mary colleen Posted April 18, 2007 Share Posted April 18, 2007 My husband was diagnosed via MRI on Monday with a 2.75 cm. tumor on the occipital lobe of his brain. The plan as of yesterday was that he would have whole body PET and CT scans on Friday, meet with the radiologist on Monday, and meet with the oncologist again on Tuesday to formulate the next steps. There was also mention of meeting with a neurosurgeon, but that referral has not materialized yet. This morning, the radiologist's office called and asked that we come in tomorrow instead of delaying. The nurse said that after reviewing the MRI images in their weekly oncology meeting, it was agreed that he needs to begin radiation ASAP, and that next week is too long to wait. I am not clear on what the specific risk of waiting a few more days would be, but we'll be there. My biggest concern on this is that we will be put in a position tomorrow of being pressed to begin radiation on the spot without time to consider all options. On the other hand, I will have to understand the relative risk of waiting perhaps a week. So - we will go tomorrow and see what happens. Wish us luck! Quote Link to comment Share on other sites More sharing options...
Don Wood Posted April 18, 2007 Share Posted April 18, 2007 Definitely wish you and hubby the best. Don Quote Link to comment Share on other sites More sharing options...
trish2418 Posted April 18, 2007 Share Posted April 18, 2007 Continuing to send prayers. Trish Quote Link to comment Share on other sites More sharing options...
fillise Posted April 18, 2007 Share Posted April 18, 2007 Prayers--and ((((hugs)))). I know it is frightening, but my mother keeps saying she would rather be actively fighting the disease than waiting. So perhaps getting started right away is good. Susan Quote Link to comment Share on other sites More sharing options...
ginnyde Posted April 18, 2007 Share Posted April 18, 2007 My husband was dx'd with lc due to a brain tumor. He had surgery and WBR and he was empty headed for almost 2 years. Unfortunately, they came back and I believe that some brain tumors are virulent. Based on what I know and experienced, I wouldn't wait even a minute. It is a shame we do not have the time to think through and research each decision, but WBR can be easily tolerated and very successful. Good luck. Quote Link to comment Share on other sites More sharing options...
ernrol Posted April 19, 2007 Share Posted April 19, 2007 I will have you both in prayer. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
MEA Posted April 19, 2007 Share Posted April 19, 2007 Keeping you both in prayer. Mary Quote Link to comment Share on other sites More sharing options...
pewjumper Posted April 19, 2007 Share Posted April 19, 2007 You know I'm praying, MC. We're going to beat this. Quote Link to comment Share on other sites More sharing options...
mary colleen Posted April 19, 2007 Author Share Posted April 19, 2007 I agree 100% Mitchell - we are off to the radiologist tomorrow, and I will update from there. Quote Link to comment Share on other sites More sharing options...
Flowergirlie Posted April 19, 2007 Share Posted April 19, 2007 After you meet with the radiologist, or if you get this before to ask him while you are there, I would ask what any and all options are and do some research on it prior to starting treatment. I know they do not waste any time with brain mets but I think it is good to arm yourself with the knowledge of what may or may not be available. If they say certain treatments are not available, maybe ask why??? Just my thoughts. Sending you positive thoughts that all goes well. Peace...Flowergirlie Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted April 19, 2007 Share Posted April 19, 2007 I would imagine they would recommend Cyberknife or SRS if there is only one brain met. I know that many people on this site are opposed to having WBR. I must say it took it's toll on my mom. She had WBR and then SRS twice. Let us know about the options and we can try to help. Quote Link to comment Share on other sites More sharing options...
teriw Posted April 20, 2007 Share Posted April 20, 2007 Mary Coleen, I'm SO sorry this is happening and that you're feeling rushed to start a particular treatment. I understand the anxiety of feeling rushed. Like Flowergirlie said, if you can ask about other options and see what the answers are. Lots of prayers coming your way. Stay strong. We're all pulling for you guys. Quote Link to comment Share on other sites More sharing options...
