If you are not Stage IV but have questions, you may post here
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I don't know if you remember, but a couple of weeks ago I questioned why my mums CT scan, 4 months post chemo, didnt include brain scan as she has brain met. The consultant said this week its because the brain can't be scanned too often. i guess too any can worsen side effects room radiotherapy or something? He said they tend to assess the brain by side effects? Seems a bit hit or miss to me, but I guess it's ll about quality of life since it won't change the outcome..
Thanks for listening x0 -
Hi, I don't have a question about Stage IV cancer directly, but have a surgical question for anyone that had a thoracotomy (not the VATS) and had a rib bone cut and as well as cartilage to get at a lung mass.
I had a thoracotomy for a lung resection on July 31st, 2013. They took a triangular piece of lung out that was about 15% of the lower left lung.
I realize that it takes 6 months to a year to heal up after this type of surgery and that it is an extremely painful surgery to have.
BUT.
I have a flapping feeling when I inhale and exhale when breathing when I am laying down, laying back in my recliner, on all fours (like in the garden), or certain other positions. I never feel it when I am sitting up or standing.
I tried to explain this to the cardiothoracic surgeon at my post op visit but I couldn't get the right words to explain so he could understand.
About 6 weeks ago, I saw the younger surgeon physician assistant for this problem and a new pain. He said he never heard a patient complain of a flapping feeling. But he did say the increased pain is probably from increased activity. He had me get an x-ray and of course the x-ray was fine. He said come back in 4-6 weeks.
In the meantime, my pulmonologist had a CT scan ordered and I saw him for a follow up. Everything looked good.
I saw the older physician's assistant last month. He, like the other PA, told me he never heard a patient complain of flapping when inhaling and exhaling. He wanted to see my scar, so I lifted up my shirt. Then he placed his hand on the rib cage and had me breathe deep. He told me that I have a rib moving. I didn't feel the flapping when he did that. He said it was normal because the surgeon had to cut the rib and cartilage to get at the mass.
The surgeon came in and told me the same.
I am not sure about them saying it is normal because neither one of the PA's had ever heard a patient complain about it.
The surgeon let me go and told me that if the flapping doesn't go away, then we need to find plan B.
Has anyone had a thoracotomy (not the VATS) and had a feeling of flapping like that?
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Hi Cinnamonsmiles.......wow! Have you been through a lot or what?! I haven't had a thoracotomy so I can't comment on what is normal or what is not but I can send you a (((((((hug)))))) and hope that the flapping feeling corrects its self before plan B needs to be implemented.
Hopefully someone who has had that procedure will see your question and be able to give you an answer.
Love n hugs. Chrissy0 -
I had a thoracotomy, but just to get a sample for a biopsy. The surgeon was able to reach between the ribs and I never experienced the flapping that you did. Thoracotomy can be a lot to recover from, but the rib damage may be why you're still having problems.
Was the lung tissue removed because of a tumor? My doctor sent me to a thoracic surgeon for an opinion on the usefulness of removing part of the lung, but he felt it was too serious an operation for the potential benefit. I have lots of little nodules and a loculated pleural effusion that surrounds the lower left lobe, but I've heard of lung surgery for isolated tumors. Even with the odd flapping, do you feel you've had any positive results from the surgery?0 -
The mass was much larger than what the doctors and surgeons thought by the CT Scan. It was the size of a plum. It wasn't cancerous. It was Hypersensitivity Pneumonitits. Basically, something irritated my lungs so bad, which caused inflammation. I went for over 9 months with a cough, which turned into a rattle in my chest when laying down, so short of breath I couldn't converse, and a very hoarse voice.
After the surgery, I got the treat of being on 60 mg of Prednisone for 2 weeks, then I got to decrease by .5 mg every 4th day. WHooo HOOo...I was on it from mid August to the second week in October. A long time.
Sleeping was awful while on that prednisone, but I managed to still lose weight. I did like it at the end, just the right amount of energy.I would wake up early, pet the dog, and get ready for the day. I am back to being a slug again, sleeping too long, not as energetic in the morning, but I know that it is from my night meds.
Unfortunately, they couldn't find a cause for it, so I could get it again. If it should happen, I have the allergist and pulmonologist to call so I don't suffer so long with other doctors that don't know how to treat it. There is no cure for hypersensitivity pneumonitis. They will put me on Prednisone, and watch me with CT Scans if I am having symptoms. Otherwise, the only "cure" is to surgically remove the mass and more lung.
