Help! Even the doctors don't know...

[jme]

PLease let me know if anyone has gone through this. We are so confused and nobody seems to be able to give us any answers!! We're just at the beginning of this and some days I don't know how much more I can take.

It all started back in March. Jeff had not been feeling well for a while; bad enough, in fact, that he quit smoking. He began coughing up blood and having night sweats. A few days later, he went to see the doctor, had a chest x-ray, and was admitted to the hospital with pneumonia and possible TB. There he stayed in respiratory isolation for 5 days until the CDC ruled out TB and the doctors found antibiotics that decreased his pneumonia symptoms. He came home with instructions to see our family doctor and his pulmonary doctor within a few weeks.

He initially felt better and then the night sweats returned, along with extreme fatigue and neck and facial swelling. Then he began losing consciousness and falling down sometimes when he coughed. The pulmonary doctor scheduled a CT scan for a Friday and a follow up appointment with him for Monday, April 10th.

By Monday, the swelling was worse. It looked to us like an allergic reaction. The doctor saw the CT scans and there were 2 large masses, one of which was pressing on his superior vena cava and his bronchial artery. He scheduled an outpatient bronchoscopy for Wednesday, April 12th. We shared with him that the “passing out” thing was happening up to 5 times a day at this point and did not always accompany coughing anymore.

On April 12th, when Jeff was on the table about to get anesthesia, he had another episode. He does shake and his eyes roll back in his head, so the doctor began calling these episodes seizures. They did the procedure and admitted him to the hospital. They found malignancy in the 8x5x8 cm mass that was shown on the CT scan, but could not identify the type of cancer. By this time the swelling has spread to his entire face, neck, chest, abdomen, back, and both arms. He had an MRI on the 13th and it was clear, so the doctors say that the passing out is due to Superior Vena Cava Syndrome (SVCS), which means that the mass is prohibiting the normal blood and oxygen flow between the brain and heart. His oncologist wanted to do a more invasive biopsy, but the surgeon was not comfortable with that due to the swelling and large masses. So, they did a small needle biopsy of the area around his right lung and began radiation on April 14th. This biopsy was also inconclusive, but the surgeon, pathologist, and oncologist all “think” it is small cell lung cancer because of the SVCS and other side effects. He continued radiation through the 16th and had scans of bone, brain, liver, and bladder. All were cancer free.

On April 18th, the swelling became even worse and the doctors started Jeff on Heparin, (correctly) thinking that some of the swelling was caused by blood clots. He resumed radiation on the 19th and had another biopsy on the 20th. He also had anther CT scan and Chest ultrasound. Even though they removed an entire lymph node during this biopsy, they still had the same problems with pathology. They found cancer, but could not tell which kind. On April 24th, the swelling was decreasing and he had a thoracentisis done to drain 2 liters of fluid from the sac surrounding his right lung. An x-ray showed that the mass pressing on his SVC was smaller, so they moved the radiation to his lungs. During this time, samples from the 3 biopsies had been sent to Walter Reid Clinic, Wexler Clinic, and John Hopkins.

When the results from the biopsies that were sent out came back, the news was the same. Its cancer, but nobody knows what kind. Because of this, our oncologist did not want to start him on chemotherapy just in case he was wrong and it wasn’t SCLC. Other possibilities were (are) lymphatic cancer, non-small cell lung cancer, or metastatic testicular cancer, all of which tested negative. So, he was sent to Moffitt Cancer Research Institute in Tampa on April 29th for a second opinion and to hopefully begin treatment. On May 2nd, the doctors at Moffitt did a new Chest CT and an Endoscopy (biopsy where they go through the nose and into the lungs) on May 3rd. The Endoscopy had the same results as the other 3 biopsies. The new CT scan, however, revealed metastatic lesions in the left lung that were not seen before and “numerous metastatic tumors in the intraperitoneal cavity” that, in retrospect, could be seen on the previous scan. The doctors did not catch them before because they were so small. In the 2 weeks between scans, they were much larger.

On May 5th, I went and picked him up from Moffitt. We all had a nice quiet weekend at home and then on Monday, May 8th, he woke up at 3:00 a.m. unable to breathe. We went to the ER where he was readmitted and put back on oxygen. He had been on it for weeks, but the doctors at Moffitt sent him home without any. He resumed radiation therapy here at our local hospital and was well enough to come home again on Saturday, May 13th, with oxygen, of course. During this week, we also found 3 "lumps" on his back, under the skin. Our oncologist did not biopsy them, but thought they were also metastatic tumors. By the end of the week, we found several more of these lumps on his back.

By this time, our oncologist was beside himself. He was disappointed with Moffitt’s care and lack of results. He made the decision to start Jeff on Chemotherapy for SCLC. He still thinks that all signs are pointing to SCLC and did not think that Jeff could afford to wait another minute for the next step in his treatment. He will be getting Taxol and Carboplatinum every 3 weeks. After the first 2 treatments, they should be able to tell whether it’s working or not. If so, he will continue for several doses, if not, they will change his meds and try something else. The plan was for a PIC line to be put in on May 16th after his daily radiation, as an outpatient procedure. The PIC line would be how the chemo is administered.

