Jump to content

Thank you for all your support


dawnb72

Recommended Posts

I really appreciate everyone's input on my posting last week, your opinions and stories have really helped to give me some hope.

To update you on mom's test results.......her head ct was clear and her pet scan showed the one tumor that we already knew about and one small spot on a nodule (?) in the same lung. They have given her the diagnosis of limited stage 1 sclc.

I am very thankful that she is at that stage if she had to be at any stage, but the doctors all seems so dismall. She finally got to see the Oncologist today and he told her that there was no cure but he could "buy her some time" . Is it just me or do you think that was rude and insensitive? Mom had just begun to have a little hope and was getting her spirits and sense of humor back and he shot her down in flames.

She has an appt. at the Markey Cancer center this coming Thursday, but the oncologist scheduled chemo on that day. I dont know what were going to do.....I dont even want her to see him again.

I do have another question.......If you write back to me, please let me know how much time there was between your diagnosis and your first chemo treatment. Moms will be 14 days.

Thanks for listening.

Dawn

Link to comment
Share on other sites

Dawn, it sounds like good news for your mom.

The onc. is not doing your mom any favors with his attitude. Long-term remission is a very real possibility, and the longer a patient stays in remission and healthy, the better the odds for new treatments to be available if they are ever needed.

No matter what the cancer, some people are "cured". Only God knows who the lucky ones will be. Any onc. who thinks s/he knows more than that is playing God.

I don't remember how long it was before my Mom started chemo - it took a while for her to be diagnosed, and she was hospitalized on a ventilator for part of that time :shock: . But she's in remission now, so keep your hopes up for your mom. It might be a good idea to look for another onc. for the future, but I wouldn't delay chemo to do it now.

Link to comment
Share on other sites

Hi, sorry to hear the dx, but there is a lot of hope . I was dx'd with limited sclc almost 3 yrs ago and here I am writing to you. Mine was found when I had a sudden case of pneumonia, as you can imagine I was on massive doses of anitbiotics (which I don't tolerate well) and large doses of pain killers( which I also have trouble with). Needless to say I was more than a little spacey when I went for my first chemo - I was still waiting to see another onc for 2nd opinion - anyway the onc cancelled the session because I was really out of it and told us that waiting a week to start (this would be after my other onc appt) would not make any difference. Too bad that your doctor isn't more empathetic with his patients, I guess he doesn't realize what an impact his attitude has on them.

Stay strong and know that there are survivors out there. I shall keep you in my thoughts and hope that your mom's outcome is the same as mine.

Geri

Link to comment
Share on other sites

dawnb72

I am very thankful that she is at that stage if she had to be at any stage, but the doctors all seems so dismall. She finally got to see the Oncologist today and he told her that there was no cure but he could "buy her some time" . Is it just me or do you think that was rude and insensitive? Mom had just begun to have a little hope and was getting her spirits and sense of humor back and he shot her down in flames.

//////////////////

IMO given the cancer diagnosis that you have provided it makes no sense for an oncologist to say that he can " "buy her some time". My wife's med oncologist made a similar comment to us but she has stage 4 NSCLC with mets throughout her body. There has got to be more to your mother's cancer diagnosis than you have provided OR she has some concomitant health condition that he's considering OR you need to find a new oncologist.

Good luck.

Link to comment
Share on other sites

My diagnosis is sclc-limited, too. After doing a little research on the internet, I figured the best I could hope for was remission...and maybe a few good years, if I was lucky.

My husband and I met with the oncologist for the first time several days after my dx, and within about 5 minutes the doctor said to me...."You know this is curable!?"

I almost fell off my chair...as did my hubby, so I asked the doc to repeat what he'd said....and he did!

I don't believe my onc would have said this is curable if it isn't!! So I have locked myself mentally on that prospect...that possibility that this IS curable. Unless and until someone tells me absolutely that I'm NOT curable anymore....I will continue to believe that I am!!

Of course the doc told me there were "no guarantees"....but none of us have any guarantees anyway.....do we? The fact is, it's very important to have and maintain a positive attitude....and that is NOT so easy when you have a doctor who is old "doom and gloom" and who thinks he knows just how long a patient has left to live! I'd ditch this guy and find an oncologist who is more optimistic and more willing to join your mother's team in her fight to beat this thing!