When I came out of the fog from surgery, I noticed that I could breathe better, talk without running out of breath, and didn't have the hoarse voice. There was one scarey instance when I was walking in the hospital a day or so after surgery, and it felt like I couldn't get any air, but haven't had any problems since.
Had I not had the mass removed, it would have just kept growing, and would sort of eat my lungs by making it a mass of inflammation.0 -
Hi Papillon1,
I'm sorry - I didn't mean to sound preachy. I always wanted answers about my dad, and it's really hard to not know what will happen next or when that next thing will happen. Unfortunately from everything I know - the doctors can rarely tell you much - they might give some generalized time frame, but it always depends on if the treatments they are using 'work' and for how long. You sound like a wonderful daughter, I hope that everything goes as well as it can for your mum. I would bet my bottom dollar that hearing your voice gives her great comfort & I bet she loves hearing about those babies of yours.0 -
Thanks ziggypop. Wishing you all the best. Xx0 -
why would all other mets be controlled by herceptin but not the liver met? Is it the start of the herceptin stopping working? Is the liver especially tricky?!0 -
Papillon Liver mets can become resistant to Herceptin but there have been some success with controlling them by adding in Xeloda. Xeloda is an oral chemo. Has your Mom been on Xeloda?
Love n hugs. Chrissy0 -
yes she has (has another name beining with c I think?..). But she just took a 4 month break. That's when the beastie grew. She didn't tolerate xeloda well so has been offered another drug. I don't know the name but its tablet, one a day for two weeks then a week off. I think. We hope this may be easier on her. it was weekly uti s on xeloda.
oh, another thing - She was offered xeloda and this other one, then asked to sign to prove she made the choice. Is this normal? I find having to sign to say you chose the drug (which the onc said was pretty much comparable to xeloda as far as side effects and affect) very odd - like doc isn't taking responsibility for the treatment route we are going down? Think mum felt it was a bit like the doctor wouldn't make a call or tell her which drug may suit her more or be best in her situation. She had to chose. He was all very "they are very much similar".. I find that odd...I never have to sign to say which antibiotic I chose for my kids ear infections etc!?0 -
Papillon, I've not heard of signing a release for a drug either but maybe things are a little different here in Australia. As for being given a choice of meds, sometimes this is done even here, when the drugs are very similar to each other and do the same thing.
It is possible that her doc is having trouble finding something that she is not reacting badly to and that will hopefully work in knocking back the cancer.
Love n hugs. Chrissy0 -
I've never had to sign off on a drug either. I'm pretty sure if it is a clinical trial drug you have to sign paperwork, but not for an already approved and commonly used med. Hopefully, someone else can clarify better.0 -
I have had to sign for chemo, for Zometa, and for Xgeva, and maybe for Afinitor, but not for any other oral meds. I wonder if any of the oral chemos or targeted therapies is what your mom had to sign for?0 -
Maybe it's up to the individual doctor or treatment center. I'm on Zometa and didn't sign anything. I swear this cancer thing is crazy.0 -
this chemo is a tablet I think. It is all odd. She is in the UK.0 -
Hello posting lightly over here, hate to complain when I should feel grateful but I am not feeling well I'am 7 weeks out and hit the ground running. Hit a wall yesterday. Not feeling well, can't put words to it really. Little disoriented, tired, strange catch in my lungs, headache very ache. My vision in my left eye seems "dark" like I am seeing a shadow.
It's not a cold or a flu. Any insight would be helpful.
Tried googling it but my symptoms are too great.0 -
Hello posting lightly over here, hate to complain when I should feel grateful but I am not feeling well I'am 7 weeks out and hit the ground running. Hit a wall yesterday. Not feeling well, can't put words to it really. Little disoriented, tired, strange catch in my lungs, headache very ache. My vision in my left eye seems "dark" like I am seeing a shadow.
It's not a cold or a flu. Any insight would be helpful.
Tried googling it but my symptoms are too great.0 -
Hi raindeer, so sorry you are feeling so crappy but it sounds like you have done way too much too soon and not given your body enough time to recover both from surgery and chemo and those walls are really hard when you hit them.
For safety sake and peace of mind I would give your doc a quick ring and let him/her know how you are feeling but I have a feeling you just may need to rest to allow your body the time it needs to heal properly.
Love n hugs. Chrissy0 -
mums new chemo, that she had to sign for, is Navelbine. seems its several tablets on one day a week. Two or threeweeks then one week off. Fingers crossed.0 -
Papillon, I've heard some good reports on Navelbine. Everything crossed that your mum reacts well to it and it beats the cancer back for her.
