Anyone had this same experience?

Hey all. I ran across this board while looking up lung cancer info on google. I am very confused and would like to know if there is anyone else out there who has gone through the same thing. My mother was diagnosed with small cell carcinoma 1/07 by 5/07 she was cancer free. The original tumor was in her right lung about the size of a gulf ball and by the time she finished chemo it was gone. She had preventative brain radiation I believe about 30 something sessions since this type of cancer tends to spread to the brain. By 12/07 the cancer had returned to the right lung and was double in size. She began chemo again this time lighter doses every other week M-F. She had a pet scan about a month and a half ago and it showed that the tumor was still present, but it was shrinking in size. On 7/6 she started to feel sick and ended up passing out. At the hospital we were told she had several small strokes and seizures. She was very incoherent and can not walk....she was fine on 7/5. After transferring her to another hospital and repeating several tests her oncologist told my family that the cancer has spread to the brain and that she has multiple brain tumors. This is all very shoking because we didn't see it coming she was doing so well. Now we can barely understand what she is saying the doctors say its because of the tumors. Long story short they are giving her 10 sessions of brain radiation again, but the doctors are giving us no hope. Can this really be happening? My mom has gone through so much to battle this cancer and I just can not accept the fact that it is going to kill her. Has anyone else been in this same situation? If so can you please tell me your experience? Also has anyone heard of this...I asked her doctor if he would do a full body scan to see if this has affected any of her other organs and he said it would be pointless b/c once it spreads to the brain it has spread to the rest of the body is this true?
Sorry for such a long post I am just reall confused. Thank you.

By tamsue
Posted July 24, 2008 at 11:20 pm

My mom has NSCLC and is stage IV. Although it is not the same as your mother, one thing that I can tell you is to never give up hope. There are a lot of wonderful survivors on this website who have helped me with my questions/concerns and they have "been there and done that" so I'm sure you will get some answers.
If your not happy with the doctor's attitude find one who is more upbeat and that gives you hope. Afterall it is in God's hands and they have no right to say it is pointless! I will pray for your mother. Keep your head up, keep fighting and never give up!

God Bless,
Tammy

By doglover
Posted July 24, 2008 at 11:27 pm

Thanks Tammy. I keep telling myself that only God can decide when it will be my mothers time to go. I am just very sad because I live 346 miles away from her and when I went back home for 2 weeks to be with her it made me so sad to see her like that. She doesn't know that it has spread and we asked her doctor not to tell her. She suffers from depression and it will not do her any good to know that. She thinks she is in the hospital because of the strokes she had. Thanks again.

By Lindonna
Posted July 25, 2008 at 5:18 am

My father, 65, like your mother, was diagnosed with small cell carcinoma in the bronchus (airway to the lung) April 2007. The doctor said it was extensive, which means it has spread to the lymph node, the liver and the bones.

Having gone through 4 out of 6 cycles of chemo, he is now receiving some 30 sessions of chest radiation. He is up and around. But after the doctors found out that his cancer was extensive, they already told us that it might not be curable. They explained further that it means although the tumor might shrink or disappear after the chemo, there is a great chance of the tumor coming back. When the tumor comes back (can be anywhere), it will usually be more difficult to overcome. When I asked about the survival time of average patients with this condition, the doctors mentioned 7-8 months.

The doctors also strongly recommend preventive brain radiation, because they say there is a very high probability that this small cell carcinoma will spread to the brain. When it does, it will usually be fatal. On the other side, they say, receiving this brain radiation doesn't cure the cancer. We haven't decided whether we will pursue this radiation due to the reported side effects like memory loss, permanent hair loss, damaged teeth/eyes, etc.

I was first devastated when I learned all this. But God has really given me and my family the strength just enough to go through each day, feeling grateful that we can have another day with my father. I have also learn the lesson of unattachment, saying to myself if one day I have to see him deteriorate, I will stay by his side, do my best, continue to love him, til the very last moment, believing that one day I will see him again.

