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barbara5452

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Now that the denial,crying and shock has worn off, Im angry, angry at my self and my doctors. After reading all post in this site, why was regular CT's not done on me ? Just a chest xray every few months. I blame myself as well as my doctors. So now here I am going for round two. Why was I not given the option of chemo the first time around as a precaution ? So many questions but only one answer THE BEAST IS BACK. The only positive thing is this time around I will make the calls, But where do I start, do I depend on and trust the same doctors or do I go on a search myself ? I want the best treatment out there do I go to a cancer treatment center or do I just go the a regular oncologist ? I need some guidance. I will be more assertive this time around....

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Barbara,

You beat this before and you can do it again. You are right CAT and PET scans seem to be the norm. If you are not confident in your team then I would either talk to them and see if confidence can be restored or start looking for a new team. You may want a second opinion at this time from one of the larger cancer centers like M. D. Anderson or Sloan Kettering. We can not change what has happened in the past and I can understand your anger. You need to vent that anger get it out of your system. Stress is one of our biggest enemies it can make our disease worse, so we need to do all we can to reduce it. Barbara I will pray that you make the right decisions and that you are able to reduce your stress. I realize to stay positive at a time like this is most difficult, but it is a must if we want to win and I know you do.

Stay positive, :)

Ernie

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Barbara,

I did go to Sloan Kettering and then received my treatment at home in Naples. It let me know that they agreed with my treatment. You may be able to the same thing. It is reassuring. For instance Sloan Kettering recommended a MRI of the brain after one year. They would not have done that if I had not requested it. Hang in there it will work out.

Stay positive, :)

Ernie

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Barbara

I think that you should go to a cancer treatment centre if you haven't already. We were going to just our oncologist in our local town ... he is good and well respected but my husband has to go to radiation at the cancer centre 2 hrs away anyways. So we have met with a medical oncologist there also. They are more focussed, have more staff, and have more time to deal with Ger's situation and already we are getting more definitive answers. If you at least get what your oncologist is going to do - then go for the second opinion at a centre of what their plan would be - then you would not have any self doubt. Make sure you get a copy of all of your reports, scans - you even should be entitled to your ct scans on disc....I go over and over my husbands reports all the time (though I can't read the ct discs I still have them). You are 1 of 200+ patients of your doctor - you never know if they might miss something or pass it up as nothing to worry about where you might catch it and question it - so having your records is good. Sorry that the cancer has come back. You beat it before you can beat it again.

Best of luck - Heather

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If it helps any, I can offer some hope here through a friends story. She is very private and does not discuss her health matters but she will no tmind idn this case. She is not a member here that I am aware of. 3 years ago, she woke up and was short of breath. Went to dr gotall the tests done and they showed Lung Cancer. 1 tumour. Surgically removed. no chemo or follow up. Dr did not think neccesary. OK!?!?! 18 months later while Deb was in treatment, Same thing happens. Has surgery again. Chemo given SECOND TIME. No recurrence that I am aware of to this day. Jus t a general note. Hope you find some comfort. Do not let coulda shoulda wouldas get you down. The past is the past and now we have to deal with the future. Always here and sending prayers.

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I would make an appointment at a Comprehensive Cancer Center. I see that you are in Kentucky. I have read that the University of Kentucky has been doing a lot of work with lung cancer. You might contact them and see if they have a teaching hospital or get direction or inforationa about the nearest Comprehensive Cancer Center. I we all certainly want to see you win this fight. Prayers

Carol

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Barbara,

I would like others recommend a cancer center. There are many excellent oncologist outside of cancer centers, but many hospitals rely on cancer centers for ther knowledge. (head of surgery in ny hospital uses MB Anderson for tumor board presentation and recommendations). So if avauilable, go to the source.

As far as what should or should not be or have been done - we learn so much as we proceed. Just the state of medicine practiced in treatment of LC has changed in the 20 months since I was diagnosed. So it's no use beating anyone up. And your energy is needed for the next fight.

I'm so sorry that you have to go through all this again, I remember all the emotions my diagnosis brought forth ..but you get past it. If you are not already there, get yourself an antidepressant. I was given lexapro early on and it has been really helpful.

Hang in there.

Mary

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I recommend a comprehensive cancer center and a lung cancer specialist over a general oncologist if at all possible- if not on a regular basis than as a second opinion to your current medical team.

Ernie is right- you beat it once, you CAN do it again. We can't change the past, just do the best we can now that we are more informed.

Hang in there and keep us posted.

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Barbara:

I am in the habit of consulting at Swedish Tumor Institute, which is a pretty good comprehensive cancer center. The last time around, they recommended alimta and I had it administered at my local clinic. Seattle is a 3 hour drive for me. You could probably do the same thing. Consult at a comprehensive cancer center for a treatment and have it administered at your local clinic. I have had my share of woulda couldas. I made what I thought was the best decision at the time and have no regrets. Just go on and get treatment. You may be able to zap it pretty good, perhaps attain NED again. I have been NED twice and hope to do it a third time and make it stick.

Don M

Don M

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Barbara,

Mom too was angry at the fact that she went for x-rays and tumor marker blood tests EVERY year, yet none of these tests ever indicated there was a problem.

Mom charged me with changing the protocols for detection before she passed. It's now my mission in this life to get the word out, raise the funds and give folks hope for early detection and treatment.

I'm starting a foundation to raise the money and awareness...but I'm mad as hell too!!! But have hope...there are a lot of people here fighting to make a change.

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Hi sweetie...I have been thinking of you and meant to write sooner...but you know alway's getting side tracked...

Barb...I am so sorry this has happened to you all over again...but listen...you survived the first time and YOU WILL AGAIN....another bump in the road...damnit!!!!!!!!!

I don't know that chemo would have helped out the first time since they say no no no....cause this from what you are telling me is not a recurance but a new one...I just don't understand this %^$#& disease...I mean from NSCLC to SM cell....what's up with that...I will keep praying for you Barb...and for all of us...None of us know's what is down the road...BUT neither does anyone without LC either....so just pray...keep the faith whatever you do....and do what you gotta do to get well again..

You can do it Barb...and you will...Write when you can...keep in touch and let me know how things are going...take care...and God Bless...YOu can email me here at pistoltart@msn.com or pistoltart@webtv.net

hugs...Pam

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Your words of hope really do help, and day by day I seem to accept things better. There are so many here that have already been through what I am trying to prepare myself for and yet you still have words of encouragement for me. All of you are wonderful and I cherish your kind words. With all of you being so understanding it makes it a little easier to bare the road ahead, I guess acceptance is part for the fight, its there and cannot be changed my goal is to be here posting tomorrow and many years from now and I hope that I have the the gift that all of you all have and that is to bring comfort to someone who is going through the battle in their own minds. Tomorrow

is the PET scan and Weds is the biopsy. Those of you who believe in prayer add me to your list as I have for many of you.

Thank you all so much.....

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Barbara, You were already on my prayer list, like everyone here. I agree 100% with the above advice; comprehensive cancer centers offer the most valuable second opinions. The best research facilities are designated National Cancer Institute centers; if you aren't sure of your nearest comprehensive cancer center, a list of NCI-designated centers is here: http://www3.cancer.gov/cancercenters/centerslist.html .

Anticipating good news for you, Teresa

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