New Dx -- Reaching Out For Support
Hi, I'm Tom, and I'm very scared.
So, I've just got the initial diagnosis of CLL yesterday, and I'm reeling. I'm alternating between depression ("what's the point? I'm just going to get sicker and sicker, until I die...") and anxiety ("oh god, every new ache and pain is the cancer taking over!").
I am not religious, but I am blessed to have a patient and loving girlfriend/caregiver, as well as a bunch of silly dogs who love me like crazy and don't have problems snuggling when I feel scared. My social anxiety (resulting in almost no real world friends) is really coming back to haunt me.
The facts as I know them: I have had a "lump" on the right side of my neck which is palpable as swollen lymph nodes. I procrastinated/put off dealing with it for three years, almost; I first detected the swellings at the end of 2019 (I remember, because it's about when Covid hit big). As far as I can tell, the nodes didn't swell much more in that time. Fast forward to this year, when I finally got imaging leading to the excision and biopsy of a cervical lymph node.
Skip lots of medicalese jargon in the pathology report, but the bottom line is I have 4-5 very swollen lymph nodes in my neck, on the right side. As far as I know, all of my blood counts are normal so my stage would be... stage 1?
I'm 52, and other than being far too sedentary and overweight and needing to improve my diet and sleep habits -- I'm otherwise healthy. My only signs and symptoms, as far as I know, have been these swollen lymph nodes (and now, the fun side effects of living in almost perpetual terror).
I know nobody can make promises, and I know you aren't (for the most part?) doctors. I just want some reassurance that my life is not over -- literally (because the CLL will kill me in a month) or figuratively (because I can no longer travel, have fun, have a love life, any of that, because I'm going to be perpetually sick and/or hooked up to a chemo IV line).
...help?
Comments
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Oh, I should mention that while I don't understand the majority of the medicalese ("nodal structure effacement?"), I do recall that most of my mutations seemed to be of the "13q14.3" variety. Don't know if my liver or spleen are enlarged.
Day to day, aside from the anxiety (and, at the moment, the side effects of my surgical scar healing, which is including some edema which is really not fun either), I feel mostly ok...? I mean, I don't feel more sick and tired than usual. I have to visit the dentist to get some long-overdue oral healthcare, so that hurts a bit. And allergy season is kicking in, so that's unpleasant. And I have lots of symptoms from the anxiety itself, such as hot flushes, racing heartbeat, and so on.
Like I said, I haven't talked to the oncologist yet. But my rational mind (as opposed to my insane hypochondriac mind) says that this cancer hasn't progressed all that far... yet.
I just need a kind word or two, and a gentle reassurance that "this is not the end of the world" and "your life is not over."
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That's a bummer alpha. Welcome to the club that no one wants to be a member of.
I'm not sure if there are any pearls of wisdom to share that will relieve your anxiety. I have needed to see a therapist from time to time just to try and re-orient my thinking away from worry and stay in the present. It has helped.
I am not a big believer in diet and nutrition affecting the course of a blood cancer, but I do believe that general health, physical fitness, good diet, etc. can help with stress reduction and overall outlook, which may then have good residual affects on health. It's easy to say "f*ck it, I already have cancer, I'm eating at Shake Shack every day!!" but it doesn't really make you feel any better. Maybe worse. And who knows, you could have CLL for 30 more years and die of something else...try to avoid the something else from coming sooner than later.
Listen to your docs in terms of prognosis, and just go with what they say. I have struggled in doing this. It's generally not helpful to go down the rabbit hole of reading research studies related to your blood cancer. If you're like me, you hone in on worst case scenarios (I don't why I do that, it's messed up). If you're asymptomatic with a slow-growing blood cancer, that is about as good as it gets. If you don't have symptoms, it's a lot easier to compartmentalize the worry and hand wringing and just go on with the life you had before, as best you can.
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Well, I guess I'm not 100% asymptomatic, since I have quite swollen lymph nodes on the right side of my neck and jaw.
I know that diet and exercise are probably not the #1 controlling factor of genetics. I used to tell everyone (ironically, before diagnosis) that cancer is just a roll of the dice, for the most part. There's very little control over who gets it, the disease course (as long as you follow the doctor's orders, of course), and so on.