I understand you feel very overwhelmed with your mother's condition. I am praying for hope for her and you and your family. Where there is hope, life is worth living.

Linda

By doglover
Posted July 25, 2008 at 9:49 am

Linda,
I am sorry to hear about your father. Cancer is such a terrible thing and it seems to be taking over. My mom stopped smoking 2 years before she was diagnosed, but it was too late. I am very fearful of what all the second hand smoke might have done to me I have seen my mom suffer so much and she is so strong I would not be able to do the same. As far as the brain radiation the only side effect my mom had is permanent hair loss...it never grew back, but it did make her extremely week and sent her to the hospital a few times. I will pray for your family as well and I really hope that one day this horrible disease has a cure.

By pattyp1
Posted July 25, 2008 at 2:13 pm

hey,
As you've figured out by now, SCLC is a sneaky, awful disease. The doctors are in an awful spot right now - they would not be able to tell you why your mom is a long-term SCLC survivor, why it came back, or what the future holds. They would like to, but they can't. THAT is the reason they can't hold out any hope. All they can do is deal with probabilities when you talk with them about prognoses, and if they get too focused on that, they are not focusing on stuff they can do.

It sounds like your mom has a couple of problems right now - first, tumors in the brain. There are three approaches - surgical, focused radiation, and stereotactic radiation (gamma knife or cyber knife). Ask the radiation oncologist to talk to you about all three. Second, there are often thin layers of cancer cells that can be nuked with variations of PCI.

A neurologist needs to be brought in - there are medical things (drugs) that can be brought in to help while the radiation starts to work (radiation works and builds up with time - its not immediate).

A little SCLC 101 - early in the disease process, the primary tumor will "sneeze" and send little cancer cells out into the lumph system. Favorite vacation destinations for the cells are the brain (between the gray and white layers), the liver, the bones, and into one (but not the other) adrenal gland. It is very possible that the brain stuff is left over from the first sneeze.

Yes, you should be helping your mom's onc come up with the idea to do CAT-scans (with contrast) on the upper and lower abdomen as well as an MRI bone scan (with contrast). These sets of scans should provide an accurate view of what's going on in there.

OK - let's talk turkey - should you be scared? You'd be dumb if you weren't - that's normal. Should you have hope? Heck, yeah - as long as mom is still breathing, you have reason to hope. Please keep asking her medical team to focus on things they can do to improve one of her symptoms at a time. Know however, that the brain MUST be your first priority.

Wishing you well
Hugs
Pat

By doglover
Posted July 25, 2008 at 7:00 pm

Thanks Patty. The doctors had a meeting today with my siblings and they basically said to let my mom go and send her home on hospice! I can not stand these doctors they are not God and she is getting better even though they say she is not. They can not know if the radiation is working because they have not done any tests to see that. She is more alert now and very coherent so I dont know what they are talking about. We are looking into having a second opinion her oncologist is just to negative for us and we can not deal with him anymore. I am very scared, but will not lose my faith. Thank you for listening to me.

By pattyp1
Posted July 25, 2008 at 7:10 pm

are you close to a major cancer center? or a large city hospital with a good radiation center? If so, go get a second or third opinion. There are doctors out there willing to work with families!
she's still breathing = there is hope
hugs
Pat

By doglover
Posted July 25, 2008 at 7:18 pm

My family and mother are located in Miami she is getting treatment at Baptist hospital any recommendations in that area? We refuse to just give up on her she tells us all the time that she is not ready to go yet.

By irmaly
Posted July 26, 2008 at 9:33 am

doglover, I am sorry you are going through this. We lost my father back in February to this terrible beast.

