill her if it grows much larger, cutting off some vital functions (the specifics I'm not sure of, but this is Moffitt diagnosing her at this point, so I believe it's accurate).  So they are going to get her on steroids ASAP which will shrink it enough to put her out of danger and then they will move forward with some treatment from there. 

Despite the urgent need to receive the steroids to stop the life-threatening tumor from growing, my sister has been stuck at Brandon Regional Hospital for SIX HOURS waiting for an ambulance!! If her husband drives her to Moffitt, their insurance will not pay the claims.  WHAT IS WRONG WITH OUR HEALTHCARE SYSTEM?

They apparently did start her on steroids at Brandon, and she is FINALLY en route to Moffitt. I would not have been so patient as my brother-in-law.  I think everyone is so stressed, we're not thinking straight.  Now her daughter tells me that my sister may be in ICU for several days, so I don't know if I'm even going to be allowed to see her when I travel this weekend. … …  Thanks again for letting me vent my concerns here.  Until I can be with her, you guys are my best source for answering, "WHAT THE H*LL IS GOING ON?" Thanks for being there.

Yes, I was planning to visit for a week just to help out and ease the burden her husband has been bearing.  She has 2 grown children but also a 14-year-old daughter with special needs.  It just sounds as though she may want me with her in the hosp the majority of the time keeping her company, but I will certainly do everything I can to help her and her family.

Thanks for the tip about the odd timing of the docs you need to talk to.  We will have to work out a one-man-on-duty at all times approach!   I just can't wait to be with her again. Hopefully we can share some laughs and blanket some of the overwhelming grief that we all feel.  Again, you all have been such a comfort to me these last few days, thank you!

ahhh! I talked to my sister again and realized I forgot that she fell a second time in mid-May when a kid tripped her in public.  I am going to thoroughly cover this chain of events because it is such an odd path to discovering melanoma. Sorry for not doing this before I posted my earlier reply. I am grief-stricken and not thinking so clearly.  But now that I have reviewed all the correspondence I've had with my sister, I have put together her timeline.  I know it is a lot to read through, but if anyone recognizes anything that should have been a warning sign, or even possibly that this doesn't sound like melanoma at all, I welcome all input.  If nothing else, maybe someone else will stumble on my story and learn from the mistakes.  Thank you so much for your time.

(1)  1st fall in mid March, landing hard on her left side on top of her arm, leaving no bruise near her spleen, but triggering a disk injury.

(2) In mid April, she received state-of-the-art spine surgery at the Laser Institute, drastically reducing recuperation time. Back problem greatly improved, but numbness and some swelling in the foot remained was told this could last for months.

(3) Fell again on May 12th when a careless kid caused her to stumble. The only bruise from this fall was above the left breast.  The next day, she was short of breath, had excessive burping and her feet and ankles were so swollen that she could not get shoes on. She saw a doctor who did blood work and had a chest X-ray done and diagnosed pneumonia. She said it was odd that my sister had no fever or abnormal white blood cell count, but gave her antibiotics anyway, a diuretic, a steroid inhaler and a nebulizer, and told her if she didn't feel better by Wednesday to go to the ER. 

(4) Wednesday, May 15th, she went to the local ER, where once they saw the Chest XRay they immediately admitted her. The first doctor she saw said it was Congestive Heart Failure, ovarian cancer, a blood clot in her lung or least likely, pneumonia. They ran more blood tests, did a CT scan of her chest, ultra sound on her heart and legs. They were able to rule out Congestive heart failure, lung or leg blood clots and continued to talk cancer.  Her lung was partially collapsed. There was a mass on her lungs they thought was fluid. They drained fluid out of her lungs, a procedure that had her screaming in pain for 15 minutes.  They found some blood in that fluid, which they tested and found it "not be be cancerous." They inserted a tube down her lung that would remain for days, as her lung kept filling with fluid.

