Ask the cancer patient(s)

Miscellaneous and Personal Stuff I Must Share
21

I just told them – called my parents (who hopped in the car to drive 300 miles to see me a few days later) and told friends in person mostly. My parents were great. Mom had cancer years ago and her treatment was much harder on her than mine was on me, so she worried and fretted good and hard on my behalf, but, then, she’s like that. Dad got stoic and supportive – and he’s like that.

Extended family took to sending me flowery cards with lots of ornate calligraphy telling me how courageous I was. HATED THAT! What exactly the hell is courageous about having cancer? Is it the not-having-a-nervous breakdown you’re so proud of me about? Would a less courageous person just, like, die, or what? I never got that.

One uncle started mailing me Bibles and books by Billy Graham. :rolleyes: He knew I wasn’t interested before that, but I guess he thought I might change my mind if I was facing mortality. In truth Hodgkin’s has a very high recovery rate (between 85% and 90% for the stage they caught mine in) and while the chemo’s no fun, chemo for other kinds of cancer are generally worse. My oncologist said, once, “If you have to have cancer, this is the one you want to have.” I never really thought my life was in danger.

One of my closest friends got closer. She’d dealt with serious illness herself, which I think is why she was so great to me. She’d just show up with takeout or something, grab my grocery list off the fridge and come back with everything, talk to me if I was feeling good, leave me alone if I wasn’t, never any fuss about it, no soul-searching gazes full of sympathy and admiration etc. etc.

Another of my closest friends got distant on me. My diagnosis came at a very inconvenient time – she and I (and several friends) were planning a project together, and we were arguing about the schedule; I thought we needed to slow down, she wanted to hurry up. Then I had to pull out of the project completely to go do chemo, and the project had no choice but to stall while she found someone to replace me. I think she wanted to be mad at me, but you’re not allowed to be mad at cancer patients! Also, she had not ever been really sick and didn’t know how to be a sick person’s friend. She apologized for that some years later, after she had a very difficult pregnancy and came to understand firsthand.

Best of all was my then-future husband. He’d recently watched his mother die of cancer and I know it was incredibly difficult for him to face my being sick, too. We were having a bi-coastal courtship. He flew in to see me as often as he could afford to, which was every six or eight weeks, and talked to me every night on the phone. He went with me to chemo whenever he was in town. Now, THAT’S courageous. I lurve him.

22

Yes, thank Og for insurance. My chemo costs $85 every two weeks (two doctor’s visits and one prescription med to be taken before chemo) and I have small(ish) hospital bills I’m paying off…the highest was about $460. I don’t know if that’s all, or if there’s more coming in, but so far except for some tightening of the belt we’re doing okay.*

Keep the fingers crossed.

*I’m the one in the family who sweats the finances. Ivylad likes to pamper me. In fact, he tricked me when we celebrated Cancer Free Boobies Weekend. He asked if I wanted to go to Silver Springs or do dinner and a movie. It wasn’t until a few days later that I realized we’d done both!

23

I just got off the phone talking with my sister who is in the process of being diagnosed with cervical cancer. She just had her appointment with her oncologist, who sounded very optimistic to her. My sister had been having abnormal Paps for some years, with follow-up tests coming back clean, but this last series didn’t come back clean. In her great favour, she has been having the Pap tests more frequently than usual, and following through on all the slightly abnormal results, so there is great hope that it was caught very early. She’s going to tell the rest of the family now that she has some better information to tell them. We’ve actually lost a sister to cancer already (she died at 4), and my sister’s husband has also had Hodgkin’s lymphoma a couple of years ago.

We were just laughing on the phone over how she will tell people; people are expecting her to be announcing a pregnancy, and she’ll be announcing a cancer instead. She said something about not being thrilled if people say, “I thought you were getting fat,” and I came back with, “It IS a tumah!” Just because it’s serious doesn’t mean you have to lose your sense of humour, apparently.

Get your HPV vaccinations! Do what it takes so that young girls have a chance at cervical cancer free lives!

24

Another “Askee” checking in. I was diagnosed with breast cancer in 2004, when I was 34. I found the lump myself, accidentally, in the shower. I hadn’t been doing self-exams, and I was too young for mammograms. I started with chemo, then had a lumpectomy, more chemo, radiation, and a year of a preventative drug called Herceptin. After about a year of no signs and no treatments, they discovered metastases in my brain. In the last two years I’ve had two brain surgeries and lots of radiation surgeries. I’m currently doing chemo again, and crossing my fingers that that will be it.