However, lifespan -- and more importantly, healthspan -- are hugely impacted by diet and exercise. Even if getting on the exercise bike isn't going to save me from cancer, it might save me from pneumonia I caught as a secondary condition of the CLL. So, it's good to do.
And exercise (and to a lesser extent, diet) are huge when it comes to managing depression and anxiety. With diet, mostly it's just eliminating caffeine, but exercise can stop a panic attack in its tracks. Plus, exercise can help significantly with lymph drainage.
It is quite likely -- probable, even -- that CLL won't be the direct course of my death. Especially since it seems like I may have had it in indolent form for a long, long time, so after a round of treatment, I may have another 5-10 years before I have to deal with it again.
I wouldn't say I'm feeling "good." I just got off the phone with the doctor and I have my initial onc. appointment this Thursday, after a blood draw. I'm relatively sure that the news I'll receive is stage 1 or 2 CLL, most likely something I've had in an indolent state for a while, but which "something" activated. Recommendation will probably (?) be a round of chemo, possibly followed by radiation (since this is all targeted in my neck and jaw, that seems like maybe it's a candidate?), and then.... watchful waiting. Which may be the hardest part.
Thank you for reaching out. You're right; I don't want to be in this club. And I'm glad I have the emotional support of my girlfriend, etc. But... they don't have CLL, so can't really identify what I'm going through...
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Where did you get the idea it was CLL and not something else? Was that biopsy sent to the lab or was it just looked at internally? A firm diagnosis requires a biopsy by a certified lab. Stay strong. Whining will not help so try to get beyond that.
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Because the pathologist said it was CLL…? Not sure how reaching out for emotional help is whining.
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alpha,
CLL is highly treatable in most cases, IF you have it at all. I do not understand your line about 'I'll be dead in a month.'
Until your diagnosis is confirmed by competent authority, and you have been assessed by a medical oncologists, you can't really even know if you have serious cause for concern. Most of the people here have been dealing with confirmed cancer for a decade or more. We have learned to live with cancer, rather than 'dying from it.' Fear is counterproductive and (usually) not really justified.
Your sentence structure is distinctive and sounds very familiar to me. Have you ever had occasion to write here before ?
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Alphasimian
Sorry if I offended you. Its just that something about your post that seems less than authentic. And your moniker is suspect. All sorts of weird stuff on the internet. First off CLL is indolent. Secondly it is not lymphoma though it does lie in a somewhat gray area. You are not going to die in a week from it. My son’s father in law has had it 15 years and keeps it under control with mostly oral drugs. Chronic means it comes and goes so be ready for that.
Please accept my apologies. I wish you well.
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No worries; I was taken aback, that’s all. It seems like my speech patterns triggered some folks and I apologize— this is just how I type.
When I said “newly diagnosed with SLL,” what I mean is that both an initial pathologist and now my oncologist have looked at the results of the biopsy and have said things like “consistent with SLL.” Thus, even though I’ve never sat across from an oncologist who said “you have SLL,” it seems extremely likely that that’s what I’ll hear.
I suffer from depression and anxiety, so on top of whatever this cancer is doing (I’ve had it for who knows how long, and I noticed a lump in 2019, so that gives you an idea of how aggressive this is). So mostly I was reaching out for reassurance. Every ache and pain, twinge and shiver now, my crazy brain says “it’s CLL, and it’s spread to all your internal organs!”
If my lighthearted attempt to poke fun at my own anxiety offended anyone I am truly sorry. I’m just trying to get through my impending cancer diagnosis and treatment without having a nervous breakdown…
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Also my suspect name is just a handle I’ve been using since as long as GMail has been around — it’s just a joke, calling myself king monkey…
I’m Tom, a 52 y.o. computer programmer from Seattle. I had swollen lymph nodes in my neck which I buried my head in the sand and ignored since 2019. Fast forward to recently, when I have insurance again…
I finally agreed to go under the knife a bit over two weeks ago, and they excised a nose on my neck, below my ear. Unfortunately there are several more swollen nodes in the area…
The initial pathologist basically said that “this looks like an indolent cancer, consistent with SLL.” My (new) oncologist looked at it and basically agreed with the first report — looks like CLL/SLL. Now my first official sit down with my onc. is Thursday, but I’m pretty confident I’ll hear a diagnosis of CLL.