They ran a CT scan of her abdominal area. The main doctor said her spleen was enlarged and needed to be removed and referred her to a surgeon. Then the surgeon said that there was a mass(scab that stopped the bleeding from an unknown injury) on the spleen that looked like it was from a fall.  On May 18th she noted that she had been told it would've been from the same fall that had prompted the back surgery. (how it went unnoticed before that back surgery, idk).  He said he did not want to operate on the spleen and that he thought it would go away if she could keep from falling for 6 months. 

By May 22nd, she was still in the hospital, another doctor "confirmed" that she apparently ruptured her spleen but did not know it, and it bled into her left lung cavity, allowing fluid to be absorbed into her left lung and partially collapsing it.  Meanwhile, she wondered how her enlarged spleen could be causing diminished breathing when she stood or walked, but not when she was sitting.  The spleen had a clot on it, but was not bleeding at that point, but apparently she was becoming anemic.  They took more chest x-rays, finally took the tube out of her lungs and on May 24th, sent her home to rest for 3 to 6 months to allow her spleen time to heal and shrink.  

(5) SInce going home, her continued to swell on her left side and be short of breath. On June 12th, she had another CT scan done and the doctor was so alarmed she asked her to go back and see the surgeon. The lung specialist also asked her to do this.  A hematoma on the enlarged spleen was pressing on her left lung, partially collapsing it again, and she continued to be short of breath. By this point, she started noticing what might have been the first signs of melanoma (not known at the time): some new cysts in the area of her kidney and her stomach, and she had been feeling nauseous since she came home. 

(6) On June 20th, my sister shared a picture of her stomach that looked like the top of a burnt loaf of bread. At a follow-up appointment, her PCP was concerned about the appearance of these new "cysts" that she could feel.  She sent my sister back to one of the surgeons, who pressed on what was called a hematoma on the stomach, causing a massive bruise as well as a second huge hematoma to pop up.

(7) On June 28th, the doctor sent her to the ER again, afraid that the huge bruise was indicative of the hematoma bleeding into her lung.  The ER determined that wasn't the case and sent her home.

(8) On June 29th my sister wrote me that she now had "tumors" that were appearing all over, including a large one under her arm.  She wrote, "Three on my left breast, 2 on my back that I can feel and more on my adrenal glands, kidneys, stomach, and right lung.  Initially the doctor guessed they were lipomas but now he is not sure because of the rapid growth.  Lipomas are hereditary (like cysts) and I read where a blunt trauma could cause them.  I also expect it could be a reaction to the dye they inject doing the tests. They have not removed a tumor yet. They did blood counts and stuff like that to rule cancer out initially at the ER. "   She continued to be so weak and have low blood oxygen; she could not even do her daughter's hair, but she kept trusting in the doctors.

(9) By July 5th, my sister had 15-30 tumors.  The doctors continued to believe they were lipomas, possibly celiac disease, but they started thinking further investigation was needed when they realized how fast they were growing.  The surgeon wanted to get her a PET scan, but the wonderful healthcare system accountant decided that it wasn't warranted and refused to cover it, so they were forced to pick a tumor to remove and sample.

(10) On July 18th, she had the tumor removed from her lymph node in the arm pit area.

(11) Friday, July 19th, the doctor's office left a late afternoon message telling my sister to make an appointment with an oncologist.

(12) She saw the surgeon Monday morning, July 22nd, and he told her it was lymphoma.  Then she saw the oncologist at "Florida Cancer Specialists" and was told it was Stage IV melanoma and has one year to live unless treatment works.

Next week she will visit Moffitt and hopefully get some clearer answers, but supposedly the oncologist did consult w/ a specialist at Moffitt before giving my sister her diagnosis.  I don't get how they can call it stage 4 without a biopsy of the other tumors, but she said they could tell from looking at the cells.  (?)

