Diagnosed today, sclc, but no clear tumor or mass!!??

[Addie]

Had the CAT scan on Friday, xray on Monday and biopsy of the mediastinal lymph nodes on Thursday. The initial pathology report on the frozen slide was "inconclusive" and as this has come on relatively fast...my internist was leaning towards a diagnosis of lymphoma. I'd had a CAT scan of the lungs last July and NONE OF THIS was going on then.

Today, my internist called and said it IS sclc. Aside from the enlarged lymph nodes though, there is just one area in the upper part of the left lung that they are calling a "patchy infiltrate". It is not well defined....not a tumor or a mass and is about 1.5 cm in size. Could also be a lymph node....but they think this is where it all started.

I'm still trying to absorb all this and have more questions for my doctor....but has anyone ever had or heard of sclc presenting this way? With a rather undefined "patchy" area? And as it's only in one lung and the mediastinal nodes, does that make this limited stage?

I tried today to get in to the see the oncologist that my internist referred me to.....and the earliest they could even see me for a consult was mid-June!! Somehow it doesn't seem too prudent to me to hang around for a month twiddling my thumbs before starting some treatment!

I'm so glad to know this resource is here for information and support and thank you all in advance. I'm not one who easily folds up my tent and gives in...so am hoping the right attitude will be an asset for the road ahead.

Any info you might offer re: how this all presented and just how strange or weird that might be....I'd appreciate it. Also, from lurking around and reading a bit...it seems to me that the sooner treatment begins, the better....right? It makes no sense to wait a month for a consult.

Looking forward to learning as much as possible. Thanks!

[betplace]

(((Addie)))

Let me start off with a hug, cause I am sure you need one. Welcome to our family. I am sorry you have this beast. A month is far to long to wait for a cancer that can double in size every 30 days. My Dr called the Oncologist he referred me to and set up my appointment for the next day! Head for the hills and find an Onc who understands the urgency! Preferrably one who specializes in Lung Cancer. It does sound like limited to me since it is in just one lung and a couple of lymph nodes. But I am no Onc. Find one fast and keep us posted on what is happening. Lots of support to be found here, we are glad you found us.

Blessings

Betty

[kimblanchard]

Dear Addie,

I can't speak to your diagnosis... I'm sorry to hear about your news. I'm sure you are still reeling at this point. I did want to answer you right away....My mom has sclc and had her initial consult booked with a new doctor to our area, up from Winship Cancer Institute, and she had a 3 week wait. I kept calling and calling, explaining the need for urgency. I got an appointment in 2 weeks with his associate, then in even less time on my next attempt. My point is...see an associate, go out get your "second" opinion first. Make some noise, or have a friend or family member do it for you. You'll be glad you did. There is lots of hope, sounds as if you've found this very early. The early you confirm the diagnosis and get treatment the better off you'll be. We are all here for you.

[Don Wood]

Hi, Addie! My wife was diagnosed with NSCLC and the only evidence of it in her lungs was a shadow on top of the left lung. The main tumor had migrated across to the spine. She had about 5 metastatic tumors in bones all around her body. She is now 19 months from diagnosis and doing well.

I would not wait around until June. I would try to see another onc. Perhaps your orignal doctor could recommend someone else. The sooner the treatment, the better, in my book. Good luck. Keep us posted.

Don

[JoniRobertWilson]

Hello Addie -

Ok, this sounds a little like what my husband had...I just have to concur with everyone else and say do not wait to go to the doctor. From my little understanding SCLC is fast growing. My husband started radiation the day of his biopsy - great pulmonary doctor - I'd use his name but I don't know if we can....anyway he referred us on to an oncologist after he started the radiation. Just push honey until you get in. I can't see why in any way they would make you wait.

Good luck to you.

[MO_Sugar]

Addie,

Welcome to the family. I am sorry you have to be here but I am sure we can help you deal with this beast! My suggestion would be to consult with another oncologist at the EARLIEST possible date. SCLC can double in size in a months time and you sure don't need that! I don't know what part of the country you are in or how close you are to a cancer center but I would try and get someplace asap and get treatment started.

Prayers for healing and strength being sent your way.

God Bless,

MO

[mjb]

We're sorry to welcome you to this board but glad you found it - it's a wonderful place to get answers. When my husband ask our oncologist how long he had had this cancer the oncologist replied that there was no way to tell without a ct or xray from the month before and the month before that and possibly the month before that - that it was so fastgrowing it's hard to tell. He also the emphasized the need to set an appointment up with him the week following my husband's release from the hospital so that we could start treatment because it grows so fast. No way would I wait a month or more to see an oncologist. It does sound, however, like you have started treatment and that's good. The things that people have overcome on this board will amaze you. God bless.

