The truth about Chemo... fact vs. fiction

Because I think this post may be found by more than my few (and greatly appreciated) regulars -- here's the background...

May 2008 -- Diagnosis of breast cancer -- small but aggressive lump in my left breast. Found by sonogram and confirmed by needle biopsy.

June 2008 -- Lumpectomy / sentinel node biopsy -- and then mastectomy because they didn't have clean margins. Results showed that the cancer was in the sentinel node, but not in the next ring of lymph nodes. In the end, the diagnosis was as stage 2b cancer -- with an aggressiveness rating of 3. The 2b indicates a total lump bigger than 2 cm and lymph node involvement. I had no evidence of metastasis..... and even an MRI in August showed no evidence of metastasis.

July 2008 -- I had a port installed. Counter to what I thought, it is completely under my skin. You wouldn't see it unless you were looking close-- it feels like a small, triangular lump under the skin about 4 inches below my collar bone. The purpose of the port is to save my veins, as chemo is very hard on your veins. Breast cancer patients have to be very careful with their mastectomy arm -- so they can't have blood pressures or any kind of IV in that arm -- so our 'good arm' can get into bad shape... Accessing the port is much less painful than getting an IV. They have a special needle that pokes through the skin and into a membrane on the port. The other advantage is that you really have use of both of your hands when you are getting your infusion...

General thoughts on breast surgery -- really, not all that bad. Sure, it is an incision that needs to heal. You'll probably have a drain or two, bandages to change etc. But, the surgery doesn't involve cutting muscles etc.. So your mobility isn't all that limited. You can't lift for a while and, like any surgery you'll need some time to recover. Since I teach college, I probably could have gone back to work about 10 days post surgery, if not sooner. I was off over the summer of my mastectomy, so I can't be more specific.

I do have a convex place where my left breast was. I have to be careful with my left arm, which includes no blood pressure or IVs on that side. I also have to watch for lympodema -- which is a collection of fluid on that side -- because they removed several lymph nodes, and it is the lymph nodes that regulate the fluid. I also can't wear anything tight on my left hand... so I need to get my favorite watch band adjusted and make my wedding rings larger.

July 17 I started chemo. The plan is to do four two-week courses of Adromiacin/Cytoxin (A/C) followed by 12 one-week cycles of Tomaxafin... (I don't know how to spell the drugs, sorry).

Currently, I'm done with the A/C. That was supposed to be the 'bad stuff'. Yes, I did start losing my hair -- which was kind of traumatic, until I shaved it off to stop the shedding... The list of possible side-effects were scary -- and I didn't get most of them.

--- Actually getting the chemo...

A typical appointment starts with a port access and blood draw. That only takes a few minutes. Then you see the doctor, with the usual fun of a weigh in, blood pressure and temperature. The doctor discusses your blood results, side-effects and anything else that may be going on or coming up. My doctor listens to my heart and lungs and does a quick breast exam and feels up my mastectomy scar. He also likes to talk about how I'm coping with life -- last time he found out that hubby was a national championship debater, which let him understand hubby quite a bit better.

Actually getting the chemo is probably the most boring part. The room looks like a kind of weird lounge. The room is large and has windows along the back. There are hospital recliners and IV poles at every station. You sit down, they hook you up, and you wait for the stuff to go in. Usually it takes a few hours to get all the anti-nausea drugs and the chemo drugs. When you com in, you are assigned a nurse who will change your drug bag, get you things and give you information about the drugs you are getting. My cancer center has a chemo class taught by the nursing staff -- it was very helpful, both in giving us an idea about what to expect AND because it let us know that the nurses are very knowledgeable about the process.

The Adromiacin is so caustic that it has to be infused by hand, by the nurse. They want to make sure that it doesn't leak in any way-- because it will erode the skin it touches... The chemo nurse sits with you and pushes it in by hand. All the other drugs get hung, either using a pump or just gravity to put them in.

For a while, I was on the same schedule as another breast cancer patient -- we had some really good talks about life and the world-- one week her daughter was there and we discussed the colleges she wants to go to, Harry Potter and a whole lot of other stuff. Sadly, I had to move to Fridays -- or I'd get to see her every week. I've had other good conversations with folks -- and I've really considered starting a book club --- we'd need to be able to have overlapping appointments and get to sit together, but I think it could be arranged :). Maybe it just takes someone who is done with treatment to get it up and running...