Thank you all again. This is the scariest nightmare ever.

ahhh! I talked to my sister again and realized I forgot that she fell a second time in mid-May when a kid tripped her in public.  I am going to thoroughly cover this chain of events because it is such an odd path to discovering melanoma. Sorry for not doing this before I posted my earlier reply. I am grief-stricken and not thinking so clearly.  But now that I have reviewed all the correspondence I've had with my sister, I have put together her timeline.  I know it is a lot to read through, but if anyone recognizes anything that should have been a warning sign, or even possibly that this doesn't sound like melanoma at all, I welcome all input.  If nothing else, maybe someone else will stumble on my story and learn from the mistakes.  Thank you so much for your time.

(1)  1st fall in mid March, landing hard on her left side on top of her arm, leaving no bruise near her spleen, but triggering a disk injury.

(2) In mid April, she received state-of-the-art spine surgery at the Laser Institute, drastically reducing recuperation time. Back problem greatly improved, but numbness and some swelling in the foot remained was told this could last for months.

(3) Fell again on May 12th when a careless kid caused her to stumble. The only bruise from this fall was above the left breast.  The next day, she was short of breath, had excessive burping and her feet and ankles were so swollen that she could not get shoes on. She saw a doctor who did blood work and had a chest X-ray done and diagnosed pneumonia. She said it was odd that my sister had no fever or abnormal white blood cell count, but gave her antibiotics anyway, a diuretic, a steroid inhaler and a nebulizer, and told her if she didn't feel better by Wednesday to go to the ER. 

(4) Wednesday, May 15th, she went to the local ER, where once they saw the Chest XRay they immediately admitted her. The first doctor she saw said it was Congestive Heart Failure, ovarian cancer, a blood clot in her lung or least likely, pneumonia. They ran more blood tests, did a CT scan of her chest, ultra sound on her heart and legs. They were able to rule out Congestive heart failure, lung or leg blood clots and continued to talk cancer.  Her lung was partially collapsed. There was a mass on her lungs they thought was fluid. They drained fluid out of her lungs, a procedure that had her screaming in pain for 15 minutes.  They found some blood in that fluid, which they tested and found it "not be be cancerous." They inserted a tube down her lung that would remain for days, as her lung kept filling with fluid.

They ran a CT scan of her abdominal area. The main doctor said her spleen was enlarged and needed to be removed and referred her to a surgeon. Then the surgeon said that there was a mass(scab that stopped the bleeding from an unknown injury) on the spleen that looked like it was from a fall.  On May 18th she noted that she had been told it would've been from the same fall that had prompted the back surgery. (how it went unnoticed before that back surgery, idk).  He said he did not want to operate on the spleen and that he thought it would go away if she could keep from falling for 6 months. 

By May 22nd, she was still in the hospital, another doctor "confirmed" that she apparently ruptured her spleen but did not know it, and it bled into her left lung cavity, allowing fluid to be absorbed into her left lung and partially collapsing it.  Meanwhile, she wondered how her enlarged spleen could be causing diminished breathing when she stood or walked, but not when she was sitting.  The spleen had a clot on it, but was not bleeding at that point, but apparently she was becoming anemic.  They took more chest x-rays, finally took the tube out of her lungs and on May 24th, sent her home to rest for 3 to 6 months to allow her spleen time to heal and shrink.  

(5) SInce going home, her continued to swell on her left side and be short of breath. On June 12th, she had another CT scan done and the doctor was so alarmed she asked her to go back and see the surgeon. The lung specialist also asked her to do this.  A hematoma on the enlarged spleen was pressing on her left lung, partially collapsing it again, and she continued to be short of breath. By this point, she started noticing what might have been the first signs of melanoma (not known at the time): some new cysts in the area of her kidney and her stomach, and she had been feeling nauseous since she came home. 

(6) On June 20th, my sister shared a picture of her stomach that looked like the top of a burnt loaf of bread. At a follow-up appointment, her PCP was concerned about the appearance of these new "cysts" that she could feel.  She sent my sister back to one of the surgeons, who pressed on what was called a hematoma on the stomach, causing a massive bruise as well as a second huge hematoma to pop up.

