Hello Jim,
It has been some time since I last asked questions for my wife. She was found to have some bone pain which was put down to SCLC spread. Nothing was found in her chest. She received radiation treatment to the bone and it looks like the cancer was dealt with. Thanks to some information from this site we learned a bit more and my wife received a PET scan in November for some reason they needed to wait for a long time after the bone treatment. The PET scan showed no evidence of malignancy, this surprised us all as the scan covered all her body. As an earlier CT was also clear the consultant told us that a bronchoscopy would be unlikely to provide the answer of diagnosis.
We are now very unsure of our next move. We originally came from Holland so are not familiar with the English medical system, but so far we have no complaints. We are just not sure what to do next, other than wait?
I have read many articles on small cell lung cancer and know that it grows quickly. Is it possible or even likely that the original diagnosis of small cell carcinoma metastic could be incorrect? My wife is still very tired and fatigued so we will keep going to the doctors but needed to ask if we are at a stage where we should be looking for alternative reasons for her symptoms?
Hoping I have made sense here?
I have just found some comments, this one from Dr West
Don't forget that cancer progresses, so it isn't typically extremely difficult to find after two years of cancer-related symptoms.
And this one from Dr Goodgame
As Dr West's said, the fact that you have not felt well for two years, almost certainly means your symptoms are not from cancer.
I found them here
http://cancergrace.org/forums/index.php?topic=9521.msg75443#msg75443
Are these statements valid for my wife and do they apply to small cell?
I will try and not add any more questions, Thank you.
Kev
Reply # - February 22, 2017, 10:42 AM
Hi Kev,
Hi Kev,
It's true that your wife's symptoms could be from something else and a workup on other possibilities could help. The wait on scanning after radiation was to give the radiation time to stop working and for the inflammation caused by radiation to subside because it looks just like cancer on a CT and PET.
The term for a cancer that doesn't show up as a primary is called occult primary. While it's true that cancer and especially sclc would show up by now if it existed is true but the fact the cancer can do anything is also true and it could be lingering in the blood. In this case the options are to wait and see; or to do chemo to see if symptoms abate are both understandable. I wonder if treatment in this case can be worse than doing nothing since chemo has its own set of toxic side effects. If your wife feels fine except for some fatigue there are much worse things including just the side effects of chemo. I don't think we have much to offer in specific guidelines since there aren't any in this type of very individualized case. A 2nd opinion from a teaching hospital with a specialty in occult cancers or lung cancers may be able to offer a clear understanding of next steps.
Speaking as someone lucky enough to have a husband still NED after a diagnosed nasty pancoast tumor and undiagnosable mets, and 3 years of treatment, fatigue is the least of his physical issues. Not that your wife can't feel better than she does now but treatment can certainly be the wrong avenue, it depends.
I hope she does well moving forward and her cancer just stays put away and out of site.
All best,
Janine
Reply # - February 22, 2017, 11:42 AM
Hello Janine,
Hello Janine,
I don't think the second opinion is an option as we are using the health facilities of the UK on an EU arrangement, so it is very nice to hear your opinion. We are taking every day as it comes and as months pass have greater hopes that the cancer will not show. I do not know how confident the doctors were in saying the bone damage was sclc, but it seems eradicate now. Our worry now is political as England is leaving the European Union, we are not sure if our health arrangements will remain in place. So if something does arise we may end up going back to Holland. Thank you.
Kev
Reply # - February 22, 2017, 02:40 PM
Check with your wife's doctor
Check with your wife's doctor about a 2nd opinion or specialist consult, I'm not sure of the terminology. I don't think they are out of the question. We've had a couple of members who were in the UK and got them. Also I think the UK has it's own healthcare system so the break from the EU shouldn't have any consequences for your wife's healthcare. All of this is said with an underlying understanding that I've never personally dealt with the system y'all are in. by the way y'all is a conjunction for 'you all' and is a southern (US) term for making "you" plural because evidently we like to distinguish singular you and plural you.
If I were you I'd ask for clarification on the cancer diagnosis on the leg. It could answer a lot of questions. It's also possible to have the tissue (which still exists somewhere) looked at by another pathologist.
Reply # - February 23, 2017, 07:50 AM
Hello Janine,
Hello Janine,
Once again thank you for more information. I have been looking at two UK sites for cancer support, they do not tend to have professional advice givers but are patient discussions. One is called MacMillan and one is called Roy Castles Lung Cancer Foundation as part of a site called Healthunlocked. On these sites there are recent discussions from patients who carried the symptoms for years without detection and then got diagnosed with small cell lung cancer. As there is no moderation on the sites I was trying to establish if these are likely cases or frequent occurring? I was looking for options on secondary opinions but left the websites more worried! They also talk of people with a clear CT scan being later diagnosed with lung cancer. This was new information to me.