The PIC line wouldn’t go in. The SVCS and blood clots are now blocking the SVC so thoroughly that there is no blood flow there at all and the blood from heart to brain and back is getting there through collateral veins only. He was readmitted to the hospital on May 16th, hoping to just do a surgical PIC line with the CT scan to assist in placement. They tried 3 times; it still didn’t work. The oncologist wanted to put in a port, but the surgeon said no because they will still have the same problems with the compromised blood flow and all. It was too dangerous to cut into his chest at all. Basically, the veins and arteries in his upper body are useless right now, so they decided to put a Triple Lumen Cathedar in his femoral artery. By this time, Jeff was very weak again and unable to eat most things. His weight was down to 112 pounds, with at least 10 pounds of that still being fluid in his upper body and arms from the SVCS. He was about 2 pounds from having to get a feeding tube put in his belly.

On Friday, May 19th, Jeff had his first chemo treatment. His spirits were good, he was eating a little bit and regaining strength, and he got to come home on Saturday. He was still on oxygen, of course, but he was well enough to go out to breakfast on Sunday morning. Tuesday, May 23rd and Jeff wasn't doing so well. He was unable to eat again, unable to even drink a sip of water to take his medications. He’s still doing daily radiation and it’s all catching up with him. I took him back to the hospital that afternoon. Jeff and his doctors all feel that it is better that he is there right now, under constant medical supervision.

My question is...WHY CAN'T THEY TELL US EXACLTY WHAT THIS IS?? Our family doctor has never seen anything like this before and our oncologist says that he has, but it's rare.

We had our 10 year anniversary this week...in the hospital. I asked our kids (2 boys, 13 and 6) how they are doing right now with dad in and out of the hopstial and so sick he can't play with them right now. You know what they responded? "It's okay, mom. We're getting used to it." Well, I'm not getting used to it. Sadly, I'm just getting angry.

[Ry]

Wow. I am so sorry you are not able to get a definite answer on what type of cancer your husband has. Hopefully the carbo taxol will start working on it whatever it is. My husband has SVCS and his vein is also completely blocked. He has his port on the other side of the chest. I hope you get some answers soon and he starts to feel better.

Rochelle

[EastCoastLadi]

I am so sorry about all your husband has gone through. My husband has extensive sclc and I can tell you that w/ sc it moves very quickly, but if it is and he is on chemo, sc does respond well to chemo, I don't know what his schedule of treatment is, my husband's first 6 rounds were 3 days every 3 weeks of cisplastin and etopiside and after 2 rounds the cat showed reductions in his lung and liver tumors. I know you must be extremely frustrated w/ the not knowing exactly, I know that sometimes there can be large and small cells together, but i don't know how common or uncommon that is.

I also have 2 young children ( girls 8 and 11 ) and they're now use to seeing daddy very tired and not feeling well. My prayers are going out for you and your family. and please if there is any way I can help please don't hesistate to email me. please make sure to try to take care of yourself, the boys need you....

Grace

[Darrell]

When I was admitted to the hospital and they took a peice of my cancer out of me for analysis, they sent it off site just like you. It took them 2 weeks to respond as to what kind of cancer it was. In the meantime, I was ready to jump out of the hospital bed, find a bottle of sisplatin and vp16 and shove the stuff in my arm.

I know your frustrations. Stay on them. Don't let them for one minute think that the status quo is acceptable to you and your family. They have to be certain as to what kind of chemo to give because of the consequences of giving him the wrong kind. But that shouldn't stop them from getting on the phone and calling up the other locations to find out what type of cancer this is.

I pray for you BIG TIME! I know how exactly how you feel. I was hoping I would have been the only person to have gone through that. Please write if you want to talk more.

HUGS

Darrell

[jme]

Thanks for responding. The thing is that we have gotten numerous opinions. He was at Moffitt Cancer Research Institute for a week. He's had 4 biopsies and they were all sent out to JOhn HOpkins, Wexler, and Walter Reid. They all found cancer in every place they looked...lung, outside of lung, and lymph. The pathologist that saw the first biopsy said that she thought it was SCLC, but the stains are coming back inconclusive. They are negative for everything else and they are definitely malignant. And it's spreading FAST! What started as a few spots on his lungs and swelling from SVCS less than 2 months ago is now in both lungs, all throughout his abdomen and popping up in tumors on his back. They haven't biopsied any of the new stuff because they don't think he can handle being cut open again right now.

He has pneumonia again and his white count is low from the chemo he got 8 days ago. His oncologist didn't want to start the chemo until they were sure of the diagnosis, becuase, like you said, it could be too dangerous. However, we're running out of choices. He felt that if we didn't go ahead and treat the cancer NOW, that the SVCS could kill him in the meantime. He's losing consciousness again because of lack of blood flow...he has lots of blood clots to go along with the SVCS.