Staging is next, right? So my best guess on Rai staging is stage 1. It’s not 0, because I’m not asymptomatic — I have swollen lymph nodes! But I don’t feel tired or especially sick or whatever. I don’t know what my blood counts will be.
So, even if I get a much later stage, my understanding is that CLL itself is manageable— no fun, but manageable.
But my depression and anxiety are, in a weird way, my biggest enemy. It was anxiety that led me to bury my head in the sand for 3+ years, so it’s not “just” unpleasant feelings, it can cause real world problems, too; right now I don’t feel like getting out of bed to do ANYTHING— that’s depression.
So the main reason I’m here is for support. I need to hear more stories about people leading long, otherwise happy lives with CLL, because one of the crazy voices is telling me that my life is “over” because of this…
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Hang in there! Glad you are reaching out to others. One reason I remarked as I did was that after my initial CT scan the radiologist used exactly the phrase - “consistent with CLL”. However after the biopsy from hell (10 days in hospital) and a Bone Marrow Biopsy I was diagnosed with stage 4 Follicular Non Hodgkins Lymphoma (FNHL). You have some excellent care available in Seattle. Good luck and hang in there. Don’t pre-suppose too much. Wait for the actual results. Have a great weekend.
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Thank you. I’m not a religious guy, but I am grateful that Seattle Cancer Care Alliance and the Fred Hutch are right around the corner. I can’t imagine what it’s like to have to fly across the country for all this…
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The "C" in CLL stands for "chronic." That means time. Which is good. It indicates that the disease is slow growing and that you have probably had it for months or even years. It also tends to indicate that this is a condition that you live with, rather than one which you die from. It is very treatable and advances are continually being made against it. It is the same disease as SLL - Small Lymphocytic Lymphoma, the difference being where they appear. CLL is normally in the marrow and blood, while SLL is in the lymphatic system. Thus, if you have nodes involved, it would "seem" like it might rather be SLL, but same difference as the mutated cells are identical.
If you are in the US, I would strongly recommend that you consult at a National Cancer Institute designated comprehensive cancer center. They possess cutting-edge technology, employ the best and brightest and conduct research via clinical trials. You may already be at such a facility, but you can know with certainty by searching here: https://www.cancer.gov/research/infrastructure/cancer-centers/find
The Leukemia and Lymphoma Society has tons of resources, as does the Lymphoma Research Foundation (under SLL). Knowledge is power and the more you learn about your condition, the more you may interact with doctor and make informed decisions.
https://www.lls.org/sites/default/files/2021-08/PS48_CLL_Guide_2021.pdf
The human organism is both physical and spiritual. Your body is treatable but the spirit also suffers, as you have well noted. Dealing with anxiety is a major concern, as anxiety is capable of producing over 100 of the 150 symptoms our bodies are capable of generating. Signs of physical illness without any associated illness actually being present. Have a look at how anxiety (stress/nervousness) can affect you. Scroll down this page and it might just amaze you:
https://www.anxietycentre.com/anxiety-disorders/symptoms/
There are forms of therapy for dealing with anxiety, the most popular (Cognitive Behavioral Therapy) being drug-free. As well, every culture and age has developed methods for dealing with the stress of life itself, as well as illness. Psychology, cultural practices, medication, contemplation, prayer, physical programs, you name it. Now is the time to search for one that "fits" and is beneficial. Do not be disappointed if one method is not for you, as there are many others to try. We are well-advised to be ready to try plan B,C and D, if necessary.
Practically, as serious as this is, many of us here have received far worse prognoses than you have received. I have 15 years into this, and I was given virtually zero chance of survival. PROGNOSIS. As to prognosis, it is the first thing asked about and the last thing that matters. Prognosis is a mathematical construct to aid in medical decision-making, but reflects only averages, and you are not average. Prognosis applies to patient groups, but not to any individual, and especially not to you. You form you own prognosis by actively diving into the battle, learning, developing a positive attitude and even taking some risks.
You may feel alone, but you are never alone. You have loved ones who love you in return. They share what you are going through and now is the time to listen to them, learn from them and even lean on them. Be aware also that you may feel suffocated at times by the attention. Let them know when you need some solo time. It all can be overwhelming, but we are given one day at a time to live. For the time being, you might consider abandoning thoughts of the distant future and focusing on the next 24 hours. We are always here for support, and your medical facility can also be a great resource.