-- Side Effects -- Typically, people dread the side effects. TV shows people getting chemo as bald, pathetic and just lying in bed.. not so much for me. We took a vacation, I'm teaching full-time etc...

I did end up with some 'bowel upset' -- you don't need the details -- but it wasn't all that bad.

I did end up with taste changes. I can't eat spicy foods, because they tend to feel like they are really burning my mouth. I try to eat pretty plain foods, because I know that they'll settle better. I was fortunate not to get mouth sores -- but, part of that is probably because my chemo nurses had me suck on ice when they infused the Adromiacin... research shows that if the mouth cells are frozen when the drug goes in, the instances of mouth sores is significantly reduced.

I had very little nausea -- and no actual vomiting due to the chemo. They gave me a good anti-nausea drug via IV during my appointment and then there are two follow-up pills I took the following two days.

I did catch a couple of bugs -- a UTI and a cold, probably because my white count was a bit low. But -- they weren't any worse than had I caught them otherwise -- and my doctor proscribed a booster shot for my white count to be taken the day after my infusion -- so it wasn't all that bad.

What's coming up...

They tell me that I may get some numbness in my fingers and toes, and that it will be cumulative. Otherwise, they say this drug has fewer side effects than the other. They also said that my hair might start growing back, and after a while my taste changes will change back -- as the A/C works its way out of my system.

Long term, I'll have to have fairly regular scans for re-occurrence, but the 5-year disease free rate for my cancer is 85%. Since I currently don't have any observable cancer sites -- I'm pretty confident that I'll hit the 85% (knock on wood!!! Several times!!!).

I could have reconstruction, but I'm not all that sure I want to. I'm getting used to having one boob -- and as long as I can manage well with a prosthesis, I don't want to spend another summer or break doing surgery. Also, I'm fairly large chested -- so they'd have to do a lot of skin stretching first -- which can be painful and prone to infection.

My best bits of advice...

First and foremost -- get any new lump checked out. My hubby felt something unusual, I went to the doctor who felt the same lump and immediately sent me for a mammogram and a sonogram. Initially, neither of them showed a problem, but the radiologist looked around some more and found a different lump --which was the problem. He did a needle biopsy in the office, which showed the cancer. I didn't feel that lump at all -- but it was the trouble. Had I waited a few months, it could have been much, much worse.

If possible, go to a breast center for your follow-up care. I'm sure that is why the radiologist found the lump in the first place - because he was an expert in breast sonograms...

Second -- be comfortable with your oncologist. If you don't connect on an interpersonal level, you'll have a pretty long treatment -- and you won't feel as comfortable sharing important information with this person. They will, in essence, BE your primary care physician for the length of your treatment. You should see them many more times than you'd normally see your primary care physician.

Also, being comfortable with your oncologist also includes being comfortable with your cancer clinic. You'll spend a lot of time there, so make sure you like the energy of the place. It shouldn't be depressing -- it should be like any other good doctor's office. The staff should be helpful, knowledgeable and friendly. They should treat you like a person and not a number -- and you should feel that you can call them with questions or concerns.

Third -- if you think you have sleep apnea, get your sleep study and CPAP machine before you start chemo. After my first cycle, the anti-nausea drugs had me pretty sedated -- and I ended up stopping breathing and had a seizure. The only reason we can find for it is that my sleep apnea stopped me breathing and the sedation kept me from waking up like I normally did... The machine isn't bad at all -- it just takes a bit of getting used to...

Generally, don't be afraid of chemo. It is inconvenient, sometimes a bit icky, but otherwise not terrible. It will interrupt your life, but it also has a good track record of saving lives. The folks who really understand it, and who have been around a long time, see that the process has changed significantly in the last 20 years -- and that the common perceptions of it haven't caught up. Even when I saw other medical folks, they really didn't understand the realities of chemo -- and a few wanted to blame my trouble on the chemo, when it really wasn't applicable.