(7) On June 28th, the doctor sent her to the ER again, afraid that the huge bruise was indicative of the hematoma bleeding into her lung.  The ER determined that wasn't the case and sent her home.

(8) On June 29th my sister wrote me that she now had "tumors" that were appearing all over, including a large one under her arm.  She wrote, "Three on my left breast, 2 on my back that I can feel and more on my adrenal glands, kidneys, stomach, and right lung.  Initially the doctor guessed they were lipomas but now he is not sure because of the rapid growth.  Lipomas are hereditary (like cysts) and I read where a blunt trauma could cause them.  I also expect it could be a reaction to the dye they inject doing the tests. They have not removed a tumor yet. They did blood counts and stuff like that to rule cancer out initially at the ER. "   She continued to be so weak and have low blood oxygen; she could not even do her daughter's hair, but she kept trusting in the doctors.

(9) By July 5th, my sister had 15-30 tumors.  The doctors continued to believe they were lipomas, possibly celiac disease, but they started thinking further investigation was needed when they realized how fast they were growing.  The surgeon wanted to get her a PET scan, but the wonderful healthcare system accountant decided that it wasn't warranted and refused to cover it, so they were forced to pick a tumor to remove and sample.

(10) On July 18th, she had the tumor removed from her lymph node in the arm pit area.

(11) Friday, July 19th, the doctor's office left a late afternoon message telling my sister to make an appointment with an oncologist.

(12) She saw the surgeon Monday morning, July 22nd, and he told her it was lymphoma.  Then she saw the oncologist at "Florida Cancer Specialists" and was told it was Stage IV melanoma and has one year to live unless treatment works.

Next week she will visit Moffitt and hopefully get some clearer answers, but supposedly the oncologist did consult w/ a specialist at Moffitt before giving my sister her diagnosis.  I don't get how they can call it stage 4 without a biopsy of the other tumors, but she said they could tell from looking at the cells.  (?)

Thank you all again. This is the scariest nightmare ever.

Oh, and I forgot to add my thanks to you, Linny, for taking the time to share your insights and give me guidance. I really appreciate it!

Oh, and I forgot to add my thanks to you, Linny, for taking the time to share your insights and give me guidance. I really appreciate it!

What would you do? Would you call and ask to change the appointment to another doctor there, even if it meant she had to wait a few more days?  Also, does anyone know if you are allowed to record the consultation just so that you can hear it again at home?  Sometimes when we are so grief-stricken, it's hard to absorb and take notes on every point.  Thanks!

What would you do? Would you call and ask to change the appointment to another doctor there, even if it meant she had to wait a few more days?  Also, does anyone know if you are allowed to record the consultation just so that you can hear it again at home?  Sometimes when we are so grief-stricken, it's hard to absorb and take notes on every point.  Thanks!

Thank you, will do!

Thank you, will do!

They sent her back to Brandon Regional, where they initially did blood work and an EKG.  I just heard from her again, and they have decided not to admit her there, but instead are sending her by ambulance directly to Moffitt. At least I know she is in the best hands possible there, but it's hard not to worry when the impression earlier was that she was too weak to start treatment yet.  Everything has changed so fast. Thank you for the encouragement. <3

They sent her back to Brandon Regional, where they initially did blood work and an EKG.  I just heard from her again, and they have decided not to admit her there, but instead are sending her by ambulance directly to Moffitt. At least I know she is in the best hands possible there, but it's hard not to worry when the impression earlier was that she was too weak to start treatment yet.  Everything has changed so fast. Thank you for the encouragement. <3

I will text my sister and her husband and advise them to ask about this, thank you!

I will text my sister and her husband and advise them to ask about this, thank you!

Just found out my sister is BRAF+ so I guess that is a good thing. They will be able to try drug therapy.  She is currently due to have 5 more doses of brain radiation before she was supposed to start chemo. I don't know if patients normally can get chemo or some form of radiation along with the drug treatment or not.

