Having lobectomy tuesday aug 6---so confused. nobody answering my ???

Hi, thanks for that. I am so confused as usual. lol. IF they thought yours was like mine---only in a lobe and you could be cured, why did you go through chemo before the lobectomy? As I said, until they took out the lobe and lymph nodes they thought i would be cured with just the lobe taken out so nothing was done before as far as systemic therapy.

Social worker, nbody calling me back. I am sitting here in complete entropy now. I don't even have clothes now lol. I just give up. Nobody will help. They don't care. I must have pissed someone off. lol thanks and hugs Supposed to see one oncologist tomorrow for his opinion and then another from a different hospital next week but i am reading it takes a while to get biomarkers back? so since surgery was aug 6 they prolly won't have that so seems like a waste since they won't know how to proceed w/o that?

Hi Julie,

I had Chemo to shrink the nodules to make surgery easier for the surgeon. And it worked my nodules shrunk pre-surgery.

During surgery, any nodules removed or lymph nodes are biopsied. One of my nodules showed that there were some cancer cells on it ( I forget the medical lingo)
Sometimes the surgeon removes nodules that may have cancer cells as a precaution. For example, my surgeon removed 10 lymph nodes and one showed signs of cancer. If all of them were clear they would not have recommended radiation. But because one had traces of cancer I had radiation in that one area.

Each patient is different. Ask to talk to your surgeon. Keep calling. Call the surgeon's office and ask why the lymph nodes were removed. If there is a patient platform leave a message there too.

You should at the minimum already have a follow-up appointment scheduled to discuss the results of lymph nodes etc. Yes, it does take time to get the results. Maybe 2 weeks? What did the oncologist say was he helpful?

april

Do you have a post op appointment coming up with the doctor that did the surgery which is usually two weeks after surgery? You could make a list of all these concerns you mentioned, including how to get help. Be specific. You may have to really be persistent and call people from outreach church programs to other nonprofit organizations in your community. Surely, you will speak with someone who will be able to point you in the right direction to where you need to go in order to make sure you are eating and able to take your meds. Try and keep trying.

Thanks April. They took '15-20' lymph nodes during the lobectomy to see if there was cancer in them. So yes, some came back cancerous. The reason I had the lobectomy was we thought that was the only cancer and I would be cured as I had already had 'some' lymph nodes biopsied and they were noncancerous but inflamed. I see the oncologist today at 3. I have another opinion with a different oncologist Thursday. I have no appt with the surgeon in the future except for this Friday to take out the one stitch from the chest tube. Otherwise, seems we are done. When he took out the chest tube last Tuesday and sent me home, he said the lymph nodes showed cancer, he tied off the stitches and walked out of the room! So all I know is they are cancerous, I see the nurse friday to get stitch out and he has passed me off to oncologist. Sooo, if you read this, any questions I should ask the oncologist today?? thank you! Julie I did see my primary yesterday crying and a mess from pain. He ordered home health for me. Not sure what they will do because most of what I need is help with house. Filthy house. Dirty dishes. No washer. No clean clothes. Don't know what home health does about that!!!

Hi April. was only given 10 painpills last Tuesday when I left the hospital. So taking nothing now. Did go to primary yesterday in tears and he called some in. Not sure how many. Haven't picked them up yet. What are you taking?
He also ordered home health aide--haven't gotten a call from them yet. Not sure how they are going to help? I mean, they don't clean and do stuff I can't do, correct? I have no idea how this is going to pan out. Huge mess. I have rabbits and a cat and the house is just covered in feces and hay and don't want to lose my animals when they see the living conditions since I can't do anything. Soon the city will be tagging me and putting liens on my house from overgrown yard. I am gonna lose everything over this. Enough to make me drink again. But i don't even feel like it lol
yes, I have numbness all over my stomach and a very sore spot next to my belly button. My primary pressed on it yesterday and i about passed out. He said it's my intestine. No idea what they did to me. Also the skin is sore around my belly button THE SKIN! Then the numbness of skin to the right. No idea. Wondering what happened and how long . Who knows! Thank you!!

Thanks Cindy, I am in Evansville, Indiana. Have Medicaid. I had called every org I could think of before surgery knowing it would end up like this! Nobody helped. I called a place called Cancer Pathways and they called the surgeon whose nurse told them I'd be home in 2 days and able to do anything!! So Cancer Pathways didn't call back!! My god, what idiots! So mad. Dr ordered home health aide yesterday---forgot whether I replied to you or not about this. Waiting for them to call but no idea how they can help. Just broken. Feces everywhere from the animals. Doing best I can to clean. I couldn't keep up before surgery and now i am drowning.

Thank you. I did call the oncology social worker and oncology nurse last Wednesday. Social worker never called back! Nurse said let's wait and see! lol Think I already wrote that last week. I am confused. yesterday I just finally called my primary crying. Went to him. He ordered home health aide. Haven't gotten a call yet and not sure what they can do. I had called every agency I could think of before surgery knowing it would be this and nobody helped. heartless city here. Makes me hate everyone. Just stunned at the lack of resources and those supposed to help ignoring me.

Julie a Home health aide usually helps you take a shower, cook something for you, sets up meds for you to take and may clean, but not so much the latter. They’ll change dressings on your incisions if needed. Medicaid should pay for them. Dont give up! I am a year and a half past my surgery and just now getting feeling back under my left breast area. Still get achy in my shoulders and a real pain to find a bra that doesnt irritate me. But I have been traveling and going to concerts and still working stocking groceries. It will get easier, but I will tell you as much as you get exhausted, walking will be your best friend! It strengthens you! I hope all gets better!❤️

Hey Julie,

Ask the oncologist what the treatment plan is for you. What type of cancer you have. Pain medication PT referral. Repeat that you need home health care help asap. Just keep repeating yourself over and over. You need support let that be known in a loud clear voice.

I always write down what I want to cover before an appointment, or I forget. Tell the nurse on Friday and the oncologist. Take ibuprofen while waiting for other pain meds. Call the local SPCA maybe they can get you some help for pets. I think I saw somewhere you said you are on Medicaid keep trying to reach the social worker too- what lobe did you have removed?

april

@julie67 Julie, I am only now catching up here on your painful last few weeks. You grabbed me right away with your early comment about "why did I go through this if it hit the lymph nodes?" I knew in advance that the lymph nodes would be tested at the time of my surgery. I also knew after surgery they appeared clear, but they needed to wait for the results. Well, in my case I had one lymph node come back positive, and I burst out crying (and I am not a cryer.) I thought it meant the end, too. But it really means some more work to be done. And, in my case it was a few rounds of chemo. See what your oncologist says. And, if I understood you right, what the other one says, too. You can then decide from there. I'm late with offering you a suggestion with the pain but what worked best for me was what a nurse suggested: take the narcotic pain pill and the Tylenol on the same 6-hour schedule as the Tylenol. You wait 2 hours longer for the pain pill, but the double pill effect really helped. That and a pillow they had me push into my chest and cough. It still was awfully painful, but the pillow muted it a bit. I live outside of Indy and if I lived closer, I would offer to help with your animals, since I feel your pain about that. I just did some online searches down there since I used to work with some non-profits down there and was familiar with many of them. Did you try SWIRCA? Their website mentions both in-home care and Medicaid Waivers. Hang in there and keep pulling for yourself - we are!