Thursday, September 26, 2013

Next step: Chemo


Saw my Oncologist this afternoon and I’m ready to start Chemo on October 3.  It will take 20 weeks in total.
The good news is that the PET scan detected no spread of the cancer. That, taken together with the pathology report from the mastectomy means that it is highly likely that I am, at present, free of cancer. 

So why have chemo? Triple-negative breast cancer has a much higher rate of recurrence than other breast cancer.  It also has a high rate of redevelopment later as bone or liver cancer.  A recurrence is likely to be incurable.  Given the size of the tumor that was removed, my Oncologist strongly encourages chemo. . This is my second bout with cancer so I’m not going to press my luck any further. 

Chemo will keep me busy going back and forth for infusions and blood tests. I’m going to need a DayTimer again! 

I had an infusion port implanted when the mastectomy surgery was done.  I have a Bard Power Port 

There will be two stages.

(Go to if you want to know more about the drugs mentioned here.)

Beginning on the 3rd, and every other Thursday for 4 cycles (8 weeks) I’ll receive an infusion of Adriamycin and Cyclophosphamide, two cancer fighting drugs.  The next day I go back for another infusion that’s mostly just for hydration, but will also include Neulasta to help stimulate growth of white blood cells. In the non-infusion weeks, I go in for blood tests.

After that, there will be 12 weeks of weekly infusions with Taxol.

And they all have side effects.
  • I’ll lose my hair
  • Possibly have nausea or vomiting
  • Be fatigued
  • Possibly be constipated
  • Possibly have diarrhea
  • Possibly have both diarrhea and constipation.  One woman on a cancer forum I frequent said that she’d found herself having both.
  • ???

Oh well, the sooner it starts, the sooner it ends.  I’m eagerly looking forward to March, 2014.

Monday, September 23, 2013

Inquiring minds want to know: How does it feel to be missing one boob?

Mostly it doesn’t feel much different. Physically or emotionally.

It sure looks strange, though. 

If I were 20 years (or more) younger, it would probably have had a much different emotional effect.  When I was still conscious of my sexual image, this physical loss would have been more difficult to handle.  I’m very glad that I didn’t have to cope with it then.  But two months before my 71st birthday, sexual image is a just a memory.  I’m far beyond high heels, push-up bras, short skirts, etc.  The beach will never see me in a bikini again (and hasn’t for many years now).

But I do want to present a public image of normalcy.  I got my first “training bra” last Friday.  The first post-mastectomy bra is a very soft cotton affair that has pockets on both sides for a pad.  (It also has a pocket to hold my drain). The pad is very soft so as to not irritate the incision. So I don’t look lopsided. That eliminates any self consciousness Here’s a pic from a catalog.

Once I’ve healed sufficiently, I’ll graduate to bras that look like “normal” bras like this one.


These also have pockets on both sides. Instead of just a pad, I’ll have a prosthesis that has approximately the same look, feel, and weight as a breast. The prostheses come in various sizes so I should end up looking pretty balanced.

The good news is that Medicare covers the cost of up to 6 bras and 2 prostheses per year. 

Eventually I’ll also get a bathing suit that has pockets for my fake boob, but Medicare won’t pay for that.

The bottom line is that, everything considered, it’s no big deal.

Thursday, September 19, 2013

PET Scan

I had a PET (Positron Emission Tomography) Scan on Tuesday to try to determine whether my cancer has spread. Here’s a Wikipedia article:    I won’t know the results until my 9/26 meeting with my Oncologist.

Apparently a PET scan is different from other scans in that it detects changes at the cellular level.

And it is based on sugar.

I’d wondered at the prep instructions: a zero-carbohydrate diet the day before the scan.  And no caffeine within 12 hours before the scan. No exercise the day of the scan.  Here’s how it was explained to me.

Cancer cells are very fast growing; thus they need a lot of nourishment. At the cellular level, sugar is nourishment.   They want you to go in with relatively low blood sugar.  They also want your body to be as calm as possible, therefore no stimulants such as caffeine; and no exercise that would get your muscles active and looking for nutrients.

You get an IV injection of a sugar solution that contains a radioactive tracer. Then you rest for about an hour. Again, no stimulation: no reading, no writing – you just relax in a recliner in a dimly lit room. It takes about that long for the solution to circulate throughout your system.  

After that you are positioned on the scanning bed and the scan begins. Depending on the area being scanned, it can take from 30 to 60 minutes.  My scan was from base of the skull to my femur heads – took about 40 minutes, I guess.

I was relieved to find that the scanner itself is a relatively short tube with a large diameter so claustrophobia was not an issue.  You just lay there and let the bed carry you through the tube while it takes pictures of your insides.  Any fast growing cells needing nutrients will glom onto the sugar and its radioactive tracer and will show up in the pictures.

I’m not glad that I needed the scan but it was an interesting process.  I hope I get to see the pictures.




Post-Op exam ---- and some bureaucrat bashing

Saw my surgeon for the post-op exam. He says everything is looking good. The pathology report indicates no residual malignancy.  Made me very happy.