From the day I was diagnosed, until I started chemo....18 days elapsed. During that time, I had all the CTs, a brain MRI and bone marrow test to make sure I was limited stage.

Stay positive and encourage your mom to do the same. Make sure you surround yourselves with others who are optimistic and positive....especially in terms of your medical team! There are plenty of people here who have already beaten the odds or outlived the statistics and are doing fine....so don't let yourselves get pulled down by Dr. Dismal or lousy stats, ok!

Best wishes to you and your mom!

(P.S. Excuse my "chemo brain"...but some of this is repeat info, as I replied in another post of yours. Sorry to be repeating myself...but memory these days is iffy! :roll: )

Link to comment
Share on other sites

Dawn,

First off, the dr. is not the most sensitive guy is he?? True, the dr.'s never want to say cured, but there is a thing called NED. My dad is NED right now. Your mom is so lucky to have limited stage that I would think he would be more optimistic!?!! My dads chemo started less than a week after dx. His onc. was really agressive and i dont know if that had anything to do with his good outcome of surgery and all, but Id like to think it helped! Keep your head up, and if you guys are not comfortable with this guy, switch dr.'s. You want someone who BELIEVES that he can help your mom live, not just "buy her some time".

Jamie

Link to comment
Share on other sites

Dawn,

If i were you i'd get a second opinion fast. The last thing you need is a pessimistic doctor. When I was diagnosed in April 02, one of the first things my doctor said to me was "we're going for a cure" and you know what - so far so good. So Dawn, don't let that doctor bring you down. Please read my post under GOOD NEWS and browse the SCLC board to see many examples of limited sclc SUCCESS STORIES. Also, I think it was about 4 or 5 days between the time he told me what I had and my landing in the hospital for the first chemo round. I think the day he told me he also sent me to the radiologist to be fitted for my radiation mold. He wasted no time. Positve thinking and postive action counts!

Joan

Link to comment
Share on other sites

My 2 cents worth:

The battles your mother and her caregivers will undergo are far too important than an Oncologist with a lousy attitude, believe me! I'm just a tad behind Addie in diagnosis, and just finished 4 rounds of chemo, dumped the Oncologist, and will be seeing a new one for follow-up. The one I had I called "Dr. Gloom & Doom" because of his negative attitude. I also found out that he was about to withhold treatment (radiation) because he had a "hunch" about adrenal gland involvement that didn't exist. I had absolutely no room in my life or in the fight against this disease for that jerk, so he got the heave-ho.

The Internist/Pulmonologist I see and the Radiation Oncologist both told me -- quite enthusiastically -- that they are all fighting for me, and working with me for a cure. Wow. I'd never heard those words or anything close from the Oncologist -- a cold fish. My chemo started just a few days after diagnosis -- I knew there was a tumor on 6/1/04, SCLC was confirmed on 6/3/04, and chemo started on 6/5/04 with IV Carboplatin on my last day in the hospital.

We live in a country where you DO get to choose the health care providers you see -- including doctors. If you don't have a good feeling about someone on your treatment team, then dump them, in my opinion! I can't tell you how many sleepless nights I spent at first, worrying not only about the unknown and treatments, but about all the ocnflicting information that was coming from this Oncologist and the other docs. Now that he's out of the picture, life is SO much better!

You can and probably will read so much negative about this disease, and it is what I call a "scourge," but I decided early on that if there was even as little as a 1% chance of long term survival, I wanted to be in that 1%!!! That has been my goal all along. There are others like me too -- we'll take your mother with us and include her in our 1% groupie if she wants!!! :wink:

Di

Link to comment
Share on other sites

Dawn, I"m going to have to differ with others opinion that have posted here but that's what this board is all about...opinions. My husband had what I consider to be the world's best oncologist. He was very kind, sensitive and caring. He is considered to be at the very "top of his field" in cancer treatment and research. My husband was diagnosed with sclc, extensive. Mets were in liver and spine. On our first visit after biopsy, our oncologist said......Incureable, inoperable but with treatment we can buy some quality time. Never have I considered that to be insensitive and I am a very densitive person. My husband chose to never ask how much time that "bought time" might be, but I did ask in a private setting, away from my husband. I appreciated the frankness and honesty of our doctor's opinion. Had he said....I can cure this and then the result have been different, I would have been bitter and angry. Instead, my husband knew that he would always have cancer but fought with all his might to make that "bought time" last as long as possible. The doctor told me 3-6 months, if the treatment was a success and we got 9 more months together, for which I am very thankful!!!!

