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Feeling lost, overwhelmed, scared


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Hello all and thanks for taking the time to read this. Can't promise it will always be coherent but I will do my best.

**Edit: I never did actually introduce myself. My name is Trish. I'm a 36 yr old wife and mom of 2 amazing sons (15 & 12) and daughter of a really wonderful woman. My husband and I have our own business and we live in the suburbs of Oklahoma City.**

Last Wednesday, my mom (52 yrs old) went to the ER with "mild stroke-like" symptoms. For the first 48 hours that she was in the hospital... that is all we were told. They were running tests (CT scans, MRI's etc) but basically giving us very little info.

Friday were are told that we are seeing a neurosurgeon so that he can explain something (possibly lesions) found on the MRI. Perhaps we are just ignorant, but we thought "lesions" was a very broad term and the idea/possibility of cancer had not been mentioned by anyone at this point.

The neurosurgeon comes in with his team and they begin to explain how he can use something called a "Gamma Knife" for the tumors in her brain.

Now, it was just my mom and myself in the room when they said this and we both just froze. My mom repeated "Tumors?? LIke cancer??" and they doctor, very matter-of-fact said "Yes, cancer... didnt anyone tell you?"

Well, no... no one told us anything. Over the next 24 hours we learned that my beautiful 52 year old mom has Stage 4 Lung Cancer that has metasticized (multiple 3-4 lesions) to her brain. They then ordered full adbomenal and chest CT scans.

We were to go the the doctors office today for those results and to be referred to an oncologist. Went in and AGAIN nothing. He didnt have test results and said "well, I called yesterday and they werent ready....". He then sets us up with an oncologist (same last name as his). I cannot even find this doctor in our yellow pages. He wouldn't answer any of our questions... just basically kept saying that the oncologist would explain everything. Now, I realize this isnt his specialty but where is his compassion? My mother is terrified and needs these doctors to take charge and offer her some hope or at least a plan!

Maybe I am just looking for someone to be angry with, I don't know. But, it seems that when a diagnosis of this gravity is given that emotional support should be available asap.

Should we immediately look elsewhere for her care? Are Cancer Centers better for "whole person" care? We are new to the OKlahoma City area and I don't even know which doctors have the better reputations.

I want to do all I can to help my mom... she is my best friend and just a really cool lady. She deserves so much better than what is being dealt to her.

I apologize if this doesn't make sense... as of this weekend... nothing really does to me anymore.

Thanks in advance for any help or advice.

Trish

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Oh Trish,

This is a nightmare for both you and your Mom, I am certain. First of all, you need to get your bearings and seek out a second opinion. Being new to the area poses another dilemma as well. There are some here who are great with researching centers for tx. I'm sure one of those folks will be along. In the meantime, I will see what I can find out. You need to be asking, asking, asking, questions of EVERYONE right now. Be armed with as much info as possible. It's unfortunate the way you discovered the cancer dx. Sometimes doctors are so intent on the clinical stuff they forget the human side of it. Many of us have dealt with such individuals as well.

I am so sorry that you are facing this evil LC. You will find so much support here to help you along the way though. What you can do right away is start trying to find somewhere to receive another opinion. Then you can start researching information to help you fight!

Kasey

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There should be compassion... I'm sorry they were so cold.

I'm also sorry that your Mom and you have been dealt such a devestating blow. I know that it turns your whole world upside down essentially, and for it to be delivered in such an uncompassionate way makes it even more difficult.

I second Kasey's ideas. Get your bearings. Get a second opinion. Gather all the information that you can.

I can't comment on Cancer Centers in general, but I seem to remember from the little bit of research I did into Cancer Centers of America, that there may be one in that area. I think there is a recent post here about them--check that out, and check into them if that sounds like a good fit. I know they are billed as taking a holistic team approach.

Most of all I send you (((((hugs))))) and many prayers. We are here to support you in any way that we can. Know that. When you sign onto this board, you get a whole new bleacher section of supporters to cheer your Mom and you on in this.

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Dear Trish:

I am so sorry to hear about the trauma you and your Mom had to go through before and afer being told she has tumors in the brain and elsewhere and needs surgery! That is not a professional manner, let alone a compassionate one.

I would forget these hard-souled doctors and oncologists, etc., and get a second opinion. I feel certain that someone in this group will know where to direct you.

My prayers are being sent to you now that you will find another doctor who will give your Mom and you not only compassion but a plan to treat her cancer.

Barb

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This is the Link to tulsas Cancer treatment Center. About 1 hoour and 40 minutes from Yukon to Tulsa. Go Get'er done Get a thied opinion in this case. This is Moms Life we are talking about. Keep us posted, we are always here to help out.

P..S. Need DIrections? Good Luck!!

http://www.cancercenter.com/southwester ... tation.cfm

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Trish, I sent you a pm.

It would definitely be worth the trip to Tulsa. The CTCA is a wonderful place, a true blessing. People are given HOPE there. My mom is still here today because of God and this place.

Prayers for you both,

Christy

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You guys have been dealt a terrible blow. Take a deep breath and get your bearings. I agree with everyone else...GET ANOTHER OPINION..and keep going until you find an oncologist you relate to.

I am so sorry that this has happened to your beautiful mom. There are simply no explanations. At this time the best thing you can do besides love her is to try and help take control of her care. You guys will get a plan of action going...at that point you feel a little more in control.

We are all here for you....people on this board have been through every imaginable high and low.