My big pet peeve is the “cancer victim” thing, as well. “Cancer” is not code for “about to die” as every TV show or movie seems to think. People live with cancer, just like they live with diabetes, AIDS, or a huge host of less well known “life-threatening” diseases. It doesn’t mean you’re going to drop dead. Maybe you will, maybe you won’t. You have to adjust to all sorts of things life throws at you. You just get on with your life as best you can.

25

That’s what’s striking me about my sister’s diagnosis, as well. Sure, we would have preferred that no one in the family ever gets cancer, but it happens, you deal with it, and life goes on. You can die walking out your front door. You can’t live in fear of something happening. Of course, it’s not me staring down the barrels, either.

26

The biggest side effect is that the veins in my arms are trashed. When I went in to donate blood, they used to joke about how easy it was to poke me and fill a vial. Now, even the good phlebotomists have to do some digging to take a blood sample. In retrospect, maybe I should have gotten a stent.

I also can’t take as much caffeine as I used to. My doctor hadn’t seen that happen before. I used to drink a 12-pack a day of Diet Coke. Now 3 of them makes me dizzy. That’s probably a good thing, actually.

The chemo nurse told me this hits everyone differently. For me, I lost all of the hair on my head and everywhere else it just thinned out. There was just barely enough mustache to be worth keeping. Pubic hair and armpit hair thinned out dramatically, but there was still some there. It didn’t seem to affect chest hair (which probably wouldn’t be an issue for you :D) or arm/leg hair.

I called my brothers and said “I start chemotherapy on Monday.” I wimped out on most of the other family members and let my wife and brothers handle it. The tough one was telling the kids (16-year-old daughter and 11-year-old son). My daughter was pretty freaked out. My wife was even more freaked out. I found myself trying to keep everyone else calm, and it was a while before I could take the time to freak out myself.

I found out over the phone when I was halfway across the country from home. The whole saga of diagnosis was surreal, but I learned a lot from it.

27

From this cervical cancer survivor, HELL YES. As cancer diagnoses go, mine wasn’t so horrible, and I’ve had clean Paps ever since. (As far as that goes, I’d always had totally clean Paps before the diagnosis; apparently I’m a freak of nature.)

But can you imagine knowing that your cancer was nearly 100% preventable with a simple sseries of shots, and you hadn’t taken advantage of the vaccine? I wish it had been around when I was at the appropriate age to have it. Believe me, I’m all about routine checkups these days - that Pap may well have saved my life.

28

Ivygirl has had them, despite my sister trying to send me frightening e-mails…they haven’t fully researched all the long-term side effects!!!1!!11!!!1

29

That’s a fairly easy one to answer; the effects of untreated cervical cancer HAVE been well-researched - death. Painful, icky, ugly death. Or if you’re lucky, like we’re hoping for my sister, she’ll just need a complete hysterectomy before she’s had her kids.

I’ll take a vaccination any day of the week.

30

Gotta admit, the ratio of askers to askees in this thread kinda scares me.

Anyway, my dumb question is, how did you know you were sick in the first place? I’m sure I’m not alone in having some run-down periods in my life and wondering, “could it be? Naaah.” Is it blazingly obvious that something’s wrong?

(I realize that women are regularly checked for certain things, but guys, not so much.)

31

If the question isn’tmeant solely for the OP, I’ll take a crack at it. I felt absolutely fine,and went in for what I thought was a routine annual Pap, like all the others I had ever had, with everything normal. This time I wasn’t so lucky. The Pap was followed by colposcopy, which found cancer, and then a LEEP.

This is why I am a big fan of routine exams at recommended intervals.

32

In my case, it was found completely by accident. I had symptoms that suggested either PCOS* or Cushing’s syndrome (Cushing’s disease? One or the other.) and had a CT scan checking for Cushing’s, which found a mass in the kidney. Got referred to a urologist, who put me through an MRI which indicated it was cancer (urologist said I could also have a biopsy done if I wanted, but it’d be about 50% accurate, whereas the MRI was 90-something percent accurate). So, surgery was scheduled, they cut it out, and it turned out to be renal cell carcinoma. Wow, that sounds a lot simpler than how it felt while going through it.

(*Had an ultrasound in the middle of all this that led to a diagnosis of PCOS as well.)

33

I’ve had two unrelated primary cancers in the past three years; breast cancer diagnosed in May, 2005, and tonsil cancer in January, 2008. During the first week of this month I had my 3 year b/c checkup and 3 month oral cancer check, NED (no evidence of disease) in either of them.

