18mos after PCI, MRI is still clear but 64yo mom is in a wheelchair [c-SCLC, LD] - 1253267

armstrokd
Posts:7

Hello. This is my first-ever post! I have tried to do my homework; please forgive any faux pas or cringe-inducing misuse of medical terminology. The GRACE community is far + away the most dedicated, compassionate, and knowledgeable one i have found ~ it almost makes me a little shy to make my first post :]

Thanks so much in advance for any comments/suggestions concerning my mom's situation and how to handle it. My main Qs are (1) has anyone been through a similar experience, and (2) how to decide when to accept that there is no treatment for a given condition. Below is a description of her problems (special thanks to those who are sympathetic to the long-winded). [Disclaimer: my intention is not in any way to scare people off from PCI! I just really don't know what to do next.]

Kelly

Mom, 64yo, dx w/ c-SCLC (T3N2M0 / III-A / LD) in Nov 2010. She completed cisplatin+etoposide+thoracic rad (6660 cGy) 03|2011 and PCI (2500 cGy) 07|2011. 26 months post-diagnosis, we are thrilled + grateful that mom's MRIs are still clear.

But in late Spring 2012, mom started to experience vertigo, gait/balance problems, falls, and impaired vision. Despite PT, she rapidly declined from Sep to Nov 2012, and by Dec, she could no longer walk alone, stand up or sit down by herself, drive, or see properly. This month, she started using a wheelchair around the house. Fortunately, her cognitive difficulties are minor.

So far, 9 doctors/specialists are in agreement that the primary cause of mom's problems is damage to the cerebellum + visual cortex caused by the PCI. They maintain that there is no real treatment + suggest that her best option is in-home PT.

Mom is beginning to accept that she may be in a wheelchair forever and dependent on my dad to take care of her, but i am not ready to give up! I appreciate the immense challenges posed by cancer + treatment from a biological standpoint, but if there is someone out there taking a different approach, i aim to find them.

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Reply # - February 1, 2013, 01:43 AM

certain spring
Posts: 762

I am so sorry to hear about your mother. She must be very distressed at what has happened to her in so short a time, especially after having come through breast cancer. Having her in a wheelchair must be very hard to accept for all of us.
This definiitely sounds like one for a doctor with knowledge of radiation and its impact, perhaps Dr Loiselle?
It's great that you came here to GRACE - you're not on your own.

Reply # - February 1, 2013, 08:19 AM

armstrokd
Posts: 7

certain spring - Thank you so much for the kind words. It is still quite overwhelming to me that people who are dealing with their own terrifying, painful situations are willing to spend time helping, educating, and commiserating with others. It does feel better to be not-alone.

Janine - Thank you too. I look forward to hearing what Dr. Loiselle and/or others have to say.

Reply # - February 1, 2013, 03:36 PM

Dr West
Posts: 4735

Thank you for your very kind comments about GRACE. I'm very sorry to learn of your mother's symptoms. Dr. Loiselle may have a suggestion, but otherwise, I'm afraid that if anyone is likely to have good insight, it's more likely to be a neurologist than a cancer specialist. I personally don't have a suggestion of another strategy to pursue, and to my knowledge there is nothing with identified benefit here, but I would say that a neurologist would have a better chance of providing a definitive answer than anyone else.

Good luck.

-Dr. West

Reply # - February 1, 2013, 10:28 PM

armstrokd
Posts: 7

Thank you for your help and honesty, Dr. West. Although mom has had appointments with neuroophthalmologists and her radiation oncologist recently, she is still in communication with her oncologist from time to time. This afternoon, in fact, i learned that the oncologist emailed my dad to tell him about a new clinic opening in our state that will focus on radiation injuries.

If i may ask, do you know of any cases with trajectories like my mom's? In reading first-hand accounts online, it seems like people generally get through PCI fairly well, and we didn't know that there was a chance that the side effects could be incapacitating. I realize that everyone's response is unique, and mom may just be a special case. Still, is there a way to be sure that no mistakes were made? We requested and received her radiation clinic records just to keep them on hand, but there aren't any notes about any of her radiation sessions, only records of her checkups -- is this unusual?

Thank you again and have a nice weekend.

Reply # - February 2, 2013, 02:25 PM

Dr West
Posts: 4735

It's definitely unusual, but I would consider it very believable. It's something we occasionally see, even if everything was done completely right, so I wouldn't presume that there was a major mistake with the radiation.

Ideally, there should be some documentation of the radiation that was administered, though it's often just a brief summary note of the number of treatments ("fractions") given, the dose per fraction, and the dates of treatment, with perhaps a sentence that the patient tolerated it well or had this or that issue along the way. Like many doctors, sometimes the documentation is good, sometimes it's pretty poor. Though I was tempted to say something borderline slanderous about my own radiation oncology colleagues, who I consider friends, I realize that some of the them actually do great notes, and others do terrible documentation; the exact same thing could be said for my own medical oncology group.