Just found out my sister is BRAF+ so I guess that is a good thing. They will be able to try drug therapy.  She is currently due to have 5 more doses of brain radiation before she was supposed to start chemo. I don't know if patients normally can get chemo or some form of radiation along with the drug treatment or not.

Just found out my sister is BRAF+ so I guess that is a good thing. They will be able to try drug therapy.  She is currently due to have 5 more doses of brain radiation before she was supposed to start chemo. I don't know if patients normally can get chemo or some form of radiation along with the drug treatment or not.

The doctor that told her that she had "months to live" was a PA at "Florida Cancer" (Specialists/Center).  It angered me that she would be so pessimistic instead of encouraging my sister to have hope and be strong.  My sister just said that she thinks that they are waiting on the results of a BRAF test.  Thanks again for the support!

The doctor that told her that she had "months to live" was a PA at "Florida Cancer" (Specialists/Center).  It angered me that she would be so pessimistic instead of encouraging my sister to have hope and be strong.  My sister just said that she thinks that they are waiting on the results of a BRAF test.  Thanks again for the support!

Update: the reason she was taken immediately to Moffitt is because she has a tumor at the base of her skull that apparently will kill her if it grows much larger, cutting off some vital functions (the specifics I'm not sure of, but this is Moffitt diagnosing her at this point, so I believe it's accurate).  So they are going to get her on steroids ASAP which will shrink it enough to put her out of danger and then they will move forward with some treatment from there. 

Update: the reason she was taken immediately to Moffitt is because she has a tumor at the base of her skull that apparently will kill her if it grows much larger, cutting off some vital functions (the specifics I'm not sure of, but this is Moffitt diagnosing her at this point, so I believe it's accurate).  So they are going to get her on steroids ASAP which will shrink it enough to put her out of danger and then they will move forward with some treatment from there. 

Despite the urgent need to receive the steroids to stop the life-threatening tumor from growing, my sister has been stuck at Brandon Regional Hospital for SIX HOURS waiting for an ambulance!! If her husband drives her to Moffitt, their insurance will not pay the claims.  WHAT IS WRONG WITH OUR HEALTHCARE SYSTEM?

Despite the urgent need to receive the steroids to stop the life-threatening tumor from growing, my sister has been stuck at Brandon Regional Hospital for SIX HOURS waiting for an ambulance!! If her husband drives her to Moffitt, their insurance will not pay the claims.  WHAT IS WRONG WITH OUR HEALTHCARE SYSTEM?

They apparently did start her on steroids at Brandon, and she is FINALLY en route to Moffitt. I would not have been so patient as my brother-in-law.  I think everyone is so stressed, we're not thinking straight.  Now her daughter tells me that my sister may be in ICU for several days, so I don't know if I'm even going to be allowed to see her when I travel this weekend. … …  Thanks again for letting me vent my concerns here.  Until I can be with her, you guys are my best source for answering, "WHAT THE H*LL IS GOING ON?" Thanks for being there.

They apparently did start her on steroids at Brandon, and she is FINALLY en route to Moffitt. I would not have been so patient as my brother-in-law.  I think everyone is so stressed, we're not thinking straight.  Now her daughter tells me that my sister may be in ICU for several days, so I don't know if I'm even going to be allowed to see her when I travel this weekend. … …  Thanks again for letting me vent my concerns here.  Until I can be with her, you guys are my best source for answering, "WHAT THE H*LL IS GOING ON?" Thanks for being there.

My sister was sent home after 3 days of brain radiation.  Though she was feeling the slightest bit of relief as her started to shrink, she was never able to get near enough fluids or food down to sustain herself.  She was taken by paramedics on Sunday, the day after I had to leave her, to Tampa General because Moffitt doesn't have an ER, and she was short of breath, vomiting,103 degree fever, high blood pressure, and intense abdominal pain.  They started her on antibiotics but then stopped them. Perhaps she was severely dehydrated?