My mother died of breast cancer so I’ve always been good keeping up with mammograms and doing self-checks. I discovered the tumor (2 cm), had the biopsy, tests and scans, and began treatment in June, 2005 for stage 2 b/c with no node involvement. Treatment was a sentinel node biopsy, lumpectomy, chemo and radiation. The last treatment was radiation on February 4, 2006.

The chemo I had prescribed was CMF, one of a very few varieties available to us, and fortunately for me one that has minimal hair loss. The range of hair loss with CMF is usually 20 to 60 percent, and my hair stylist figured my loss was even less than 20 percent.

I had a low white cell count only once and had the necessary injection; side effect was bone pain that lasted for about 2 days. I had fatigue, a sleep cycle that went from nearly no sleep at all immediately after the infusion to 12 hours straight of dead sleep right before the next appointment. My biggest side effect was ‘chemobrain,’ a kinda’ crazy-lady experience that was both fun and frightening; frightening because I often drove without knowing where I was. I arranged to have my daughter take my keys for the first 3-4 days after treatment. I don’t think I could have worked a 40 hour work week effectively, but probably could have handled parttime most days. I had no nausea (Atavan was my new best friend) but I felt flu-ey most of the time after the first 3 infusions.

The tonsil cancer began with a sore throat in December last year and after an antibiotic proved ineffective, I was sent to an ENT who made the diagnosis after a biopsy of a small mass (oxymoron!) where my left tonsil would be if I still had tonsils. Again, it was caught early as stage 2, no node involvement, no surgery, no chemo and only 35 zaps of radiation.

Although my mom died of b/c, I had far more fear of oral cancer, or head and neck cancer as it’s usually called. Radiation, no matter how precise the beam, can affect the salivary glands, taste buds, larynx, etc., and some of the surgeries sound (and are) barbaric: jaw removal, soft palate removal, partial and total tongue removal, and so on.

The radiation for oral cancer is particularly tough and I was prescribed 100 Vicodin at a time. I had 2 prescriptions filled and figure I probably took about 150 or so. You continue to ‘cook’ for about 3 weeks following rads, and it became very hard to swallow, produce saliva, taste anything – some things took on an entirely new taste, never a pleasant one. Oral thrush is another byproduct, similar to what b/c patients sometimes get and for which they are prescribed Magic Mouthwash. The rads fatigue is extreme – how about 16-18 hours sleep per day, dead dark sleep where you never move, turn over, dream, etc. The phone couldn’t awaken me and I had 2 alarms set to make sure I’d wake up the next day for the scheduled rads appointment.

I did smoke for years and quit only when I had breast cancer. Roughly 25% of oral cancers are unrelated to smoking and/or alcohol use. I was surprised that alcohol was a major contributing factor to oral cancer and am glad that I didn’t have that addiction as well as the smoking addiction. There isn’t much sympathy for oral or lung cancer patients as it’s a ‘lifestyle choice’ cancer.

I was diagnosed with b/c 2 days before Mother’s Day and was getting together with my daughter and s-i-l to celebrate. I didn’t want to hear “Happy Mother’s Day!” and then give them the news, so I waited until the following evening after she got home from work to tell her the news by phone. I began with, “Please sit down…” I spent most of the converstion reassuring her that I wasn’t going to die and making her feel better about what was to come than I felt sure of myself.

When I got the tonsil cancer results I called her saying, “Remember when I told you to sit down? I’m going to ask you to do it again.” Again, the conversation was me trying to make her feel better.

I told absolutely every single person I knew and a few I know only barely. I crept into a shell for two days and then phoned a few good friends and emailed everyone else. I think it’s easier to do this by email because our friends and relatives find it difficult to ‘say the right thing’ and I wanted to spare them that. I remember what a shithead I’ve been when others have given me their news – I spoke in platitudes and never really understood what they were going through. There’s a list of *10 Things Never to Say to a Cancer Patient * around here somewhere that I’ll try to find and post.

I’m in good shape now and surprisingly look pretty damn good too. Am sure there’s a Dorian Gray pic of me in a closet somewhere.

34

I wasn’t, that’s the scary part. I went for my routine physical Sept '07, my doctor said, “Well, it’s been four years since your last mammogram, you’re 40, time for another!”

I had it in Feb '08, got called back in March (that happened the last time I had a mammogram, so I thought nothing of it) but when the technician told me to wait and then took me back for an ultrasound I thought, “Hmmm…this is odd.”

I still don’t feel sick. I continued losing weight healthily, going to the gym, working (except for doctor’s appts.)

Routine exams. Get them!!!