Your tax dollars at work:
Additionally, he told me that the pile of paper I got when I was discharged from the hospital is a Medicare requirement.  A hospital is obliged to present all of this “educational” material.  If the hospital does not comply, they risk losing payment from Medicare.  Some committee of bureaucrats has decided that I need education on quitting smoking even though I don’t smoke. 

There was a “Teaching Sheet” for each of my over-the-counter medications such as Glucosamine and multivitamins.  Each one has an opening paragraph that is nothing but a disclaimer stating that the sheet is a summary only and does not substitute for the advice of a physician.  Then the rest of the sheet is BLANK.

There should have been a top sheet explaining how to avoid getting angry over this waste of resources.  That, I could have used.




Wednesday, September 18, 2013

Staff cutbacks? Nursing shortage? Incompetence?


So I came out of my mastectomy with a huge horizontal incision where my right breast once was, and a Jackson-Pratt drain installed. On the left side, I had an infusion port for upcoming chemotherapy.

Although I’d expected to go home after the surgery, I was admitted to spend one night in the hospital because my surgeon expected me to have significant pain.  I even had a morphine pump.

The nursing staff got me all connected and then checked on me every couple of hours for the rest of the afternoon.  They checked my drain and emptied the collection bulb once.  By that time it was clear that I was having NO pain and my biggest problem seemed to be frustration with the lack of anything worth watching on TV.

When anyone looked at the drain again, it was empty. Knowing nothing about what to expect, I assumed that was good  - that no fluid was collecting at the surgery site.  The nurses, in retrospect, should have known better.

What really kept me from a good night’s sleep was not the occasional visit by a nurse, but by the incessant dinging of other patients calling for a nurse.  I have no idea how many RNs and LPNs were on duty, but there were certainly not enough to handle patient demand. 

I don’t know what is an acceptable nurse/patient ratio, but I’m sure it wasn’t the case here.  Why?  Pencil pushers setting standards for care?  Shortage of nurses??? 

If you read the previous post, you know that I was not discharged until mid afternoon on the day after surgery.

I was given oral instructions to empty my drain’s collection bulb twice a day.  

I was given 13 pages of discharge instructions and educational info.  12.75 pages of which were general information and thus utterly useless. 


Someone who might have thought that it was unusual that no fluid was draining out; and who might have at least asked someone more knowledgeable if it should be looked at further.

Any discharge instructions specific to my situation – mastectomy, drain, port implant.   (After my earlier lumpectomy, the outpatient surgery center gave me very clear and specific instructions.)


The surgeon had arranged for Home Health Care so on Sunday a visiting nurse came to see me.  My drain still wasn’t draining and I still had no pain.  I declined to continue with Home Health Care.

Monday morning, my favorite nurse “S” called to ask why I’d declined the nursing service.  After I’d explained, she commented that perhaps the drain was clogged. (That thought should have occurred to me, but it never did.)  She asked if the area around the drain was swollen.  It was. But I still didn’t catch a clue.

As we were getting ready to go out later that morning, I inadvertently pressed on the swollen area and released a deluge of fluid – not through the drain tube, but from where the tube was inserted. What a mess!  I called S and she called the nursing service.

Another nurse came to see me and did what should have been done before I left the hospital.

She flushed the drain which freed the clog.  Much draining ensued.

She explained that not only should I empty it twice a day, but I should measure the volume of fluid and keep a log so that the surgeon can have some information about how things are progressing. The hospital gave me a vial for emptying the fluid but said nothing about measuring and logging.


The drain is working.  I know what to do.

It was a very frustrating couple of days.

At first I was upset with the hospital nursing staff because no one thought my lack of draining was unusual.  Then, considering the constant ding of nurse call bells, I came to fault the hospital for inadequate staffing.  Nurses are run ragged with too many patients to look after.  How can there not be lapses in attention and care?  It’s a very unhealthy situation for everyone.

Saturday, September 14, 2013

Final surgery is done

Friday’s surgery went well but I didn’t get to go home immediately after.  There were two procedures: simple mastectomy on the right side and had an infusion port (for chemo) implanted on the left side.
My surgeon had me stay at the hospital overnight because he was expecting that I’d be in significant pain.  So they hauled me upstairs and set me up with a morphine pump through my IV.

I never used it.  The area involved in the surgery was completely numb.  In fact as I write this more than 24hours after the surgery, it is still numb so I’m still having no pain.  Be nice if it would stay that way for a few days.

So this morning I waited eagerly for the Doc to do his rounds and officially discharge me.  I waited and I waited.  My nurse said that sometimes he comes late on Saturdays.  By 2:30 this afternoon, Neal called the Doc to see what was up.  Turns out he’d had an emergency this morning that tied him up for a few hours.  So he finally gave the go-ahead for my discharge. 

Hanging around a hospital room when you don’t need to be there is not fun.

It sure is nice to be home.

Wednesday, September 11, 2013

A beautiful heart


I have a beautiful heart! So said the ultrasound technician who did my echocardiogram today.  It’s nice to hear good news from a medical person. He said I must take good care of myself. No.  But apparently my heart is in excellent condition anyway.