The good news is that the radiation (5 days on, 2 days off...20+ doses so far) has reduced the size of the biggest mass.

I do have a lot of faith in the oncologist we have right now. He is getting second opinions from everyone who will call him back, but even Moffitt, a place that only does cancer treatments and research, was stumped by this. SCLC seems to be the most likely thing and we will see in a few weeks, after another chemo treatment, how well he is responding. I just want to know how scared I should be that it is spreading so fast. Will the chemo help the stuff that the radiation isn't pinpointing? If we're wrong and it's not SCLC, what does that do to his chances? I just seem to have more and more questions and all of the answers that I am getting from the doctors don't answer anything...they just create more questions. I know it's a wait and see thing right now. Have I mentioned that patience is not my strong suit?

[Welthy]

You poor dear -- what a frustrating and angering experience. Please try to hang in there. We only went for 3-4 weeks of different tests before we got the diagnosis and I was a basket case by then. I can't even imagine how you must be feeling.

(((hugs to you)))

Have you tried MD Anderson in Texas? Also, the taxol and carboplatin sounds like the usual regimen for NSCLC, not SCLC. I'm not a doctor, but that regimen caught my eye in reading your postings.

Keep the faith and sometimes it is the anger that keeps you pushing for more answers. Remember we're all here for you.

Welthy

[cindi o'h]

There is a pathologist at the Mayo Clinic in Rochester, MN. who is supposed to be world recognized in difficult to DX lung cancers. Please have your onc. check this out ASAP.

I agree with Welthy. Carbo/Tax is for nsclc.

cisplatin/ vp-16 for sclc.

Hope you get answers very stat.

Cindi o'h

[dchurchi]

I am so sorry to hear of all you have gone through.

I hope the Dr. pin points exactly what you are up

against soon. My husband was DX with Extensive SCLC

with SVCS in Jan 05. he then had mets to the brain in

July 05, but he is doing very very well right now, we are enjoying a great quality of life. Hold on to

hope, keep fighting and I will pray for your and your

family.

[Don M]

I hope you get an answer soon. It sounds like the oncologist acted with his back against the wall. I am glad to see there is some shrinkage. I spose if it is so fast changing, most of it must be sclc and perhaps should have been treated that way. I hope the Mayo guy can help.

Don M

[Carleen]

Cindi mentioned a doctor at Mayo Clinic in Rochester MN. That is actually where Keith and I went and received his diagnosis of Atypical Carcinoid after having 2 other cancer centers tell us that Keith had SCLC "we think".

From what I've learned, to get a diagnosis they need a certain amount of tumor material that they can slice and stain with multiple different staining compounds. Unfortunately your husband had a needle biopsy, and they usually don't provide a lot of material so they are a little limited on tests that can be done with that. The endoscopy should have provided more, but is also quite tricky to get a good sample. Mayo Clinic will do an independent diagnosis, but they will require a clean unstained sample of the biopsy material. Ask your onc if they have any unstained samples left.

Mayo was great, they diagnosed my sweetie with something that occurs only in less than 1% of all lung cancer cases. They are good with the rare stuff.

I will be keeping you in my prayers.

Carleen

[cindi o'h]

Carleen,

It was oncodoc that first mentioned the pathologist at Mayo and I tucked that away in my bonnet for a reason...to help jme, I think.

One of my best friends lives in Montana. Her sister was going through lung cancer staging/diagnosis and they couldn't figure it out. They were working at it for over two months with no answers. I was pulling out my hair over here because I didn't understand the delay.

Finally, the cancer board sent it to the Mayo doctor and they had her answer which turned out to be a neuroendocrine lung cancer which is treated way differently from either sclc or nsclc.

So.

I am just remembering what oncodoc said.

Cindi o'h

[ztweb]

Urgh! How frustrating! I am so sorry that you and Jeff are going through this. This disease is so destructive, it stinks.

I am such a newbie at this whole thing, and I know only dribbles of information about this type of cancer. However, from what I understand SCLC is one of the fastest growing cancers there is. When my dad was diagnosed, they told him that had he not saught treatment he could expect 2 months. They said the tumors that were huge on the cat scan would probably not have even been visable 6 months prior.

In addition, from what I understand an individual can be diagnosed with both...meaning they have both SCLC and NSCLC or the tumors have characteristics of both. One responds well to chemo, one does not.

I hope so much that you have come to some peace with this by the time I have read your post...I will certainly say a prayer.

SVCS is so scary. My dad had the swelling as well. Be sure to seek other opinions as that has been so valuable in our case as well...the treatment options are so vast, it is nice to know what is out there.

God bless.

[mitzu]

How about Memorial Sloan Kettering Cancer center in NYC? The # you can call is 1-800-525-4002. Can they do a mediastinoscopy or a VATS procedure to get more tissue out?

Good Luck and God be with you and your family.

[mayos]

I'm so sorry you and your husband are going through this...Cancer is a demon and none of us can control it. You're both in my prayers.