35

I had “atypical” symptoms. I’d had really bad, unexplained hives on and off for a year, bad enough to make me look like a red-spotted alien when I has having an attack – the dermatologist just gave me a few steroid shots and turned me loose. Then one evening I had horrible heartburn after going out to eat with an EMT friend of mine; he told me to go get it checked out as it might be gall bladder disease, which is pretty easy to treat. So I went for a general checkup. The GP did all the standard peering into my ears and listening to me breathe stuff, but there’s that thing they do where they sort of run their hands over your neck? She found two lumps. Afterward I was flat out amazed I hadn’t noticed them myself; they were the size and texture of small grapes, sort of loose under my skin. I also had tumors along my sternum that should have been obvious. No pain with any of them. The GP got me in to see a surgeon for a biopsy the very next day.

So, get regular physicals. All of y’all. But don’t panic at every little thing, either, because ultimately it’s probably *not *cancer, whatever it is.

36

Many people don’t end up getting “signs” until they’re in later stages of cancer, and as many posters have mentioned, doctors initially think it might be something else and end up with a cancer diagnosis later. My mom was diagnosed last May with stage four lung cancer, which had spread to her bones, among other places. The only reason why it got diagnosed after nearly a month of her regular physician trying to figure out why she was having bone pain is because she had her yearly mammogram and they found breast cancer and ended up doing a set of full body scans, where they found the lung cancer.
She’s still going through chemo and did round #4 this week; sometime after the end of the month, she’ll get another full-body scan to see how treatment has been affecting everything. I’m just glad she went from “in a lot of pain, not eating and could barely make it through the day with naps” to “working full time, eating better and not napping as much”. I can’t even fathom what she’s going through right now.

37

Those of you who had cervical cancer, did you have a low immune system before that? One thing that my sister has had for years is catching every cold that went around - I think she must have about 12+ colds per year. Her doctors were never worried about her low immune system, but she thinks it might be related to developing cervical cancer (i.e. just about everyone has HPV, but not everyone develops cervical cancer).

38

My immune system is normally fine, but in the few years before the diagnosis, I’d had a bunch of unrelated medical issues (shattered leg bones and attendant surgeries and rehab and gimpiness) that may have impacted my immune response.

FWIW, when I asked my gyno how I could prevent a recurrence (literature is mixed on how long HPV can remain dormant in the body, or whether it can be completely eradicated), she recommended taking a folic acid supplement. I figured what the heck, I’ll just go crazy and take a whole multivitamin with folic acid, and a) all my Paps have been HPV-negative ever since, and b) it did wonders for my general energy level anyway.

39

A bit of a long story, but here goes…

Important piece of background information: I’m male.

I had a lump in my chest. A bit smaller than a dime. I typically didn’t worry about such things. I had a ranch with cattle and goats and barbed wire and I always had bumps, abrasions, lumps, cuts, and so on. Not a big deal.

Then one day I noticed it had changed shape. Now that is odd. And I have a male friend that almost died from breast cancer because it never gets diagnosed properly in men (he ended up having pretty much everything outside his ribcage removed from the sternum to the armpit – all the lymph glands, everything). So I went to the doctor.

My doctor said he’d never seen anything like it in over 20 years of practicing medicine. He referred me to a dermatologist because it was close to the surface. I set up an appointment a couple of weeks out.

When I saw the dermatologist, it was deja vu. He’d never seen anything like it, either. He asked if he could do a biopsy. I said he could cut the whole damned thing out as far as I was concerned. He removed a piece and said he’d get back to me. Still didn’t seem overly urgent.

I went to Las Vegas for a conference that weekend. I was in my hotel room when the call came in on my cellphone.

“Where are you?”

“Las Vegas.”

“When are you coming home?”

“Tomorrow.”

“Good. You have an appointment at 10:00 am Monday with an oncologist, can you be there?”

… long pause …

“Did you say ‘oncologist?’”

“Yes, that’s a—”

“I know what an oncologist is. What was that lump?”

“I’d rather let him explain it.”

The next 36 hours were miserable. My wife and I went to the appointment together. The doctor explained that it was lymphoma. It usually shows up in glands, but about 10% of the time it shows up in body organs. In my case, it manifested in my skin. He said he wanted to start chemo ASAP, and recommended monoclonal antibody treatments as well.

So if you’ve got a funny lump ANYWHERE on your body, no matter your gender, get it looked at!

40

Merciful Og, I am SO SORRY you found out like that! And you didn’t have a heart attack too?

I mean, there’s no good way, but some ungood ways are more ungood than others.

{{{InvisibleWombat’s past self}}}