This test was necessary because some chemotherapy drugs can have negative effects on the heart so it is important to know the heart’s condition going into chemo.

It was fascinating to be able to see and hear my own heart at work – the steady beat, and the whoosh of blood flow.  Very nifty.

And one more thing crossed off the to-do list.

Monday, September 9, 2013

Radiation Oncologist on Board


Had a consultation this morning with my Radiation Oncologist(RO).  I like her! She seems to be really on top of things and she gave me very clear descriptions and explanations of everything. 

She uses Tomotherapy which is relatively new.  Wikipedia has a good section on it here: which includes a photo of the equipment.  Radiation won’t begin until after chemotherapy is complete.

I’m a happy camper today because I feel that I have a very good team of Oncologists to get me through this process.

And the RO’s office was able to light a fire under my surgeon’s RN to get the next surgery scheduled.  This RN who I’ll just call “S” has an attitude problem – she is imperious: seems to feel that she’s the boss in that office and that includes being boss of his patients. When I spoke to S on Friday afternoon and said that I figured that the mastectomy and the port installation could be done at the same time, she told me that “we don’t do that”.  For one thing, the mastectomy will be on my right side and the port will be put on my left side.  I mentioned that my whole body will be available during the surgery.  She then told me that it would be at least Wednesday (day after tomorrow) before she could even talk to the doctor to discuss scheduling the surgery.

When I told the RO that the surgery was not yet scheduled, she got her staff deal with it. 

Surgery will be on Friday (the 13th) and will include both procedures.

In S’s defense, however, the RO did tell me that many times insurance companies will not pay for both when two procedures are done at once. That floored me!  What kind of lame bureaucrat thinks that it is better to incur cost on two separate occasions when one could be eliminated by performing multiple procedures!!  If there’s any logic there, it escapes me.

Anyway, that’s one more item checked off the to-do list.






Friday, September 6, 2013

Let's get this show on the road!

Nothing has changed, but I definitely feel better today after meeting with my Medical Oncologist.   She’s very focused and seems to be very knowledgeable.  Everything I’ve learned about her has been positive.

First comes the surgery. I’ll have a mastectomy – but can’t even do the scheduling for that until next week.

Then comes the chemotherapy.  Preparation for that begins next week with an Echocardiogram.  The following week I have a PET scan to see if there’s been any detectable spread of the cancer.  The week after that I meet with the Medical Oncologist (MO) again to plan the chemo. Because my cancer is triple-negative, she needs to do some work to decide which drugs will work best.  I expect (hope) that I’ll have had the surgery before my next appointment with the MO.

I’ll also have a consultation visit with a Radiation Oncologist next week even though that therapy won’t begin until I’m done with chemo.

I’ll also be meeting with a genetic counselor because of the extensive history of cancer in my family.  At my age, I don’t expect to get any personal benefit from this counseling, but I do expect to acquire information that will be valuable to my kids.

Just getting the process started has a positive effect on my frame of mind.  I may have mentioned before that I’m not good at waiting.  In my ideal world, I’d have the surgery tomorrow and then get started on the chemo after a few days of healing.

I’m not looking forward to chemo. I expect it to be quite difficult.  But I’ve always said that I can put up with anything as long as I know it is temporary.  This will be my opportunity to see if I can really pull that off.

In the meantime, I have a schedule of appointments which means that the wheels are finally turning.  Forward progress!!!






Thursday, September 5, 2013

More surgery is needed.

Had my post op visit with the surgeon – the news is not good.  The tumor was much larger than he expected it to be, and the margins were positive for cancer. Additionally, the surgery pathology report states that there is lymphovascular invasion.  I’d never heard that term so I did some research and found a clear explanation on Dr. Susan Love’s Research Foundation site:

The surgeon was upset that the pre-op imaging indicated a much smaller tumor – just over 1 cm; but what he found was more than 5 cm.  He doesn’t like that kind of surprise any more than his patients do.  If he’d known its true size, he’d have sent me for chemotherapy before surgery to try to shrink it.

When they do a lumpectomy, they remove the tumor and a certain amount of the tissue that surrounds it – called the margins.  This margin tissue is analyzed for traces of cancer. In my case the margins contained tumor cells.

So there’s more surgery to be scheduled.  I have two options. 

  • He can go in and remove more tissue hoping that he gets it all. The down side is that if the margins are still not clear, a mastectomy will be the next step, for a total of 3 surgeries altogether.
  • I can have a mastectomy and simply have all of the breast tissue removed.
Seems like a no-brainer.  Just do the mastectomy. I can handle that.

But what has me concerned today is what I read about lymphovascular invasion (LVI). This can be present even when the lymph nodes are free of cancer (as in my case).  But the implication is that the disease has begun to spread. The further implication is that the cancer has mutated in such a way that it can create its own blood vessels and thus spread itself. Not a happy thought.

So today I’m a little bummed.

Tomorrow morning I meet with a Medical Oncologist.  Originally this visit was to discuss post-op chemo and begin setting that in motion, if necessary.  Now that meeting takes on a much different aspect.  With any luck I’ll have more and better information by this time tomorrow.

I’ll post again then.