At this point, she is a sitting duck or sorts. She has missed 4 out of 5 of her brain radiation treatments. Moffitt has no open bed for her, and she is not strong enough to go home, yet due to red tape, she can't be checked out of TGH and taken for her treatment, and apparently they can't do the radiation at TGA.  After being told how paramount it was to get the brain under control so that she didn't die from the tumor at the base of her skull, I don't understand how they can let my sister go without the radiation.  She is still on steroids, which continue to exacerbate her stomach pain.  She was originally supposed to start chemo next week for all the METs in her body, but I'm not sure of the status of that given she was told she was going to be put on Zelboraf, and given that she didn't get to complete the brain radiation.  (She also missed her consultation with her oncologist to discuss her treatment.)  We are all very discouraged that she cannot seem to get access to the treatment she so desperately needs.

My sister was sent home after 3 days of brain radiation.  Though she was feeling the slightest bit of relief as her started to shrink, she was never able to get near enough fluids or food down to sustain herself.  She was taken by paramedics on Sunday, the day after I had to leave her, to Tampa General because Moffitt doesn't have an ER, and she was short of breath, vomiting,103 degree fever, high blood pressure, and intense abdominal pain.  They started her on antibiotics but then stopped them. Perhaps she was severely dehydrated?

At this point, she is a sitting duck or sorts. She has missed 4 out of 5 of her brain radiation treatments. Moffitt has no open bed for her, and she is not strong enough to go home, yet due to red tape, she can't be checked out of TGH and taken for her treatment, and apparently they can't do the radiation at TGA.  After being told how paramount it was to get the brain under control so that she didn't die from the tumor at the base of her skull, I don't understand how they can let my sister go without the radiation.  She is still on steroids, which continue to exacerbate her stomach pain.  She was originally supposed to start chemo next week for all the METs in her body, but I'm not sure of the status of that given she was told she was going to be put on Zelboraf, and given that she didn't get to complete the brain radiation.  (She also missed her consultation with her oncologist to discuss her treatment.)  We are all very discouraged that she cannot seem to get access to the treatment she so desperately needs.

My sister was sent home after 3 days of brain radiation.  Though she was feeling the slightest bit of relief as her started to shrink, she was never able to get near enough fluids or food down to sustain herself.  She was taken by paramedics on Sunday, the day after I had to leave her, to Tampa General because Moffitt doesn't have an ER, and she was short of breath, vomiting,103 degree fever, high blood pressure, and intense abdominal pain.  They started her on antibiotics but then stopped them. Perhaps she was severely dehydrated?

At this point, she is a sitting duck or sorts. She has missed 4 out of 5 of her brain radiation treatments. Moffitt has no open bed for her, and she is not strong enough to go home, yet due to red tape, she can't be checked out of TGH and taken for her treatment, and apparently they can't do the radiation at TGA.  After being told how paramount it was to get the brain under control so that she didn't die from the tumor at the base of her skull, I don't understand how they can let my sister go without the radiation.  She is still on steroids, which continue to exacerbate her stomach pain.  She was originally supposed to start chemo next week for all the METs in her body, but I'm not sure of the status of that given she was told she was going to be put on Zelboraf, and given that she didn't get to complete the brain radiation.  (She also missed her consultation with her oncologist to discuss her treatment.)  We are all very discouraged that she cannot seem to get access to the treatment she so desperately needs.

Yes, I was planning to visit for a week just to help out and ease the burden her husband has been bearing.  She has 2 grown children but also a 14-year-old daughter with special needs.  It just sounds as though she may want me with her in the hosp the majority of the time keeping her company, but I will certainly do everything I can to help her and her family.

