ejpritz

Hi Everyone, One of my good friends just told me his mom has breast cancer. I am trying to get him hooked up with a simiiar website as this. I tell him how much this helps me. Does anyone have any sites in mind I could direct him to? thank you if anyone can help. Erin

Hey everyone, wanted to give an update to some test results I got on my mother yesterday and see if someone can clarify if this is all good news or not. My mother had a pet scan last week to make sure the cancer has not spread. She has surgery scheduled for March 16, and if it had spread it was going to be cancelled. So the Pet Scan showed that the tumor in her left lung is completely gone. The chemo got rid of it. The tumor in her right lung shrunk significantly. They did say that two ribs have to be removed. I believe this is because the remaining tumor is a Pancoast tumor, so it has attached itself to the rib cage. Maybe someone can tell me if I am wrong about this. So all in all, one lobe will be removed as well as two ribs. Is it really good news that the other tuomr is gone? Does that mean it responded excellent to the chemo and radiation? Or is it just a matter of time before it returns? We are very excited and this all seems great, but I would like some feedback. Has anyone ever had a rib or two removed? I am wondering how painful that will be. But as I told my mother, she could have been given such horrible news yesterday I feel this is reason to celebrate. I am trying to make her see the positive side of this, and to not feel sorry for herself that her ribs will be removed. I told her there are thousands of people who would do anything to be in her shoes. Also, I believe they are considering placing radiation pellets at the lung where the tumor has disappeared. This will be done during the surgey, to kill any lingering cells. Does anyone know much about this? Thanks guys.

John, I sincerely apologize for my reply to your pasting about my mother being staged incorrectly. I just went back on and saw that your mom actually passed away. And here I am wishing her well. I am so sorry. Lesson learned about reading the signatures more carefully. I feel terrible, I hope I did not offend you or anyone else for that matter. Erin

John, Thank you so much. The info you are giving me has been very helpful. I really appreciate it. I hope you mom is doing well. and again, THANK YOU

Wow, thanks for that info. Well surgery has been definately scheduled...March 16. So hearing of anyone who has gone through something similiar really helps. Thanks, Erin

Hi everyone. Yesterady as my sister and I were battling with my mothers disability Insurance company (they have not approved her claim and she has gone unpaid since Oct. and now they just cancelled her health Insurance!!) we were going through her medical records. My sister got her entire file from the Dr. yesterday so that we could deliver them ourselves to the insurance company rather than wait any longer for him to get off his butt and do it. We both have authorization to see all of her records from her. Anyway, we were reading through it and saw that last month they decided that my mother does not have Stage IV. They have concluded after biopsies and all the scans that she actually has two completely seperate tumors, and have classified one as a stage 1 and one as a stage 2. My sister called the oncologist and the onc told her that what we read is correct, that the Stage IV was a mistake. No one ever told us that it had been restaged. SO we have been wondering why some surgoen would be operating when every indication we have seen is that Stage IV is inoperable. It is infuriating that we weren't told this. But , in looking at the positive side, it seems as what she has is better than her original prognosis. Is this true? Its very confusing to me to understand what haveing 2 tumors that are not the same cancer means. If anyone has an understanding of this, I would love for you to share it with me. Obvioulsy I can not count on her doctors to keep us informed. Also, she finished radiation and chemo last Monday and has not been able to get out of bed. During the treatment, she did very well, and the week following it has been terrible. I am tyring to see if this is a normal physical response or if it is depressions. I should tell you guys that the way we discovered the cancer was that our family hospitalized her in October for severe depression. When they did pregnancy tests on her there to make sure she could take the antidepressants, they kept coming back positive, which I have learned can signify cancer. So they went looking for it and found it. But she was extremly depressed to begin with and then finds out she has cancer. So I am wondering if her depression is peaking again or if it is normal to be so fatigued the week following the end of radiation. (She went for 6 weeks Monday through Friday, and had Chemo every tuesday) I know this is a lot to ask in one posting, but I would apprecaite and advice. Thanks, Erin

Well my mother and sister met with the surgeon yesterady. I was a little disappointed. I guess I thought the surgery was a definate. and now know that they have to do a pet scan in 2 weeks, and if it has spread they will not operate. If there is no spreading, surgery will take place the fistt week in March. The two tumors in her lungs have shrunk from the treatment. I know that before getting treatment, all tests showed no spreading, from Cat Scans to Pet Scans to a Lymph node biopsy. So hopefully it didn't spread during the radoation/chemo. Is it unlikely for cancer to spread during chemo? I hope it is!!!

Thank you very much for the mouthwash suggestion. I will definately have her try it out. Hopefully it will have good results. Thanks for the input.