I would like to make one suggestion. You say that several tests were run. Was one of them a lumbar spinal tap? I ask this because when my father suddenly had seisures out of the blue (before his PCI), they suspected the cancer had gone to the brain. He was put on an anti-seisure medicine and went on the with PCI and completed it. Even so, he continued to have all kinds of serious neurological problems--walking and standing and speaking etc. I consulted Dr. West and he said it might be the cancer had gone to the spine. Even though spinal taps are not definative for this, they can perhaps tell you if this is what is really going on. This is called " Meningeal Carcinomatosis." You can read my discussion about this with Dr West here:

http://onctalk.com/bbPress/topic.php?id=961

Mind you, they often do not test for this because there really is no effective treatment and because sometimes the spinal tap itself is difficult. We wanted to rule this out, however, so we went through the tap and it was not hard at all.

Again, you can read my full experience at the link above.

My best wishes to you and your family.

By doglover
Posted July 26, 2008 at 10:28 am

Irmaly, Thanks for your reply and I am sorry that your father passed. I don't think my family would want to put my mom through a spinal tap it is very painful I know since I had one when I was 7, 18 years later I still remember how painful it was. We really just want a second opinion because her onc. is the most negative man ever. Hopefully we find a good one in the Miami area. Any recommendations?

By irmaly
Posted July 26, 2008 at 1:46 pm

I don't know of oncs in the Miami area, but I will tell you that my father, in a VERY weakened state, went through the lumbar spinal, and it was painless and very short.

By StacieK
Posted July 26, 2008 at 11:44 pm

I am so sorry for what you are going through. I do not understand why they don't do a full body scan, from what I have read I don't believe because it is in the brain it must be in other organs....it seems very rational to see exactly where it is to see how to treat.

The doctors can be so frustrating and I feel too that now that my Dad's cancer has returned they aren't very hopeful and are so pessimistic. Well, we know what we are up against and the statistics, we don't need them reminding us....they should focus more on the few people who have survived long term and are feeling good because they are out there and there is no reason our parents couldn't be one even if the chances are slim. Our parents need to hear the positive stories to stay positive themselves.

I am so sorry and know how you feel, I can't stand to lose my Dad to this horrible disease. Your dear Mom is in my thoughts and prayers.

Stacie

By doglover
Posted July 27, 2008 at 1:24 am

Stacie,
Thanks for your reply. I am sorry that you are going through this as well. I am only 25 and I feel like I didn't get to enjoy my mom as much as my older siblings who have had her around forever. I spoke to my mom today over the phone and it broke my heart just to hear her voice. I will be going back home in about a week and a half and I hope I get to see her. I told her about this site and the many people that are fighting just like her. I told her I pray for her every second that I can and that she will get better. I really pray to God that she does I don't know what I would do if she wasn't around.