I think it's completely reasonable to ask the radiation oncology group in particular for some better documentation, which they may have kept a better record of for internal use even if they aren't good about notes for the overall medical record. If you intimated that there might be some legal inquiry made, or if a lawyer made them on your behalf, you migh well find that there's much better documentation to be had -- if not, that might be an indication that something isn't up to snuff (if records are so poor that they don't have any documentation of what was done, how can anyone be confident that it was done correctly?). However, if it appears on a review that everything was done right, then I'm afraid there might be no other explanation than a random very bad complication for no particular reason.

-Dr. West

Reply # - February 3, 2013, 01:51 AM

armstrokd
Posts: 7

Thank you for your insight, Dr. West. Some of our family is hesitant to press for more documentation for fear that doing so may introduce an element of unfriendliness or strain to the relationship with the radiation oncologist, but i think we can come up with a way to make the request diplomatically and without seeming accusatory (which we are not). I would just sleep better with confirmation that everything was done correctly, not only for my mom's sake, but for that of other patients as well.

Thank you again, not just for your time and answers to all my questions, but for creating GRACE and helping patients and their loved ones have the best knowledge and support they can to confront cancer and everything it entails.

Reply # - February 3, 2013, 03:55 AM

certain spring
Posts: 762

It's interesting to read Dr West's comment. I have some experience of hospital record-keeping being careless, although I should say I also have experience of people being extremely conscientious. I am glad you have already thought of requesting the records, and while I understand why you don't want to introduce any antagonism in the relationship with the hospital, I think it is entirely reasonable to ask for them. I also think you're right that it may help other patients in the future.
As a layperson, it strikes me that there are three obvious possibilities, of which we have covered two: a) the hospital made a mistake of some kind in administering the radiation; or b) as the neurologists have suggested, your mother is suffering from the radiation as properly administered. However I wonder if there is a third possibility, which is that these symptoms are indeed the result of the SCLC, but are not showing up on the MRIs for some reason. As I understand it, cancer in the cerebrospinal fluid can be hard to detect.
I hope it's not irresponsible to speculate about such a serious situation, but I can well imagine that you want to understand what has happened. If the problem is caused by the radiation, it's good to hear of this new clinic that may be able to help your mother. Sending best wishes to her and to you.

Reply # - February 4, 2013, 03:06 PM

armstrokd
Posts: 7

Thank you for weighing in, certain spring. Hopefully the clinic will be more forthcoming with additional notes. I certainly don't mind your speculation! I have posed some undoubtedly outlandish ideas from a physician's point of view to all of the specialists. True, i always want to know Why + How. One of my fears has been that mets are present but haven't reached the size threshold to show up on the MRIs. [At Oxford, they are developing a molecular MRI scan to detect brains mets less than 1mm in size - i read about this last year (http://www.oncology.ox.ac.uk/news/early-detection-of-brain-metastases-u…).]

As far as i know, the doctors don't think there is any spine or CSF involvement going on -- no metastasis, paraneoplastic syndromes, or infection. It's good to hear from Dr. West that the source of the trouble being relapse is highly unlikely at this point.

In December when i visited my mom, i asked her if they scan her spine during her MRIs; she said no, and that she believes the reason is that the likelihood of spread to the brain is much higher than spread to the spine or CSF. This is a little troubling, but maybe it's standard procedure. I will ask.

Last month at a follow-up with the rad onc, we asked if the LP from 6|12 should be repeated. The response was, to paraphrase, 'And if the test is positive, what could we do?' -- implying, nothing (in terms of the pnp syndromes). No one has suggested retesting for metastasis to the CSF; now i can understand why, in light of Dr. West's comment.

The oncologist has told us that pnp syndromes will only be present if the cancer cells are active, although i have read contradictory info at the Center for Paraneoplastic Neurological Disorders at the Univ. of Pennsylvania. Mom's symptoms are quite similar to "paraneoplastic cerebellar degeneration", but her LP was (-) for all antibodies. (Although the titers were not confirmed by western blot analysis.) There is no treatment for PCD anyway.

Reply # - February 4, 2013, 05:13 PM

Dr West
Posts: 4735

It is indeed not remotely standard to do surveillance scans of the spine, and I would consider that to be a very low yield approach. I've never heard of anyone doing or even thinking about doing that. Even doing surveillance scans of the brain is of questionable real utility, since there isn't a clear advantage to finding a problem earlier, but scans of the brain would have a much higher yield than scans of the spine.

-Dr. West

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