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Thank you for all that. I do objectively know that CLL/SLL/whatever is one of the most treatable cancers. I also know that, despite having lymph nodes swollen for 3+ years, I got lucky to get such an indolent form of cancer (if this had been melanoma or pancreatic cancer this would be a different conversation).
My mental health is definitely going to be the biggest part of this battle, so I don’t give in to depression and anxiety and bury my head in the sand again.
Your advice on focusing 24 hours at a time is spot on, I think. I’ve started doing some thought stopping exercises when I find my anxiety brain running away from me, but it’s too soon to tell if they’re helping yet.
My only frustration in this has been that the doctor seems to be hell bent on a cancer diagnosis. At this point, with two pathologists looking at an excised node yeah, I’ll bow to authority. It was just frustrating that he seemed sure it was cancer even before cutting me open…
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Actually, seeking out information is one of the ways I cope — I will never be one of those “just tell me what to do” folks, but it’s also important to know when to accept expert opinions.
That being said, I do have a habit of projecting way too far into the future, and I think that the advice to focus on 24 hours at a time (while still keeping a game plan, naturally) is spot on.
It’s a typical spring day in Seattle — rain, clouds, sun and wind. The dogs are playing in the grass and my chores are done.
I’m going to binge watch some cheesy videos and figure out what to do with the rest of my day.
For today, that’s enough.
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As to our manner of thinking, an outside opinion is excellent to ponder, as we need a second or third set of eyes on our cognitive processes, as we easily lead ourselves astray. Our poor cognitive habits can be corrected by unlearning them and replacing them with more productive patterns of thought. That is precisely what Cognitive Behavioral Therapy - the gold standard - teaches.
Are you at Fred Hutch? I went there in May 2008 and have been back hundreds of times since then. Had I not gone there, I would have expired in 2009 at the latest.
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Tom
I have been thinking about my posts to you, hoping I did not discourage you. I was watching a movie called “After Earth” on Netflix. I was very impressed by a statement by Will Smith to his son who was in a very dangerous situation. Here it is.
"Fear is not real. The only place that fear can exist is in our thoughts of the future. It is a product of our imagination, causing us to fear things that do not at present and may not ever exist. That is near insanity. Do not misunderstand me danger is very real but fear is a choice." ― Will Smith
I tell my kids and grandkids to “stay calm and return fire”
I wish you well
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So the first visit to the oncologist was reassuring… and troubling. First: before ANYONE says anything like “don’t read medical literature” — respectfully, no. I soothe myself with knowledge. Ignorance is not bliss.
Dr. Khan went out of her way to reassure me that new targeted therapies for CLL (my formal dx) exist that are much more effective etc., that they are much easier to tolerate than “chemo,” etc. So… I googled, and I think we’re talking about Ibrutinib (sp? can’t remember the brand name).
This stuff apparently IS magical for CLL, and my extremely slow progressing CLL in particular. I’m a little concerned that the doctor made it sound as easy and safe as taking an aspirin, whereas the side effects include not just the possibility of death (to be fair, almost all drugs have at least a remote chance of killing you). But this stuff usually makes you anemic and/or prone to infections. Still easier than old school chemotherapy but no walk in the park. But even that isn’t a deal breaker — this is cancer after all.
No, the big problem is that apparently the out of pocket cost would be $18,000. A month. For the rest of my life. Oh, and if you discontinue therapy? The average survival is *eight months*. This doesn’t sound like such a sweetheart deal after all. See, I have… acceptable insurance right now, and I’m fortunate to have purchase Aflaac supplemental cancer insurance — which will help a lot.
But can I guarantee that for the rest of my life, or at least until I’m eligible for Medicare? Suddenly my doctor’s “don’t worry, be happy” tune is starting to sound a little off key.
Fortunately, I accidentally double booked oncologists, so my “second, first” oncologist appt. is on Wednesday this week. I’m not going to let them “soothe me,” this time. I want to know the exact planned treatment, what kind of side effects to expect, and what happens if I can no longer afford to spend _a quarter million dollars a year_ on this prescription.
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