While the forum discussions have been up to now primarily devoted to helping those who are newly diagnosed or currently in treatment, we have been monitoring and are aware that an emerging group of people need to share ideas and support; those lucky enough to get through their cancer experience with successful treatments, and who now, many years out from treatment, are having complications related to that treatment.
To provide some ideas for the discussions in this forum, I will put a few posts up over the next week that look at my own experiences as an example. We all know that the treatments that we endure have consequences, and that still being on this side of the grass 5 years, 10 years, or more out is a blessing... but be assured these treatments have consequences of their own. And our treatment facilities and our oncology professionals are not so concerned about us years down the road. We can talk about why this is as well.
My personal list of complications at 15 years out from the completion of treatment are; acute xerostomia, dysphasia, carotid artery stenosis from radiation induced scar tissue, esophageal stenosis, loss of ability to control the right side of my face and mouth, bario-reflex disfunction, sleep apnea from mucous secretions, and more. Some of these are seriously life altering, some are aggravations, some are simple coping adjustment things to deal with.
Before I start on some of these let me relate a quick anecdote about a conversation I had with my radiation oncologist Dr. Kian Ang who we recently lost to cancer. We were at an oncology conference where we were both speaking, and having his ear for a while, I decided to rail on him about a litany of complications that his treatment had left me with more than a decade out, and which had nothing to do with my cancer. Patient ever with my long windedness, Kian listened quietly as I went through the quality of life issues, and serious medical issues that I faced as a result of our original time together. 20 minutes into the conversation I had the main topics out and was ready to detail things further. Kian stopped me. He said "Before you continue, I just want to ask one question Brian, is it completely lost on you that you have to be ALIVE to have these complications?" Well, that clearly put things in perspective for me. It could have so easily turned out very differently, with me on the other side of the grass all those years ago. I am so very thankful to be here today, and to have bought with those difficult treatments a decade and a half which I feel I have put to good and meaningful use. So as you hear about my issues, please do not think that I am lacking in appreciation of how lucky I am, nor my taking any of it for granted.
I will start talking about the one that is little understood, and often difficult to diagnose, bario-reflex disfunction. It essentially means that my body's ability to control my blood pressure and my heart rate, has almost completely become non functional. This has consequences which can be life threatening. It is a result of of radiation to a small group of micro nerve fibers that are located near the carotid artery notch, and who are tasked with sensing your blood pressure and telling your body to compensate up or down as they do. Sitting still, my blood pressure can go from a dangerous 160 over 115. to 90 over forty all in a matter of minutes. This is real fun and the long-term consequences of it are scary. This started about year 13. More later.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
I also have dental issues 8 years later, which are different than the issues I and others had while going through treatment. Having a separate forum to discuss these and other long term issues is a great idea.
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
Thank you, Brian. This new forum will be an excellent resource and "shoulder." I think that newly diagnosed patients and those who have completed treatment in the past several years will also benefit from long term survivor stories.
I too am thrilled to be here now to share, but in retrospect I do wish I had pushed my RO to discuss potential long term effects of my radiation. When I asked about long term effects I was stopped short by his answer, "We're here to save your life." That he did and I am forever grateful, but that does not negate the challenges of living now with the long term effects. Had I known then what I know now, I would have moved forward with treatment and started research into how I might forestall future radiation-caused maladies. I do know that many, if not all, effects might have occurred anyway, but I would feel better now to know that I had done all I could or was willing to do to prevent their occurrence.
I look forward to participating.
Be well. Zenda 12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
I really appreciate this new forum, too, as my husband is having a number of issues that are results of radiation and subsequent surgeries (no recurrent cancers). Once you get through the 5th year, you are somewhat on your own. For those who have the good fortune of being long time survivors, finding solutions to these issues is frustrating. This is new territory for many doctors.
It will be helpful to learn about others and how they cope and also have some ideas on what MIGHT be on the horizon. Thanks for starting this, Brian!
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
Brian, it sounds like you've been through the wringer. I am curious about your barrio-reflex dysfunction. I received a diagnosis of dysautonomia which is similar but extends to all autonomic nervous system functions like digestion, breathing, insulin mgt, protein synthesis, hormone loops, muscle tone, bp, heart rate. I have never had tests that confirmed but everyone points back to brain stem issues from radiation fibrosis. I also have damage to one lung causing extra secretions like cystic fibrosis.
I think the unbelievable part of all this is the doctors incessantly ignoring the symptoms and chasing a diagnostic code. The truth about widespread fibrosis/nerve/vascular damage from radiation causes very sporadic or random problems throughout the body. I am happy to be alive and I did sign all releases knowing there were risks but I also believed there was an underlying assumption that the people subjecting me to the risks also had experience and a plan of attack long term.
I have found the concept of "aftercare" is more of an afterthought. I have tried to encourage aftercare centers much like what the Livestrong Foundation was helping get started with their Centers for Excellence and to some degree the Livestrong at the Y program. Having such recovery oriented centers could be staffed by NP's or some PA's with kinesiologist type therapists/doctors to work on getting all the biomechanics re-established from the destruction of soft tissue throughout the body from chemo and radiation.
Yes tear me down and kill the beast but please...help me build back up from all aspects of life.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
One of the issues that Alex and I face is that we have been "cut loose" from the health system 3 years out from treatment, so that when we go for the obligatory 6 month check up the specialists are only interested in examining Alex for recurrence and have no interest in hearing about the issues that need addressing. To add insult to injury, the RO infers that Alex should be thanking his lucky stars that he is alive and that these issues are inconsequential compared with what could have happened. The RO also shuts Alex down by inferring that his issues are unusual or unrelated which makes him feel like a whinger or a hypochondriac.
Consequently, Alex has just stopped mentioning it which of course is exactly what the RO intended and does not help Alex's situation.
Alex is still horribly underweight, still unable to eat solid food in any meaningful way, remaining teeth have now all fallen out or broken off, fatigue is still an issue, he oscillates between "foam" and "desert" in terms of saliva, and has intermittent pain from peripheral neuropathy.
The problem seems to be that no one will take on these adverse events and try and solve the issues. The oncology guys (ENT, RO and MO) think their job is done and the general physician and regular dentist don't feel they are qualified to deal with it. Access to speech pathologist, dietician and oral surgeon is severely limited and we are in line behind the people currently undergoing treatment who are in more desperate need. Whilst we understand this, it is very frustrating and I notice Alex doesn't even try to talk to them anymore (we see them on "group hug" day every 6 months). Not a good way to address the issues.
At least an opportunity to discuss issues here will give us an opportunity to explore possible solutions whilst not feeling like freaks or complainers.
Having said all that, I don't think we can input much to your issues Brian but would love to hear how you and others manage your issues so that in the future, we at least have a starting point that isn't behind the 8 ball to begin with.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
This really is a great idea, Brian. The long term effects of surviving cancer do not seem to be anyone's specialty in the medical field but they are issues that need to be addressed. And it seems that this is the best place to start - with those survivors who are currently experiencing it. It would also help caregivers, to have some idea of what might be ahead, health-wise and how to cope with it. Every time my son has some health issue I have to wonder how it might be connected to the after effects of his cancer treatment.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
WOW Brian. This is exactly what I am looking for. After over 5 years, I'm experiencing things worse now than I did while having treatments and several years afterwards. It's bedtime now, but will write more and ask questions of others later this week. I think this type Forum will help me and others. I've written you, Christine, and Eric about some of my problems, and will have a place now for others who may have similar problems and can make suggestions. Thanks so much.
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer