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Connie22

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These last two weeks have really been difficult, for me and my mom. She was doing so awesome, and theyn she started swelling bad again, almost as bad as when we rushed her by ambulance to the hospital on 12/28/05. So her Oncologist is gone for two weeks, so we get another Onc. in the same office to look at her, a week ago Monday. He sends us over for an ultrasound and CT. Before she is even out of the CT room, he calls and tells us to come back to the office immediately. So, the news is she has blood clots. When asked where he just said her chest, Ok so should she be in the hospital, He was extremely snoty and said "she can do everything that we can do for her". Ok so what is that? One shot a day of Lovelox, that's it. My question is what if it or they move? He said then we have a problem, bring her right into the hospital. So how do I know if they move, He said "Oh you'll know" Anyways, long story short..... This past Thursday (11 days past the blood clot appt) we meet with the regular Oncologist. The first thing he says is "You have a blood clot huh? I don't like blood clots" We say yeah she has several in the chest and a big one in the Superior Vena Cava (the nurse told us about this on Tuesday). He says "NO, you have a big clot under the right arm" He named the vein, but I can't remember, I think at this time I was getting pretty hot. I said nobody told us about that one. I asked about the CT scan and he said "you had a CT scan done?" Anyways he's fumbeling through the papers "Here it is, you do have a huge one in the superior vena cava and under each shoulder blade you have some. Her face is still swollen and she has developed a horrible cough, with some blood being spit up. He thinks she is doing good. How can this be. She cannot sleep because of the cough, and it is getting hard to see again because of the swelling. I am just at a loss as to what to do. He says if we seek another opinion right know, her treatments stop. We cannot afford for the treatments to stop. The good news is that her tumor went from 4.5cm to 3.8cm. He says that is very good news beings it has only been 2 1/2 months. I don't know what to believe anymore, I don't know if I can believe him!!! She did ask for her records, they will have them ready next Thursday when we go for more chemo. They didn't want to give them to her. They quized us as to why she wanted them. Anyways, we are thinking about a 2nd opinion, knowing we are going to get one, but we are nor sure as where to go. Thinking about the Mayo in Rochester, it is only about 4 hours from here or Cancer Treatment Center of America. I would like to know what everyone else thinks, or if you have any other suggestions. thanks

Hugs and Prayers to everyone on this board

Connie

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Well I think rather than a second opinion you really need to be thinking about a second opinion with the idea of switching oncologists. So...what could you get your mom to easiest if you were to switch her treatment to someone else? I don't like that she's swollen--the clot is probably compressing her vena cava so the blood isn't flowing back as it should. Blood clots are dangerous--it just seems they should have done more.

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Connie,

I am sorry you r mom is having to go through this difficult time.

I would deffinately consider a 2nd opinion. If doctors bawk at you getting another opinion, then something doesn't sound right. I had 4 opinions and was encouraged to do so. Sounds like the info. you are getting is mixed and they shouldn't question why you want copies of your records, you have that right and also get copies of ALL the scans your mom had had taken. I would run, not walk to the nearest next opinion. I don't know what kind of insurance mom has, mine was and is an HMO. I went directly to my case worker at the insurance company for approval. I did have to give them name of facility I was going to for other opinions. They approved the same day. Faxed me authorization letters, so I didn't have to pay out of pocket for going outside of my Network...

Hope this helps.

God Bless, prayers and hugs,

Karen

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Hi Connie,

I think a second opinion is a good idea but I think it is difficult to switch the radiation. The chemo should be easy to switch.Sometimes I think the doctors tell us Mom is doing well but they have very strange definitions of doing well. When I knew my Mom was failing more every day the doc kind of patted us and said "oh I dont know why you are upset, she is doing great..everything is fine" Meanwhile, everyday that went by she was weaker and weaker. Hope you are able to find a doctor who will give you better info.

Janet

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Connie,

I am so sorry your Mom is in such a bad way and that you find yourselves in such a difficult position.

I really don't have any good advice, but I have to say that it makes furious when Doctors use such a nonchalant attitude when dealing with patients. Why don't they sit down with you and explain exactly what is going on and why they can't do more about it? It may be difficult to hear, but at least you would understand the situation.

Thoughts and prayers with you both.

Paddy.

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I would get a 2nd opinion. Of course the Mayo Clinic has a great reputation. I believe there are people on this board that have had good expereiences with Cancer centers of america.

Sometimes with blood clots a stent is used *I think*

It seems like what your mom has in some sense is Superior vena cava syndrome. Maybe not exactly but close. I am not a Dr.

When there is compression around the Vena cava it can cause swelling in the face.

Again I am not a Dr, but I have read that this is done.

Good luck with the 2nd opinion. I wonder if there are people on this board in your area who could provide referrals to doctor they like that might be closer than 4 hours?

I have read the lovenox is supposed to be better than coumadin, so that is good she is using that vs coumadin.

I *believe* it is quite wrong and UNETHICAL to say that her treatments would stop if she seeks a 2nd opinion. Yes treatment may be changed by the other doctor and *maybe* there would be a short period of no treatment, but it might be better treatment for you mom?

That signals to me that you are not dealing with a good doctor. A good doctor would welcome 2nd opinions and not feel uncomfortable by a 2nd opinion request. You might want to call the AMA and ask about this? Is this actually done?

Stopping someones treatment because you want a 2nd opinion. I think it is outrageous

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Thanks everyone for the suggestions and comments. Here's a little update: After I wrote last evening I came down to her house, and she was extremely swollen and coughing (maybe a little less than yesterday morning). I called the Onc. office and spoke to the Dr. on call, as to whether or not I should bring her in or if there was something that we could do for her. His response was a little better than the other two. He told me "the tumor will grow a little with chemo before it shrinks." Has anyone been told that before? It is the first we had heard of this. Which he thinks is causing the swelling along with the blood clot. He said as long as she is not convulsing we shouldn't worry about it, but if it get's worse then bring her into the

hospital. So it was once again a long night with a restless sleep. This morning the swelling is alittle better and her cough is much better. She was taking Robbitussin every 4-5 hours, now every 6-8 hours. I think and pray that as the day goes on, there will be even more improvements. We are going for a 2nd opinion, I am not sure where yet. I hope everyone has a GREAT Sunday!!

Hugs and Prayers

Connie

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You have gotten some good advice from John, Mrs. Ry and others Connie. If you go to another facility, maybe they could supervise the treatment but your mom could still get her treatments at a facility closer to home.

Don M

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I am so sorry that you are going through this! Can't say that I ever heard that the tumour will grow before it shrinks with chemo, but I am new to this too and am having my own set of difficulties (similar to yours, just different symptom stuff that doesn't appear to be near as potentially life threatening as yours) with the doctors. I swear getting the up-front info. we need as caregivers is about impossible anymore without our own efforts at our own research and finding places such as this forum!

Best to you and your mom through this difficult time; Hugs,

Linda

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