Love to you,

Holly

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Welcome Trish,

I am so sorry about your mom.

I agree with what others have said, and strongly support the idea of seeking second opinions. In fact, I've requested consultations and advice for my husband from no less than 8 doctors. The first 2 oncologists didn't have the attitude we liked, they were willing to give up too quickly so we immediately looked elsewhere. 4 of the oncologists were specialists in different areas of LC.

Our opinion is that the more minds working towards a cure is better than just one. We did have a primary oncologist at our local hospital that corresponded with the other doctors, but they act like a team and have offered options and suggestions along the way; things our primary onc would never have considered or thought of on his own.

Get a good team going for your mom. In general Comprehensive Cancer Centers are better places to go for treatment. They have access to more clinical trials and news as to what is the latest and greatest. That doesn't mean there can't be an amazing doctor at a local hospital, just that a Cancer Center does nothing but concentrate and spend all their budget and finding treatment options for cancer.

I will keep you both in my prayers and hope and pray all goes well.

PS, please have your mom look into the cyberknife procedure for the brain mets. It is highly effective and causes less damage than whole brain radiation.

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Hi Trish: welcome to this site. I am sorry your mom has to deal with lung cancer. I think a team approach at a major cancer center works best for a patient. You will not be shuffled around and will get answers and a plan quickly. I am at a major cancer center in Seattle and my experience has been very positive. I don’t have to wait for weeks for an appointment and the lines of communication work very well between the specialists.

I think the following facility may be the best bet for your mom:

St. Anthony Hospital

1000 North Lee Street

Oklahoma City, OK, 73101

USA Phone Main: (405) 272-7311

Phone Alt:

Fax:

On The Web

DOCTORS

Radiation Oncology

Clinton A. Medbery, III, M.D.

Astrid E. Morrison, M.D.

Marianne M. Young, M.D.

The above doctors are radiation oncologists that run the cyberknife program.

Since this hospital has a cyberknife facility it must be one of the major cancer centers in the US. Cyberknife is the best way to take care of brain mets, or any other met that is not too small and not too big. They can kill the mets with out the need for a head frame as would be required in gamma knife. I am sure that a medical center like this one uses a team approach and that they would have an assortment of medical oncologists and surgical oncologists.

Here is a link to a message board where you can ask questions about cybrknife or lung cancer in general. The oncologists there answer questions within 24 hours. One of the frequent respondents is Dr. Medbury who is in your town.

http://www.cyberknifesupport.org/forum/default.aspx?c=4

You and your mo have my best wishes.

Don M

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Hi Trish,

Yse, seek out a cancer center - they focus on living. And at a minimum, you need another opinion.

It's so difficult in the beginning, so overwhelming, that having a knowledable and compassionate person makes so much difference. I had a pulmonary specialist as my first to diagnose and he was so kind, willing to provide information etc. It helped.

I'm sorry you need to deal with all this, we have all been there. Hang in and help you Mom. I'll remember you in my prayers.

Mary

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Oh Trish, I am so sorry that you have to go through all of this. This disease is so horrible, and it affects all in its wake...usually it seems to hit people over the head too...which really sucks! Anyway...I can say that we truly appreciated having a second opinion. I think it is a really good idea to do this, and it will give you peace of mind as well. The best docs it seems are compassionate, understanding, and thorough, and you have every right to require that for your mother. God bless you Trish, and I will most certainly keep you in my prayers.

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I am so sorry Trish for all this dilemma you and your mom have gone and are going through. That was so uncalled for and very cold. I could imagine how shocked and scared you were to hear that diagnosis.

But you have received so much good advice on this board. Please take advantage of it and read over the posts as there is a wealth of information here you have received.

There are always alternatives as far as 2nd opinions and 3rd ones if need be.

Keep us posted on her progress. I have heard good things about cyberknife that may be the way to go.

Prayers sent to her.

Maryanne

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Hi Trish!

There is a cancer treatment centers of america in OK City. Call them!

I'm so sorry that you've been given the run around on such an important issue. It makes no sense that soemone wouldn't help you to the fullest.

We're here to help in any way we can. There are people on here that live in OK City and have been through the gamma knife process. Just need to find them.

Praying for you!

Darrell

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I'm sorry you guys are going thru this.

Unfortunately, it can be common for physicians to act this way. They deal in the science and matter-of-fact of a diagnosis and the emotional support is usually left up to the patients and their families. Oftentimes, there just isn't any support to be found and you can feel "lost" among it all.

This was the major reason this website was started because we didn't get any emotional support, and left henging with a diagnosis like this, made us feel defeated and devestated.

Alot of great advice above already! Yes, get your bearings and form a gameplan of your own. A second opinion (or 3 or 4) and some research into some hospitals in your area would be first on my list.

There are some members here from the OK area who would have some first-hand advice for you.

In my own opinion, I feel like a hospital with lung cancer specialists would have the latest knowledge of what is available for your moms specific disease in terms of treatments and procedures and clinical studies of new drugs and targeted gene therapies.

Today, I would say to "find your hope". I know it's hard when you don't have all the facts and a treatment plan yet, but read these boards and see for yourself that this disease can be survived! It CAN! There are lots of late stage survivors here that have stable disease or no evidence of disease at all after successful surgies or treatment.

Hang onto that hope, and then ready yourself (your mom) to be your own best advocate.

Knowledge is power! Get all the info you can so that you can partner with your doctors to get a gameplan that will ensure success!!

Please keep us posted. I am saying a prayer for you guys!

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