MJB

[mjb]

Addie - Everything I said holds, just got yours mixed up with another message and realized that you haven't gotten to start treatment yet.

Hope that wasn't too confusing - I find myself getting a bit spacey lately trying to handle things:)

MJB

[Addie]

Thanks for the responses. And yes....waiting is not a good plan! My internist said tonight that he will get me in this week to see the oncologist. The nurse that called me earlier obviously didn't have a clear picture of the situation. But my doctor talked to the onc. and will call him again in the morning so I should get in by Wed. or Thurs. this week.

I'm in New England....and actually, my internist has even suggested that I look into Sloan Kettering....in case it happens that treatment is not successful, then I'd already have an established relationship with one of the best cancer centers in the country. I intend to ask him more about this...to see if he has a specialist in mind to recommend. But from where I live, traveling into NY for treatment would NOT be convenient at this point.

FWIW....I was a smoker but went from 2+ pks last Sunday down to 2 cigarettes last Thursday....the day of the biopsy......and haven't had one since. Won't smoke again....whatever it takes....I won't do it. Wish I'd said that to myself 30 years ago!

I know that scans will have to be done to be sure....but up to this point I have not been symptomatic at all. No shortness of breath, weight loss or pain. At least none that seems to relate. I was dx'd last summer with Polymyalgia so tend to have a lot of aches, much of the time...but not due to this, I don't think.

I keep thinking of Gilda Radner's comment...something about how having cancer is like belonging to a very exclusive club that you really don't WANT to belong to. Sad but true, isn't it?

I'm sure I'll be around with lots of questions as treatment gets underway...and I'm glad to know that there are many here who have already done so well or outlasted their original prognosis.

Sorry...I've sort of been babbling all over the place here....but it's been that kind of a day. Maybe by tomorrow I'll have more of my wits about me and will be a bit more coherent.

[ginnyde]

Welcome Addie and wish you didn't have to be here.

Please babble away (other name for this site is The Babbling Place). This is THE site for babbling, venting, laughing, crying, supporting, caring, learning, etc, etc.

Glad to hear that you are not waiting. Wishing you good luck and blessings.

Ginny

[S. Jane]

Hi Addie and welcome. I'm SO glad your internist is moving on this one! When we learned my Dad had SCLC, we acted very quickly to get a second opinion, and were able to get an appointment in three days. The second opinion just helped confirm what my Dad had to do, but it was comforting all the same. People who know about this disease, knows that it moves fast. It was a whirlwind of tests and appointments, hardly given time to digest it all, but this is a very aggressive cancer and it doesn't wait for you. My Dad did it all - chemo, radiation, now PCI and is complete remission!

Jane

[MayFrog]

Welcome, Addie, to this most supportive of clubs. I was also recently diagnosed (Mid-April), and was lucky enough to start treatment within 4 days of diagnosis.

I am SO glad your internist understands that time is definitely of the essence with SCLC....it's great you're getting to see the onc this week.

I'm a New Englander, too---Boston.

Again, welcome..and keep us posted.

As far as being coherent....I babbled on and on with my first post....I think I'm starting to get back to "normal"...it's just that we're so overwhelmed with a myriad of emotions when we first hear that word "cancer" and it applies to us!!.....

Hope to hear more from you soon

Mary

[Addie]

I know this place is going to be such a source of comfort and info. Thanks to all who've replied.

Funny...the mental gymnastics one goes thru with something like this. My worst moments were having to tell my kids and my best friend, who is really like a sister to me. But I got thru it...and my best friend gave me my first real laugh when she said, "At least we know you look good with no hair!!" I wore my hair VERY short for many years. I mean 1/2" short!!

My entire family of origin, but for one....is in a cemetary somewhere. Not one of them died of lung cancer or ever even HAD sclc....yet they all smoked. One sister, who died of other causes, did have lung cancer about 14-15 yrs ago....but she had a lobectomy and NO chemo...so I'm assuming she had nsclc. At the time, I never knew much about the different types.

I have a large group of cyberfriends...met thru a discussion board that is now defunct. But we've all stayed in contact and I have marshaled a group of them to be my "team"....in my corner as I move thru this. I cannot tell you how comforting it's been to me already that each of them has stood up to say, "Whatever you need! I am here for you!!" Already I can feel the strength of their support and care...and I know it will be a huge help to me.

At the very start, I kept saying that ANYTHING other than lung cancer would be preferable...because of that stigma. Because I knew some people would think, "Well, she smoked! It's her own d*mn fault!" I just didn't want to have to deal with that....even mentally.