Love n hugs. Chrissy0 -
raindeer - some great advice from Chrissy. I hope that it is that your body is just letting you know that you need to slow down and rest up. But always a good idea to touch base with your dr when not feeling up to par.
Papillon - Hope your mom does well with the new tx. Keep us posted.0 -
So... today sucked... Please help me cope. Went to big deal cancer hospital to begin transferring care and new onc said, so in reviewing the situation you have mets bc you have nodes on both sides so thats 4. I said what? WAIT! I've been told explicitly i don't have 4. she said its a matter of semantics because you have nodes on both sides that are positive so cells could be traveling and settling into distant locations. I don't view that as a local or regional recurrence. Though of course its possible that its a new primary. I didn't hear anything else. My family members took notes and asked questions. I know that she said that my care thus far was exactly what she would have done so good but all I heard was you are 4, 4, 4. Don't ever shop at Costco anymore cause you'll never finish all that seltzer. And, probably don't bother having a bmx. I was looking not for a second opinion but to transfer my care and now I feel adrift. have no idea where I am. 3 or 4. and yes there is a huge difference. I am in a late stage support group with many stage 4 bc sisters and they can tell you that life is different. I don't know where I live. Help me. I have no idea if I'll go back .. she thinks I'm going to die. My current onc tells me that I have a treatable and curable condition that is tough but curable. Thats where i hung my hat. Both are fancy hospitals. One is ivy league and nationally highly ranked / Columbia while the other is nationally ranked cancer center/ Sloan Kettering. I know that I have a fight in front of me in either case but the lack of clarity is confusing and painful.0 -
I'm just curious if there is anyone who's first mets were found in their skull. I have 2 spots showing on x-ray and bone scan. No one has used the word mets yet but I haven't talked to my doctor yet.0 -
oh, sweetie, i do know a lady outside of bco , not real well, who had one. i think they did radiation on it for her, but that was a number of years ago for her. she is doing fine.0 -
Chrissy u are so thoughtful and helpful and caring for so many--u are a beautiful person.0 -
HVV, deep breath.........breathe........it's hard to hear the number four when it's applied to ourselves as it really does set the mind racing as yours is doing right now. The line between three and four can be very blurry sometimes and it sounds like you are falling withing the blurry line.
Technically the definition of stage four is growth in a distant area.........the lymph nodes are not distant but they are also not in the breast. The new onc is right in the fact that she says that you have cells in the lymph nodes on both side make it more than possible that there are circulating cells but as of right now they have done their job of being the body's filtering system. The treatment that you have undergone, hopefully will have taken care of any circulating cells and like for all of us, only time will tell if that is so.
It is still possible for you to live a very long life with no further problems with BC........that's why we all do the treatments.
Love n hugs. Chrissy0 -
Hi Nicole bone mets can show up anywhere and the skull is always a possibility. If they are bothering you, radiation is given to those areas which will kill the cancer and stop any pain that is coming from them. It is still possible for you to go for many years without any further progression.
There are quite a few women on these boards who have skull mets and are doing well.
Love n hugs. Chrissy0 -
Chrissy, I wish I could "like" your reply. HVV, she has given you great advice. I wanted to add my support and encouragement.
Breath, and breath again and let yourself be in this space right now. It takes time to find a way to move through the confusion and uncertainty.
In two days I "acknowledge" 6 years of stage 4 from the get go. But the first months are difficult and must be lived through to get out the over side. But there is life to be lived. A good life with laughter and happiness. A life to be lived, not waiting to die.
Come here if or when you feel like it, or stay with the stage 3 thread. Maybe in this you can chose which one you want to be in. Most stage 4 people actually have mets dx in some place and it sounds like you haven't yet. Or maybe you won't ever get them. Stupid cancer is so stupid it just does what it wants without following any plan. I hate how it just does it's own thing in my body. I'm a control freak and here I am with cancer that is completely weird and doesn't do any rational thing. Stupid cancer is my mantra.
Be kind to yourself and know you don't have to have it all under control immediately. No superwoman thoughts.
Moira0 -
Chrissy and Moira, thank you. I appreciate your words and will try to take them in. V0 -
hi ladies, just wondering how liver mets start, or how they look when they start. I have a 0.5mm 'cavernous haemangioma' which they just want to check in 6months. I also have a 1.5cm bicuspid cyst in my right kidney.. Just wondering how liver mets look when they first start... I guess.
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