Jump to content

Drs told us they could cure this instead it went from 2 to 4


barbara1168

Recommended Posts

A year ago my husband was diagnosed with stage 2b lung cancer at Penn. Drs said they felt they could cure this because it was early. This is my husband 2nd cancer after having Hodgkin’s back in 1972 and successfully treated at Jefferson. Now at University of Pennsylvannia, the Drs seemed so sure that they could cure this that we didn't even seek other opinions or options; I could kick myself for that now. So after just 7 radiation treatments and what I thought was too short a time on chemo of tax/carb, they sent him home to rest and get better from the treatment. Before we left the medical oncologist office, I said to him “this is it, it can’t be this easy compared to what he went through with Hodgkins”, Dr. said that’s it and we went home with only scheduled follow up the radiation oncologist. My husband got worse rather than better. He continued to loose weight, could not eat, was extremely tired and felt like he still had cancer. They could find nothing to indicate that he still had cancer but would not know for sure until the Pet Scan in March. They were stumped but just kept saying since this is his 2nd bout with cancer, it must take his body longer to heal and it’s probably depression. In the meantime he went to his family internist, his Endocrinologist and Gastro doctors looking for help. They each did their own thing and found nothing significant. By March he was no better and had lost 20lbs so his Endocrinologist, not Penn, finally suggested Medace for appetite. Now it was March so they finally did the PET scan, they told us it did not show improvement but they felt there was inflammation and the next one in three months would show improvement; we went home to wait again. In the meantime he got plural effusion which was not malignant but continues to produce fluid so he must drain it every day. Now June comes, he feels a little better from putting on some weight, but still feels things are not right. The new Pet Scan shows the old area light up went from 4.5 to 7.5 and there is a new light up in the abdomen, they still talk about inflammation, but we said we wanted a biopsy. The biopsy in the abdomen shows cancer metastasized.

What happened??? Did they screw up??? Who do we trust going forward?

How do we find the best doctor?

Link to comment
Share on other sites

Barbara The best advice I can offer you is keep searching till you find someone you like !! We do have members here In the Pennsylvania area.. Its hard to find the perfect doctor. They are only Human and they do see a lot of people every day!! My Late wife's Doctor was a 24/7 type of Doctor including Holidays!! It was not unusual to see him in a patients room on Christmas day or Easter Sunday. HE even took the time out of his day to come to her funeral! He was the best!

keep searching if you are not comfortable with who you have! Its ok to be scared right now. There is no CURE for Lung Cancer. Its all a matter of buying time every day !! Each day is a Blessing.IF a doctor says he can cure your husbands Lung cancer He is wrong. HE can treat it. There are lots of treatments in development currently. Trials take time though and we do not have enough people for trials to keep going on like they should!

Take a few moments and look at the Good news forums!!! These will give Ya some hope and renewed energy for a while!

Hang in there! Keep looking if Your not happy! its your Husbands life you are fighting for so.....be aggressive and persistent!

Link to comment
Share on other sites

Barbara-

Wow - your husband and you have been through a lot - I am so sorry for that.

I personally can't tell you if anyone screwed up or not but I would advise you to get a second opinion. My first onc always recommended that people get a second opinion as he said "if you come back to me I know you are satisfied".

I answered your other post but am still not sure where you live. Hopefully, others will come along son that will recognize the name of the hospital you mentioned.

Hugs - Patti B.

Link to comment
Share on other sites

Barbara, I also can't say someone screwed up but I will say I would have great difficulty having faith in doctors who ignored such extreme symptoms. How long and why did they wait so long for the PET. If they didn't want to do a PET too soon, there's a CT that could have possibly seen the met. Mine includes the chest, abdomen and pelvis. Just find him another doctor, hopefully someone recommended by someone you trust. I am so sorry to hear this and hope you can advocate and get your husband gold star treatment very soon.

Judy in Key West

Link to comment
Share on other sites

Hi Barbara. I am so sorry to read about your husband. It does seem possible that someone might have messed up along the way. But unfortunately this lc stuff is not an exact science. And really, it does no good to focus on that now. You need all your energy to deal with what is currently going on. So, like others have said, find a doc you are comfortable with and hopefully things will start to turn around for your husband. Please keep us posted on how both of you are doing.

Sandra

Link to comment
Share on other sites

Thank you for the feedback. My husband did not have surgery because his heart has been in A-fib and he was due for another ablation when they found the cancer. Dr Friedberg did not think my husband could take the surgery. I wish we had seeked another opinion.

As far as not dwelling on whether they screwed up or not: The ONLY reason I am asking this is because we DID trust them, we loved the radiation oncologist who did order a CT scan and it did not show anything. He has made himself available to us 24/7. Unless someone can tell me otherwise, it seems that "early detection" is just a myth, my husband new something else was wrong, he suffered for a year not getting any better, but the drs had to wait until it got bad enough for the pet scan to pick up.

Link to comment
Share on other sites

Barbara, Early detection for Lung Cancer right now is a Myth! It is knowing your own body and if something does not feel right. There are however many up and coming tests being researched for Lung Cancer Early Detection from Saliva to Urinary to Blood work...

My wife was diagnosed when she developed such a bad cough she lost her voice and went to the doctor for what she thought was Laryngitis. I have another friend who woke up one morning and couldn't catch her breath. SHe was short on breath and called Des Office. 2 Surgeries and a Round of Chemo and she is ned 2 years later!!!

Link to comment
Share on other sites

Barbara,

I am so sorry for you and your husband. This is exactly one of the reasons I don't own a gun, I just don't have the temperment for it! You are handling this way better then I could ever hope too. You asked who do you trust going forward? Your husband, yourself and God. Doctor's will screw up they are people. I learned long ago with my Mom's various illnesses not to trust anybody completely with my or my family's health care. I'm proactive to the point of being beligerant and that is just how it is. So you are on the right track as far as I'm concerned. Keep asking "why" and never take "no" or "wait and see" as an answer, especially with cancer. My ONC was a Dr. Amy Rabe at the Kansas City Cancer Institute. I loved her to death and I think she saved my life, but even she almost killed me. The dexatron had my blood pressure so high I thought I was going to die, I'm lucky I didn't. But until I told her I wasn't taking it anymore she wouldn't listen to me. Prayers are on the way!

Dana

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...