By pwatson1977
Posted July 27, 2008 at 10:56 am

I was reading your post and it broke my heart. I have not posted on here in several weeks but I wanted to reply to you. My father passed away 6 weeks ago. He was diagnoised 4/16/07. He had Stage 4 NSCLC. He was was only 45 years old. I was 28. Him was to young to die and me way to young to be loosing my dad. When he was first told he had cancer they told us that it was on both Lungs and had matasticized to his brain. They gave him 6 months with treatment because it was so extensive by the time it was caught. He was never sick. Had a yearly physical. Went to the hospital after having a headache that he could not get rid of for 4 days. They started treatment immediatley (radiation). After the radation treatments then they started Chemo. This continued on and off for about 10 months with several more Chemo's and one more round of radation. After every Chemo or radiation treatment ended they always did PET Scans, CT Scans, MRI's, blood work every week, and X-Rays. It was always pretty much the same answer everything looks OK there is no new growth anywhere and the tumors have not grown and either they have not shrunk that much or they shrunk a good bit. From the beginning that this was treatable not curable BUT we always held out for a miracle or just some tiny hope! ) But, we were still on the same course of treatment. One day 3/08 he started having seizures. My mom took him to the doctor (onc) and he said that it was part of the brain cancer. Slowely but surely he would go from 1 day to 2 maybe 3 then they just happened all the time. They effected the way he walked and talked. He got to were he could not even stand up by himself. He would want to talk and could not get it out so he would get fustrated. He hands shook alot scared us especially when he would ask for coffee!! Then he started falling right after he stood up or while just trying to walk. One morning around 4 o'clock he needed to go to the bathroom..... My mom always went with him ( he hated loosing his independance of not being able to go to the bathroom by himself ) ..... She got up with him walked him there and told him to stay while she went and checked the sheets..... sometimes because of the seizures he lost blatter control..... Well while she was in the bathroom not even 15 steps from te bathroom he decided to go back to bed by himself....now granted he was having to use a walking cane at this time also because of the unsteadness.... WELL all of a sudden she heard thump, him hollar like he never had before and she ran to him. He was on his back in the hallway he had a seizure and fell. He hurt pretty bad because they called the ambulance to come get him. When he got to to hospital the doctor order the usuall round of test MRI, CAT Scan, Pet Scan, X-Ray's and so on. His back had been in pain on and off for several weeks already but this made it 10 times worse he said. Thankfully he did not break any bones. BUT we received very bad news about his scan results. Now keep in mind at this time he had scans done every couple of weeks and was still doing Chemo every day. The cancer was now in his bones, lymph nodes, heart, chest,and liver basically everywhere! That was why his back had been bothering him. They immediatley started radiation on his back because they told us if they could not shrink the tumors because of there size and location he would soon not be able to walk it would paralize him!! Not only was the cancer everywhere but looking at the X-Rays the Dr's said he also had Phenomonia.were stunned he did not so much as have a runny nose just a cough but actually only got that after he was diagnoised with cancer. So needless to say we were devistated. Went in the hospital what what we thought was a broken back or bone and came out with the worst possible news "IT HAS SPREAD". It seems like everything happened so fast once he went in the hospital. All of the other test that were done weekly or bi-weekly were showing no growth and shrinkage. How do you go from that to its everywhere? Just that fast!! So I totally understand where you are coming from. Yes we were given six months with treatment but he was doing so good at 10 months he was still himself just always tired or really weak and slept alittle more than he did before. But at this point he had already beaten the 6 months odds and we were thrilled. He was released from the hospital 5 days later pain was still uncontrollable. He finished the 11 radation treatments and went back to see the doc for more test to see if it worked. It did help but we were told this time the cancer was now in every one of his organs and then some. So the Doc recomended hospice. We were devestated and so was he. After aboy 2 weeks of hospice coming they still could not get his pian under control. So they recomended admitting him to what they call the butterfly unit of hospice (ts like a hospital but not really) So that they could get his pain under control and the seizures also because they were also back full force. After being in there for about 6 days or so they got the seizures under control by upping his seizure medication and his steroid. But nothing was touching the pain and believe me they had him on some strong stuff and tons of it. So they put in the main pump continious morphine every hour. That seem to help at least on and off but it was down hill after there so they released him to go home and the goal was to keep him comfortable. That was in 4/08 One year later. It all was a world-wind after that. Things began to deterorate so quickly. He quickly became bed bound, quit eating, barely drinking any water, and slowly the conversations were less and less and when he did try and talk some days you could understand him some days you could not. I will not go into details just yet about the end but if you want to read those you can look in my other post. I am so sorry this was so long but when I had questions I was looking for very detailed experiences not that everyone goes through the same thing but I wanted tons of details. I will gladly answer any questions you might have because i know i left out a lot in this post. I just know what you are going through and I know you have alot of unanswered questions. So I just wanted to help if I could. I guess the point of this is that one day everything can be going as good as to be expected and then the next you are knocked off your feet. Pleas let me know if I can be of any help!!!
Patricia

By doglover
Posted July 27, 2008 at 11:36 am

Patricia, Your story brings tears to my eyes. I seem to be going through the same with my mom. She was so normal on 7/3 she walked me down the aisle at my wedding and on 7/6 she was in a hospital doing so bad. It just doesn't make much sense. Thank you for giving me details really I want to prepare myself for what I am up against. Thank you.

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