29th November 15:15
an eye on my nether regions more closely..Pat frpm Apple Valley, CA>>
The scarey part of al this is that it further reinforces the need for us to
take an advocational role which we shouldn't be fell forced into the necessity
of doing--at least not all the time and for something like cancer. It is
emotionally and mentally exhausting. It resulted in a fear that I if I leg go
and give some of this up it is going to come back to haunt me--and it has.
What I reported was only one small part of all this. It keeps happening almost
every step of the way (and NO I am NOT paranoid). I am amazed that it has
happened again and again--both with the non-profit HMO system and with private
dr.'s as well.
I won't bore you guys with a repeat of all the details but will add one that
comes to mind--and that was the protocol for radiation. Now, again, at time
of my dx, I knew nothing about b.c. or treatment. An acquaintance/friend who
also had b.c. told me I should ask for a boost when having radiation. Now, I
had no idea what radiation involved, let alone what a boost was. However, I
did inquire about the possible need for such.
The radiation oncologist told me that it wasn't needed. He was basing my
treatment on the main tumor I had--a 2.5 cm invasive lobular carcinoma that was
stage II. I asked him if he was sure I didn't need a boost. He said I didn't.
During the course of radiation one is checked by a radiation oncologist
several times--usually by dr's different than the one who was the initial rad.
onc. you met wit I needed it. Hmm, interesting food for thought--got me
thinking--shouldn't I be given a choice? I wasn't. Anyway, after radiation
was completed and before I started Taxol I saw my regular oncologist (in
10/01). I now knew a little more about b.c. than when I did at time I first
saw him in 4/01. I asked him if I did or didn't have inflammatory b.c. I had
read in a standard b.c. text that we checked out from the library that I was in
the gray area for that too. He said he felt that what was going on was IBC
(and according to criteria for IBC it is/was, although a rarer presentation).
I then asked him if I had IBC wasn't the cancer more advanced than stage II?
He said it was and changed my staging on the reports to stage III.
Looking back, however, the radiation oncologist based his treatment protocol on
the fact that the initial tumor was stage II with clean margins. Also, I don't
understand why the radiation oncologist did not take into account that I also
had the IBC (separate tumor in the nipple within dermal lymphatics) as well as
high grade DCIS with comedo necrosis in his decision about treatment protocol.
I have also since learned that the location of my tumor--upper inner
quadrant--made me at higher risk for internal mammary node involvement and risk
of local recurrence. I do not believe that parameter was considered either.
I did have a chance to discuss this at a later time with a different radiation
oncologist who indicated that in my situation he would have given a radiation
boost, based on those parameters.
This whole thing is so mind-boggling, I am not sure which way to go sometimes.
Interestingly, there was a gal online on a different support group who took her
dog to a vet for a problem and wound up getting opinions from 4--each
different. One recommended euthanasia. Another recommended medication, using
steroids. I am not sure which of the others recommended what--but she took the
combined recommendatins of two fo them and gave her dog supplements and
chiropractic adjustments (for neck disc problem). Sje wemt on to say it took
her 6 months of diligent effort but it paid off and the dog was alive and well.
She learned to apply that 'lesson' to herself. Different dr's have different
education and different ways of dealing with the same problem area. There may
also be an art to treatment as well...Just some more food for thought...
1st December 14:38
I was supposedly a IIB quarter size mass with 4 of 19 nodes positive,
Lobular Carcinoma. I was given a boost of 6 or 7 treatments. a total of
36 radiation treatments. I had 4 A/C and 4 taxol's.... My Onc now won't
order the CA27/29 or what ever it is as he says it just makes you
worry...So no tumer markers...Mine were going up, so I guess I just have
to guess. Now every ache I get I wonder...I'm usually not prone to