But now that I have the diagnosis....I realize I'm thinking this myself....and feeling like I should apologize to those I love for putting THEM thru all this angst and worry. Of course, they've all told me to stop....to ditch the guilt and just get on with taking care of myself.

Have I mentioned how lucky I am to have the family and loved ones and friends that I do?

There is comfort here too, in knowing how willing people are to share their stories and information and to offer up support and understanding. I hope, once I get my head fully around all this and start treatment....that I can give back to this community in a similar fashion.

So many questions still. I will try not to bombard you with them...but need to go seek out some info on nutrition and also the effects of being on prednisone while undergoing chemo/radiation - if any.

[Cindy RN]

Addie-Welcome. As everyone else said sorry you have to be here.

Glad your Dr is pushing to get you into the onc. SCLC is fast growing. I had been in remission for a year with a CT every 2 mos. In Feb of 2003 I had my reg CT and it showed a baseball size new tumor in my L lung. Not there 2 mos earlier. Do not let them put you off.

Good luck. I am now 3 yrs and 3 mos past the origional diag. and mine was extensive.

Love Cindy

[Remembering Dave]

Addie,

I'll briefly tell you about Dave's diagnoses (this is Karen, his wife). We went to China in October 2002 and adopted our daughter. He had bad respiratory problems after returning (long dormant asthma returned, bronchitis, respiratory infections). China was very polluted and all three of us had respiratory infections upon returning. But Dave's never got better and he started having leg cramps as well. On March 22, 2003 (10th wedding anniversary weekend) I took him to the ER b/c he couldn't breathe well, was weak, and the muscle spasms were BAD. That was a Saturday. That night the ER doc said he thought it was LC. He had a biopsy on Wednesday and on Thursday they started him on chemo. He had one tumor in his left lung and one on his lymph nodes between his lungs. they didn't want to waste any time. He was in the hospital for a week, getting biopsy and porta-cath installed, but also b/c the leg cramps were caused by a severe drop in the sodium levels in his blood which was caused by the lung tumor.

Anyway - long story short - DON'T WASTE ANY TIME STARTING TREATMENT! This is a fast growing cancer and you want to nip it in the bud!

Your tumor sounds really weird and different but somehow I'm not surprised that it's SCLC. It's just a different type of animal.

It sounds, as I read down your posts, that your internist has gotten the ball rolling. I have to tell you, the docs in the hospital didn't miss a beat. The ER doc got a kidney specialist in that night to see Dave for the sodium level thing, he in turn got a pulmonary doc to see Dave on Monday, who in turn got the thoracic surgeon who did the biopsy and port cath to see him on Tuesday, the oncologist saw him on Wed and the radiologist on Friday.

They didn't waste a minute of time, and I am grateful to all of them.

I was at the hospital with him practically 24/7 that entire week so wasn't able to do much research while all of this was happening, but I called our family doc who gave us good input and who sent a doc friend of hers doing rounds at that hospital in to check on things, and also Dave's sister Becky is a fund raiser for children's cancer out in CA (she's also on the board of directors of this website) so she gave us some good info over the phone and mostly we just went with our gut feelings on things and what we found out over the phone about the reputations of the doctors that were being sent in to see Dave. We lucked out, b/c they were all super-duper.

Sorry to ramble, but I just want you to be as aggressive as you can be with your treatment, but I also want you to know that as long as you do you will be OK. Dave is in remission. There is plenty of hope here. SCLC responds very well to chemo and radiation.

(p.s. Dave was a 20 year smoker. his oncologist said that his smoking most certainly caused the cancer and if he continued to smoke nothing he did for Dave would be of much good at all. Dave hadn't had a cig in a week or two before that b/c he was feeling so bad and he hasn't touched one since and never will. Yes, I know he beats himself up over that, but that's not the important thing now. The important thing is to fight the cancer and keep a positive, I will live, type of attitude. So just don't smoke, and forget about it - that's in the past!!! Hang in there!). We love you here!

Keep us posted, and God Bless you,

Karen C.

[Snowflake]

Addie,

Stop beating yourself up about having smoked. Some people with this disease NEVER smoked. Nothin' saying you wouldn't have contracted this somehow if a cigarette never touched your lips...

Glad you got through and got "mid-June" moved up to "later right now". Time IS of the essence.

Welcome to the family and the journey. We're all friends here, makes the journey a little bit easier. The road is bumpy, sometimes the weather is bad, but the traveling companions make it worth staying on track. Here's hoping for sunshine and roses...and spring showers NOT torrential downfalls.

Take care,

Becky

(One of those "lucky" non-smokers)