Sorry for more questions.
Kev
Reply # - February 23, 2017, 08:34 AM
Hi Kev,
Hi Kev,
I've heard of people who are worried they have undetectable sclc and point to some cases documented somewhere. While this may be a rare possibility or a newly found precursor I have no idea. I will ask one of our faculty to respond.
I'm so sorry you are more worried now, as if that's even possible...I imagine.
Janine
Reply # - February 24, 2017, 12:28 AM
Hello Janine,
Hello Janine,
Yes you are right, we are all so worried it is difficult not knowing what is wrong. It is very considerate of you to ask your facility to help, so thank you. We understand that you cannot give medical advice and we would not expect that. We talked last night and looked all over my wife's test results. Nothing jumped out as being alarming, her sodium level has been low on occasion but never under 129 units. We think she started to feel not quite right in 2014, but we put that down to our move. As I reflected on earlier, some of the UK site forums talk about people feeling ill for over two years before getting a diagnosis of small cell carcinoma, but as I spoke earlier, the forums are not moderated. Our general question remains to ask if the following are still best views.
Don’t forget that cancer progresses, so it isn’t typically extremely difficult to find after two years of cancer-related symptoms.
And this one from Dr Goodgame
As Dr West’s said, the fact that you have not felt well for two years, almost certainly means your symptoms are not from cancer.
I found them here
http://cancergrace.org/forums/index.php?topic=9521.msg75443#msg75443
I can also add again that my wife has had Xray of chest, CT scan of Chest and abdomen and most recently in November a body PET which appears to have included a CT.
We send our best wishes and thank yous for being so helpful.
Kev
Reply # - February 24, 2017, 08:25 AM
Hi Kev,
Hi Kev,
I would agree with everything that Janine has said. Though cancer can be unpredictable and you can always find examples of unusual sets of circumstances, it really is true that a cancer that not only is producing symptoms but also has spread distantly to a bone would almost certainly appear on either a CT or PET scan. The problem with treating an unseen cancer is that you have no idea whether the treatment is helping or even necessary.
If a second opinion is not possible, perhaps you could simply start a new consultation with an internal medicine doctor, seeking an explanation for your wife's symptoms, letting the internist know that there may be doubt about the SCLC diagnosis. I can't see any reason that wouldn't be covered.
JimC
Forum moderator
Reply # - February 25, 2017, 01:50 AM
Hello Jim,
Hello Jim,
Thank you for adding. The point we are trying to resolve now is, how likely is it that all my wife's symptoms could relate to sclc if we discount the bone issue that we have questions over? As we hear other unmoderated sites mentioned earlier talk about people having symptoms for two or so years without the small cell revealing. This site, the only site we know with experts has said
This one from Dr West
Don’t forget that cancer progresses, so it isn’t typically extremely difficult to find after two years of cancer-related symptoms.
And this one from Dr Goodgame
As Dr West’s said, the fact that you have not felt well for two years, almost certainly means your symptoms are not from cancer.
I found them here
http://cancergrace.org/forums/index.php?topic=9521.msg75443#msg75443
Do these statements apply to small cell?
My wife is still very tired and fatigued so we will keep going to the doctors but needed to ask if we are at a stage where we should be looking for alternative reasons for her symptoms?
Hoping I have made sense here? And sorry if there is something I keep not understanding.
Kev
Reply # - February 25, 2017, 04:25 AM
You don't say when she had
You don't say when she had the radiation to the bone. Are they still scanning? Did she have a brain MRI?
I'd have her thyroid checked if she's still feeling fatigued. Those are the two I'd do if it hasn't already been done. Take care, Judy
I am a LC survivor and advocate for LC patients. I'm not a medical professional and all responses are my own opinions based on research and advocating.
Reply # - February 25, 2017, 07:09 AM
Kev,
Kev,
I'm sorry for the confusion if I didn't directly address your question, but those quoted statements do apply to most any lung cancer (there are some, such as BAC, that can be slow-growing), and if anything more so to SCLC, since in almost all instances it grows rapidly. In your wife's case, if the bone lesion is SCLC, that would mean that lung cancer cells have entered the bloodstream and we would certainly expect it to appear elsewhere by now and be progressing quickly. In addition, we would expect her symptoms to be worsening over time. So I think it would be a good idea to pursue other possible causes.