Link to comment
Share on other sites

Dawn,

I would try to reschedule the chemo for the following Monday and keep the appointment with the new oncologist. See how you and your Mom feel after talking with him/her. Two or three days or a week won't be that meaningful, but having a medical team with which you feel comfortable and confident is meaningful! Some doctors have no clue as to how devastating their words/attitude can be...we are constantly told that a positive attitude means everything to our healing, so I prefer to be with doctors who do not undermine that.

In the meantime, prayers...

Margaret

Link to comment
Share on other sites

Ann

Dawn, I"m going to have to differ with others opinion that have posted here but that's what this board is all about...opinions. My husband had what I consider to be the world's best oncologist. He was very kind, sensitive and caring. He is considered to be at the very "top of his field" in cancer treatment and research. My husband was diagnosed with sclc, extensive. Mets were in liver and spine. On our first visit after biopsy, our oncologist said......Incureable, inoperable but with treatment we can buy some quality time. Never have I considered that to be insensitive and I am a very densitive person.

//////////////

If you reread my earlier reply you should be able to see that we are basically in agreement on this issue. IMHO the oncologist is either aware of other health conditions ( cancer or something else ) that Dawn's message isn't clarifying OR, if her mother's condition is being accurately described, the oncologist is an idiot that needs to be dumped ASAP. Based on my personal experiences and study of this disease the cancer profile that Dawn describes carries with it a ( widely held ) good prognosis. IMO my wife has a medical oncologist that tends to candycoat too much of his opinion. I appreciate the upbeat tone but I want honest opinion and a credible explanation when obvious problems arise.

Link to comment
Share on other sites

Dawn, it is one thing to get a straightforward, honest answer IF you ask about the statistics. It is quite another to be told outright the onc has already given up on you. I would definitely go to an onc whose attitude is to make you well, whatever it takes that is available. My wife's onc never offered any statistics. My wife stewed about it, so we finally asked. Then the onc said, "Nine months, but it varies with people". That cleared the air for us. Her onc has been on an aggressive treatment stance every since, and she is coming onto 2 years of survivorship, even though she is Stage IV. I want the doc to fight for us, not "make us comfortable" for the last days. My wife feels the same way. Good luck on your search for your mom's best treatment. Don

Link to comment
Share on other sites

Dawn, my husband's diagnoses was SCLC Limited at the beginning, too, and let me tell you, that oncologist IS FULL OF IT. Buy her some time? What? Of course this is curable! I don't like him and I think you should find your mom a better oncologist!

You need someone who will fight with you!

About your question about chemo - I took my husband to the emergency room on a Saturday night and he had his first chemo while still in the hospital that Thursday. 14 days is a bit long to start chemo if you ask me but maybe not totally unreasonable. Dave had a tumor ON his lymph nodes and they knew they couldn't waste any time to catch any cells that might have gotten out of his lymph nodes.

I'd reschedule the chemo and go to that appt. at Markey.

My two cents worth. Maybe I over-reacted here, but I do not like to hear about oncologists with a negative attitude.

Keep us posted,

Karen C.

Link to comment
Share on other sites

SCLC is rarely found early enough to be limited!! So that alone should give you hope. Mine is extensive. Read below for the details.

I had a bad xray on a Fri, so they did CT"s of the chest and abd. On Mon I had a bronchoscopy done. Went back to his office on Wed. for the diag of sclc extensive. I was admitted on Thurs. for biopsies to be done on Fri of the other areas seen on the CT. I healed up over the weeknd and started chemo on Mon. So I was really rushed thru. The PET scans and bone scans were done the next week.

Good Luck, Cindy

Link to comment
Share on other sites

My first medical onc said the same thing. I found a new one right away and his positive attitude combined with his agressive treatment and wealth of knowledge and experience has made all the difference in the world. He told me he has patients 7-12 years out from dx. That's going to be me!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.