mary colleen Posted April 20, 2007 Author Share Posted April 20, 2007 All, Thanks so very, very much for all comments, advice or support. It is all so tremendously appreciated. This is admittedly a very hard time. We went to the radiologist today. He went over the MRI with us and stressed repeatedly (for reasons I cannot understand) that Vic's cancer is no longer curable....that we can get longer (perhaps 16 months) or shorter "extension of survival", and that is all he can offer. He said that Gamma Knife is not really the best option because our met is beyond the size that is optimal for Gamma. Vic was stunned, I was scrambling to explain to him in ways that were less frightening and more hopeful than presented by the doctor. Anyway, we are going to a neurosurgeon tomorrow, after PET and CT scans. He will actually determine if brain surgery is the best option. My niece, who happens to be a young neurosurgeon out east, is flying in on Saturday to look at all of the images and help us to make decisions. Anyway - I know so many here have had similar or harder challenges, and have coped with great dignity. I am just praying for the grace to cope myself, and the strength to help my husband and children through all of this. Thanks to all for your prayers and thoughts. Quote Link to comment Share on other sites More sharing options...
Flowergirlie Posted April 20, 2007 Share Posted April 20, 2007 I am so sorry to you and all of your family. It is not easy to make these decisions on the spot so I am glad your niece is coming in to take a look and give another opinion. I have to say that upon the diagnosis of the brain mets, my hubby started WBR within a day or so. Our heads were spinning while we tried to swallow all of the most recent sudden changes and we did not have time to do anything otherwise. His regular oncologist said he was in such bad shape that this was the only way to treat him at that point but he was doing pretty OK just a few days before. The radiation doctor said it would give him probably at least another 6 months to live. He did not fare well with radiation. I am NOT saying that it doesn't work for some, probably most, but be aware of what the options are, with, without, with something else...??? Wishing you all peace and comfort during another extraordinarily difficult time. Flowergirlie Quote Link to comment Share on other sites More sharing options...
sharonjo Posted April 20, 2007 Share Posted April 20, 2007 Mary Colleen, I am praying for you both. Hang in there and stay strong! God Bless, Sharon Quote Link to comment Share on other sites More sharing options...
Don M Posted April 20, 2007 Share Posted April 20, 2007 Good luck Mary Colleen. Maybe you should ask the cyberdocs about doing cyberknife.. just to explore an option. http://www.cyberknifesupport.org/forum/ Don M Quote Link to comment Share on other sites More sharing options...
fillise Posted April 20, 2007 Share Posted April 20, 2007 Mary Colleen, Thinking about you and your husband. Good that you have a family member with expertse in this area. ((((hugs)))) Susan Quote Link to comment Share on other sites More sharing options...
mary colleen Posted April 21, 2007 Author Share Posted April 21, 2007 My husband had PET and CT scans this morning, and was seen by a neurosurgeon this afternoon. The neurosurgeon scheduled him for surgery to remove the brain tumor next Thursday, 4/26. Unfortunately, the whole body scans were not read today, so the surgeon said he is going on the assumption that there would be no mets outside of the brain. If there are, he will re-eveluate whether or not to do surgery. He said that the tumor is a little too large for cyber/gamma knife, and that he recommends WBR after the surgery. My husband went ahead and agreed to the surgery, but we are getting a second opinion this weekend. The surgeon was very likeable and pleasant, and I think that my husband felt comfortable with him. The doctor feels that there is an urgency to get the surgery done pretty quickly, because Vic's vision is getting worse each day. The decadron to reduce swelling has not helped at all. Vic's mood took a turn for the worse today; he seems angry and depressed, which I understand. Our college age daughter came home today for the weekend, so I hope that her company this weekend will lighten his mood. On Monday, I'm sure that we wll get the PET/CT results from the oncologist. Logically, I think they will be ok, but I admit that I am almost nauseous with dread at the thought of being in her office on Monday. I guess that is just a conditioned response to all of the events of the last 5 days. So, here we go toward another week. It will hopefully bring good results in all ways (for all of us here!) Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted April 21, 2007 Share Posted April 21, 2007 MC, I am very glad to hear that you have an expert in on the case, that is just awesome! I will keep you in my prayers as you both embark on all these new treatments. Also, don't underestimate what those steroids can do to his mood, they can be hell on him and your family. One day at a time and patience are key... BIG HUGS Quote Link to comment Share on other sites More sharing options...