Good Luck to your Dad. My mother just finished her first round of chemo and radiation, and I was shocked at how well she handled it. It is very scary for the family members when treatment begins, or at least it was for me. But my mother, and so many people I have talked to (on this site and elsewhere) have really good luck with it all. So good luck, and hopefully your dad will be as well as my mom has been dusring her first round.

Thanks guys. I may be wrong, but I really believe this is the right thing to do. I have a gutt feeling about it. And we were not exactly given any better alternatives. Its not for more than a month, so I am just hoping that something does not happen in this time that makes it so they cannot operate. But if anyone knows of anyone who has had surgery on both lungs, please share the info. Thanks again, Erin

Hi guys, Today is the last day of my mothers radiation, she finished chemo on Tuesday. This was her fisrt round, and I am shocked at how well she handled it. Besides being exhausted and having a bad sore throat for the past week, she has been great. I know Chemo can be very scary for patients and thier families, I just wanted to let people know that sometimes it goes very well. I was expecting a much more difficult time. Hopefully future rounds will be similiar, but I know we won't know until we get there. And, I know some of you expressed doubt, but she is having both lungs operated on. In 5 weeks. Each lung has one tumor, and accoridng to the Surgeon the loaction of them makes it possible to remove them both. As far as I know, she will have surgery done on one lung, and then in a few weeks they will go into the other. I spoke witht he Surgeon and he is very hopeful. He says he truly believe tbis cold have great results. Some may think it is too aggressive, but she have decideds to be aggressive and attack this thing. She is only 51, as many people suffering form such an awful disease are. She has many years ahead of her.

Hi guys, My mom just finished her fourth week of radiation and 3rd of Chemo. Radiation is 5 days a week, chemo is once. So far she has not getten sick. She is beginning to get very tired and has a horribly sore throat. But as I understand those are effects from radiation. Am I being naive in thinking that since the Chemo has not seemed to affect her yet it may not? She only has to go 3 more times. I am just wondering if its common for it to not start to affect people until after a few weeks. I am just trying to figure out what to expect. Thanks to anyone who can help!!! Erin

Thank you very, very much....I will go on the site with her today.

Hi guys, First off, thank you everyone who continues to answer my questions and offer support. I do not post often, but when I do, it is always very beneficial. Hope everyone is well. Its a hard thing to deal with you have given me much needed and much appreciated advice. I have a cousin who's father in law has Hodgkins. I am very close to my cousin's wife and small children, and it is hard what they are going though. I was telling Sue about this site and we began trying to find a similiar one for Hodgkins. Does anyone know of sites like this for other types of cancer? I feel that a site like this would help Sue a lot, as it has myself. I would appreciate any ideas. Thank you all, Erin

Welcome Books, I am sorry to hear the news. My mother was also diagnosed on November, stage 4. When it began I didn't think my family would be able to get through, but we have had a lot of positive news and a great support group. Please, no matter what, see more than one Dr. The fisrt Oncologist my mother went to basiclly sent her home to die. The second, who is at Dana Farber, only concentrates on the fact that there are survivors, and why can't my mother be one fo them. It was such night and day, I keep thinking about what we would be doing right now if we didn't get a second opinion. Its only been a short time, but my mother looks and feels better than she has in years (she had a thyroid problem that was causing her to feel ill until she has been under such constant care) She has gained weight, she goes out more, takes herslf to radiation and chemo, and is ready to fight. My question is, and maybe someone can answer it, how can it be so long and they dont know what stage it is? I think I am confused about the different stages and how they determine staging.

Hi guys, I signed onto this sight a few weeks ago and have not been on for a while. I needed some time to let some things sink in. Anyway, my mother was diagnosed with Stage IV, NSCLC. Apparantely there is one tumor in each lung, all other tests have indicated that it has not gone elsewhere. Lymph node biospy came back negative, (which the oncologist said was very unexpected due to the fact that its in both lungs) I am confused then, is it stage IV because it is in both lungs? From my understanding Stage IV means it has spread form one organ to another, are each lungs considered a seperate organ? But my real concer here is that my mother started Chemo this Tuesday. So far, she has had no symptons or side effects. She will go every tuesday for 6 weeks, while she is having radiation done Mon.-Fri. Now, the onclogy nurse I spoke with said that because she is doing chemo and radiation together, the Chemo is a very small dose. She doesn't expect any major side effects. My mother is insisting on going to these treatments alone. I had no problem with radiation, because enough research showed me that people can drive home following that. But Chemo? I don't know what to expect. She did go alone on Tuesday, but I am assuming that the more you go the worse you msy feel. Any advice?