Thanks for the tip about the odd timing of the docs you need to talk to.  We will have to work out a one-man-on-duty at all times approach!   I just can't wait to be with her again. Hopefully we can share some laughs and blanket some of the overwhelming grief that we all feel.  Again, you all have been such a comfort to me these last few days, thank you!

Yes, I was planning to visit for a week just to help out and ease the burden her husband has been bearing.  She has 2 grown children but also a 14-year-old daughter with special needs.  It just sounds as though she may want me with her in the hosp the majority of the time keeping her company, but I will certainly do everything I can to help her and her family.

Thanks for the tip about the odd timing of the docs you need to talk to.  We will have to work out a one-man-on-duty at all times approach!   I just can't wait to be with her again. Hopefully we can share some laughs and blanket some of the overwhelming grief that we all feel.  Again, you all have been such a comfort to me these last few days, thank you!

I was dropped off at Moffitt as soon as we arrived in Tampa.  I want to update you all on my sister: Monday morning she had a procedure done on her spleen where they were able to go through an artery with a camera, locate the source of bleeding, and inject particulate matter to clot the area and finally stop the bleeding. It will take several weeks for the fluid to be absorbed in the body and for the swelling to go down and take the pressure off her lung so she can breathe well again. They started radiation on her brain which will continue until the end of next week. She will be on oxygen until her breathing capacity is stronger. She will get vaccinated against influenza, meningits, HIB, and pneumonia within the next 2 weeks, and will start chemo for the tumors in her body as soon as the brain radiation is complete.  She is expected to go home today, and I am hoping that she will be able to drink enough fluid and tolerate enough food to stay nourished and strong. There is so much pressure from the spleen, it is interfering with her eating/drinking, giving her a lot of discomfort and gas with the smallest bits of food and drink. 

Moffitt wasted no time and has been aggressive in her treatment, for which we are all grateful.  You all were right, they know what they're doing here.

Thanks again for your support!

I was dropped off at Moffitt as soon as we arrived in Tampa.  I want to update you all on my sister: Monday morning she had a procedure done on her spleen where they were able to go through an artery with a camera, locate the source of bleeding, and inject particulate matter to clot the area and finally stop the bleeding. It will take several weeks for the fluid to be absorbed in the body and for the swelling to go down and take the pressure off her lung so she can breathe well again. They started radiation on her brain which will continue until the end of next week. She will be on oxygen until her breathing capacity is stronger. She will get vaccinated against influenza, meningits, HIB, and pneumonia within the next 2 weeks, and will start chemo for the tumors in her body as soon as the brain radiation is complete.  She is expected to go home today, and I am hoping that she will be able to drink enough fluid and tolerate enough food to stay nourished and strong. There is so much pressure from the spleen, it is interfering with her eating/drinking, giving her a lot of discomfort and gas with the smallest bits of food and drink. 

Moffitt wasted no time and has been aggressive in her treatment, for which we are all grateful.  You all were right, they know what they're doing here.

Thanks again for your support!

I was dropped off at Moffitt as soon as we arrived in Tampa.  I want to update you all on my sister: Monday morning she had a procedure done on her spleen where they were able to go through an artery with a camera, locate the source of bleeding, and inject particulate matter to clot the area and finally stop the bleeding. It will take several weeks for the fluid to be absorbed in the body and for the swelling to go down and take the pressure off her lung so she can breathe well again. They started radiation on her brain which will continue until the end of next week. She will be on oxygen until her breathing capacity is stronger. She will get vaccinated against influenza, meningits, HIB, and pneumonia within the next 2 weeks, and will start chemo for the tumors in her body as soon as the brain radiation is complete.  She is expected to go home today, and I am hoping that she will be able to drink enough fluid and tolerate enough food to stay nourished and strong. There is so much pressure from the spleen, it is interfering with her eating/drinking, giving her a lot of discomfort and gas with the smallest bits of food and drink. 

Moffitt wasted no time and has been aggressive in her treatment, for which we are all grateful.  You all were right, they know what they're doing here.

Thanks again for your support!