JimC
Forum moderator
Reply # - February 25, 2017, 10:14 AM
Hello Judy and Jim,
Hello Judy and Jim,
The confusion is down to my imprecise language and trying to read the medical notes is not easy. To clarify Judy, my wife had radiation to her leg in beginning May for what was likely small cell carcinoma. I say likely because that is written on the medical report. Again the wording on the CT talks about no significant lymphadenopathy, so we can only assume it is clear too. She has had no chemotherapy and a PET scan with CT in it said no evidence of malignancy, so we are confused but also worried. Trying to speak to the specialist doctors is hard as we have no time with them, the nurse tries to help but it sounds like we are an unusual case. When we look on two UK websites for cancer support we worry more as there are some recent conversations from patients who had long time symptoms and negative xrays and CT scans but were eventually diagnosed with small cell lung cancer. Maybe we do not translate the posts very well? Reading elsewhere we find small cell lung cancer is very aggressive and symptoms are normally only for weeks or small number of months before diagnosis. It has been good of you to accept us onto this site and give us the clarification. So thank you.
Kev
Reply # - February 25, 2017, 01:11 PM
I'm not sure where she's
I'm not sure where she's being treated, but if possible I'd get a second opinion. I've seen some of those posts that say I had symptoms of SCLC for several years, but this is not usually the case as Jim has noted. SCLC is aggressive and would most likely rear its ugly head sooner rather than later. Hope she feels better soon.
Take care, Judy
Reply # - February 25, 2017, 01:30 PM
Hi Judy,
Hi Judy,
I do find it difficult to work through the information given from other sites and like that this site has such knowledgeable people to help. as of now we have no more treatment planned. We did speak to another specialist doctor but not for a second opinion but advice, he said that without anything showing on a scan he would have to remove lungs to look for a reason for the symptoms. Forgive this last statement I know it does not sound good but is a straight translation that shows you the language does not always travel well.
Do you think the peoples symptoms were not related to their cancer diagnosis then?
Kev
Reply # - February 26, 2017, 06:15 AM
Do you mind saying where she
Do you mind saying where she was treated? You say you're in the states now but not from here.
Take care, Judy
Reply # - February 26, 2017, 09:10 AM
Hello Judy,
Hello Judy,
We are in England, but moved here from Holland on a long term stay to be near our daughter. Sorry if I have mixed things up.
Kev
Reply # - February 27, 2017, 08:46 AM
No mix up from you, it was
No mix up from you, it was mine. Sorry! The UK does things differently than the US, so it's hard to know what to say sometimes. I'm on a support site that has many UK lung cancer patients and many things are different. All you can to is watch for any new symptoms and follow-up as soon as you can. Wishing you all the best. Take care, Judy
Reply # - February 27, 2017, 10:41 AM
Kev,
Kev,
I see we haven't had a doc respond yet. I'll work on that but want to clarify first. Did the pathology report state a definite diagnosis of cancer? If so did it definitely state or suspect it was small cell carcinoma? I doubt UK healthcare would treat as cancer without a pathologist's diagnosis. Certainly in the US a biopsy is needed in all but the most dire and obvious cases to begin treatment.
Hope this all a moot point.
Janine
Reply # - February 27, 2017, 11:19 AM
Hello Janine,
Hello Janine,
When I looked at all the hospital letters the wording is very vague and I think the report from the first scan said the area was suspicious and a biopsy was required. The biopsy has wording saying with sign of small cell carcinoma, so I don't know if sign of small cell means conclusive or not? The last scan did not show any indication for malignancy.
Thank you again.
Kev
Reply # - February 27, 2017, 01:12 PM
I think I'd want to get
I think I'd want to get clarification on the diagnosis or there lack of. If there was no conclusive cancer diagnosis from biopsy then I'd think twice about the cancer diagnosis in the first place. A scan can only suggest cancer a biopsy under a microscope then chemically tested are the only ways to know, fist, under a microscope if it's cancer and 2nd, further lab testing what type. Perhaps the path reports cancer with the type not sure? The answer is with the biopsy tissue. You can get clarification and or have the tissue retested. Other than that I'd go with Jim's suggestion and see a primary care doc for a thorough work up and discussion about what is and what may have been.
Reply # - February 28, 2017, 01:02 AM
Hello Janine,
Hello Janine,
Thank you for giving us more information. I have read some of the letters and it is just too complicated for us. So we are going to see another doctor soon. We were definitely told it was small cell carcinoma but as we spoke earlier the letters are more vague. I might see if our daughter can make copies of them on the computer. The technical bits suggest small cell carcinoma because hyperchromatic nuclei with faint cytoplasm. Also histopathological evaluation positive for undifferentiated carcinoma.
I will let you know when we find out more.
Kev