teriw Posted April 21, 2007 Share Posted April 21, 2007 Mary Colleen, You guys hang in there. Sounds like you have a good doctor and a good game plan. Hope your daughter's visit does bring a smile to your hubby's face. Hugs, Quote Link to comment Share on other sites More sharing options...
Maryanne Posted April 21, 2007 Share Posted April 21, 2007 Hi Colleen, Just want you to know that I am thinking of you and really hoping all this will work out. The second opinion is good. Although, it would have been good to look into cyberknife or gammaknife. Gammaknife I think is for brain mets. But whatever the decision, please know that I am pulling for him and I know that he will be okay. Hang strong and keep us posted. Maryanne Quote Link to comment Share on other sites More sharing options...
Flowergirlie Posted April 22, 2007 Share Posted April 22, 2007 Wishing your family a nice weekend together to enjoy and love each other! Hopefully all is going as well as to be expected otherwise and keep us posted on the test results Monday when you can. Just a couple more cents worth, I would ask what side effects can result from WBR or do some research on it for yourself if you have time. I noticed a real change in eating habits immediately, for which I was not told might happen, so it would be good to arm yourself with any information you can so you can be prepared to deal with it. Peace...Flowergirlie Quote Link to comment Share on other sites More sharing options...
mary colleen Posted April 22, 2007 Author Share Posted April 22, 2007 Thanks all, I appreciate the support greatly. I know well how difficult some of your own journeys have been recently. My niece (our second opinion) flew in yesterday and reviewed everything and spoke with the local neurosurgeon that we are seeing. I did know initially that they knew one another from having crossed paths in their medical training. She recommends him and agrees with his assesmnent that this needs to be removed surgically very soon, and that it is too large for cyber surgery. The only additional thing she suggested is that I not allow him to be alone between now and surgery. She feels there is a risk of seizure or sudden increased confusion and doesn't want him out walking someplace if that happens. I will have to arrange to work from home this week, which is ok IF I can learn to use my darn Blackberry! Anyway, things are a little tense here right now. I am trying like heck to keep things light, but his mood is very dark and I think he is talking his tensions out on me - he is annoyed or angered by everything I do right now, I have to drive him around and that is hard, and he is also confused about facts and wants to argue about them. Oh well - I can take it on the chin since he certainly has the larger burden. The biggest day to day problem right now is that his vision is worsening and I cannot seem to remember that everything has to be where he can easily find it without good vision. I am trying, but I'm a compulsively neat housekeeper and keep accidentally moving things out of his visual range. Well, I guess I'm just rambling here, kind of thinking out loud. I am fortunate that I have a very large family nearby, lots of family doctors and nurses, and lots of help here if I ask. Regardless, there is nothing quite like this group for refuge. Thanks to all of you for being here. I think of all of you individually quite a bit, and hope for nothing but peace and comfort for everyone. Mary Colleen Quote Link to comment Share on other sites More sharing options...
fillise Posted April 22, 2007 Share Posted April 22, 2007 Mary Colleen, Thanks for the update. I know you feel better about the surgery now that your niece has looked at his records. As for the rest of it--hang in there. Don't think you don't get the be frustrated because he is the one who is sick. You need outlets too. I'm glad you have lots of support--let them help you both! I'm praying for you both. Susan Quote Link to comment Share on other sites More sharing options...
Flowergirlie Posted April 22, 2007 Share Posted April 22, 2007 Mary, It is so good to hear from you and know that you are "making it" through the weekend, as well as can be expected. I keep your family in my thoughts that you will have peace and comfort throughout what lies ahead. Peace...Flowergirlie Quote Link to comment Share on other sites More sharing options...
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