Hi everyone. As you know, yesterday I wrote about how a Dr. had said he was going to operate on both lungs. Some of you expressed concern that maybe this was too aggressive, and some people have been telling me they have never heard of such a thing. Well I jsut had to call my mothers's Disabilty Insurance carrier to get the disabilty all worked out. The rep who I had to speak with just told me that her grandmother just a few months ago had radiation, chemo and then surgery on both lungs to remove tumors. She said they did one lung, and then 6 weeks later the other, and that she is in her 70's and so far has recovered fine and is having great results from the whole thing. Is there anyone else there who knows anything about this? Would apprecaite some positive feedback about this whole procedure, if anyone has any. Thanks

Thaks, I didn't even know it causes dehydration. She is not one to drink water , but that will have to change. Me and my sister can handle forcing it down. SO it sounds like she should eb able to take herself in, so we will not argue about that unless it becomes an issue later down the rode. I can only imagine that it must feel horrible to have to rely on people for rides and so forth every where, so when she can do something alone, is it best we let her if she says she wanst to? Or how do I know if she is just trying not to burden people?

Well, thanks for the input everyone. The next piece of info is that Monday the Dana Farber Dr. is starting radiation, every monday through Friday for 6 weeks. Staring a few days before Christmas. I was wondering what to expect from this. I know Chemo can make people extremely ill, but how do people do with radiation in general? Will she feel sick on Christmas? Also, she is insisting that she can take herself to the radiation appintments. She lives within 20 minutes driving time of Dana Farber where the radiation will take place. Will she be able to drive herself home? She has been told she will,, and she told me that the things she can od on her own, she wanst to do on her own, and that she knows she will need people to drive her to and form Chemo, so she would like to trake advantage of doing as much by herself as possible. Is this normally the case? I don't want to have her driving if its unsafe, but I also don't want to make her feel completely dependent on others at this point. And as far as I understand this, the radiation is not targeting a tumor, but a blood vessell. The new Oncologist said it is a little too close to a blood vessel and he wanst to prevent the tumor and it form connecting and the cancer getting into the blood. He said it may reduce the tumor size a little, but thats not what he is expecting. Does this seem to make sense anyone? It sounds like an aggressive radiation course, but again, I am new to this. And thanks guys for your input on the surgery. We have a lot of faith here, especialliy in this particular hospital. But we are still getting a third opinion, next Tuesday, at a Thorasic Oncology Clinic at Mass General which is supposed to be great.

Hi guys, update on my mother. The firts oncologist, whom I was very unconfortable with said we basically had no options, except Chemo, which would prolong her life "by months". Well right now my mother is in the hospital with a collapsed lung. The oncologist made this diagnosis without results from a PET Scan and with the first needle biopsy results which were inconclusive. LAst night an oncologist form Dana Farber went to see her in the hospital and told her "I can cure you". He is starting Chemo very soon and he said once the tumors shrink he will operate and remove them. He said that though it is in both lungs it is not "untreatable/incurrable", that Chemo and surgery can have very good results. Of course this is great news to hear, but I can't stop wondering why the first oncologist said we had no options and made this prognosis without all the test results. Is it because she works directly for the HMO? Has any one else been told such conflicting things? I don't know how a Dr. can tell someone that there is no hope and then one can say there is so much.

Hey everyone. I just joined today and so far really appreciate all the feedback. One main struggle I am having right now is trying to get my mother to quit cigarettes. She has made no effort and has not mentioned any desire to do so. I feel as thought this is extremely important right now, especially with a collapsed Lung just healing. Any advice on getting through to her that she muist do this? Anyone have a story of how they quit or convinced someone else to do so. I need her to see the importance of quitting

I live in Winthrop, Massachusetts, less than one mile form Boston. I have an appointment scheduled for the Thorasic Oncology center at Mass general hospital. I have haerd great things about this place. But this is all so new, so maybe someone knows of somehwre better or has good stories about where she will be going.

My mother has just been diagniosed with Non Small Cell, stage IV. The oncologist said it is inoperable and incurable. She has an appointment on Thursday 12/18 with a new oncologist for a second opinion, but this past friday her lung collapsed during a needle biospy and she is in the hospital. Hopefully she will get out in time to make this appointment. My main concern with the care she has been given at this point is that nothing has been started. They actaully found the first mass over a month ago, then did a cat scan, then a lung biopsy. The biopsy was inconclusive as to which type she has, so they scheduled another one which just took place on Friday. She was told that she can wait until after Christmas to start Chemo and that radiation is not an option. Starting Chemo after Christmas makes it just about two mothns since they found the mass, which by the way they went looking for due to some blood work indicating cancer somewhere in the body. I don't know if this is the normal progression, but two months between finding the mass in the lung of a smoker, whose blood showed signs and starting treatment seems a little ridiculous to me. I wanted to know what the normal time frame is...do others wait this long ? Or are we being cared for improperly. I would appreciate any advice on this. Thanks