So this morning came the appointment with the oncologist favored by my gynecologist.
You may recall that not one but two docs — my GP and my gynecologist — so worried about my insecurities over the ongoing (painful, disruptive, miserable!!!) treatment of NOT-a-breast-cancer that they felt impelled to refer me to the medical oncologists of their choice.
Young Dr. Kildare’s choice, visited last week, was perhaps not the God’s Greatest Gift to Diseased Womankind.
Today I visited Sainted Gynecologist’s guy, and he proved to be a great deal better.
First, he could figure out the difference between DCIS and invasive cancer. That was a good sign.
Second, this guy was fully, completely, UTTERLY up to date on the current research. Having made myself almost up-to-date on said current research, I was impressed. Oh, no. I was more than impressed. I was delighted and astonished. The man actually knew what he was talking about. A God’s miracle.
Third, despite being a high-powered medical doctor, the guy possessed an underlay of common sense. This is not a man given to flying off the handle in the various hysterical ways that some doctors are wont (I’m sure you know who they are because you have visited some of them).
Fourth: being of an age comparable to mine, he knew my (now retired) internist at the Mayo, he knew the redoubtable Dr. Packaj and was similarly awed and worshipful of her, he knew the venerable gynecologist whose practice Present Gynecologist purchased (the guy was famed as the finest OB-GYN in the city, back the the day, and all the local doctors and — equally significantly — lawyers sent their wives and daughters to him), he knew Present Gynecologist well, and he did not know Young Dr. Kildare (YDK’s defining characteristic being “young,” after all) but nevertheless did not even flinch when I expressed a certain distrust of John C. Lincoln with the words “this is Arizona, after all.” All of these are signs of a medical doctor with a brain who is savvy in the ways of a large small town that has been fed too much Monsanto-style fertilizer.
(It’s another story…ask me some day and I will tell you, my children.)
Fifth, he did not treat me like a nine-year-old.
Sixth, he answered all my questions in ways that made sense. To do so, he spent well over 70 minutes with me.
Medicare may not pay for this antic, but if I have to pay for it out of pocket, I will do so cheerfully. The guy was ever so much worth it.
To make a long story short, this is what I now think:
On the repeated excision attempts vs. the proposal to cut to the chase and just get the damn mastectomy over with:
It’s worth letting Dr. P take another shot at getting the abnormal cells out of there. Although her chances aren’t good, they’re not hopeless, either. If she succeeds, bully for her — she’ll be proven right. And bully for me — I’ll still have part of a boob left. If she fails, the world will not end: a mastectomy will guarantee no return of the Evil Entity and will mean I won’t have to have radiation therapy.
On the side effects of radiation therapy:
Knock off worrying about that. It’s not great, but it’s not especially horrible either.
On tamoxifen:
Nix. Don’t take that.
On reconstruction:
Stand in front of the mirror and practice repeating this: NNNNN OOOOOO, NNNNN OOOOOO, NNNNN OOOOOO, NNNNN OOOOOO, NNNNN OOOOOO, NNNNN OOOOOO…..
Put the two sounds together and practice that a few times: NO…NO…NO…NO…
Utter this sound to Dr. P.
Refuse to sign any papers permitting anyone to do any reconstructive surgery.
Voilà. Problem solved.
On the advisability of declining reconstructive surgery:
His patients who have had implants removed or who have refused reconstruction report that they’re happy with their decision. But if I feel I am not a complete human being without a blob of flesh or fake flesh hanging from my chest, one can have this procedure done at any time in the future.
On recovery time from simple mastectomy:
Probably three or four weeks. Maybe a little longer to get over the fatigue. No point in working yourself into a state of hysteria over that.
On finding someone in town who makes custom prostheses:
Doesn’t know of anyone and believes no such company exists in Phoenix. Find a maker in some place where you’d like to take a medical vacation.
Okay, okay, he didn’t say that last thing. But that was the implication. No one in Arizona that we know of is making light-weight, comfortable custom prostheses. To get measured for one, patients have to travel to other states.
So it goes…
Welladay, is that … is that common sense emanating from a doctor you’ve spent time with? Because that certainly seems unexpected. But GOOD. I’m so glad he’s backing you up on the reconstruction (NO) thing – you don’t want it and they shouldn’t be forcing or trying to force you into doing it.
Yah. Whereas YDK has common sense but limited experience, this guy combined commons sense without about 40 years of experience. It was an amazing encounter!!
As for reconstruction, his advice was (to paraphrase) “just say no.”
Can’t believe a city the size of Phoenix cannot supply a wearable fake boob! Maybe Las Vegas or LA? So a possible 2 more surgeries? YUK! Is the only way to avoid that to have a mastectomy? How attached are you to a part boob?
Phoenix has yet to convince itself that it’s really a city.
How attached? Not very. But I dread having DRAINS stuck in my chest for several days or a week following the amputation. Ugh!
Hooray! Glad you found a doc that is speaking sense (finally)!
As for a prosthesis, this seems to be an interesting (and free or low cost) option if you know a knitter http://www.ravelry.com/patterns/library/tit-bits. Oh, and did I mention that I am a pretty avid knitter and would be more than happy to make one for you as a gift? 😉
Great! I’ll remember that.
There’s a cancer center way, way on the east side, halfway to Tucson, that dispenses these for free. They call them “knitted knockers.” LOL!
Your pattern looks much better than theirs, which look a lot like the toe of a knitted sock.
They’re said to be much more comfortable than the off-the-shelf prostheses, which supposedly are heavy and uncomfortable in the heat.
The only thing I’m confused about is what happened to the option of “watch and wait”? I thought all agreed that DCIS, and yours in particular, did not have a likelihood of turning to cancer???
Can’t you just stop the surgeries?
If what remains is just left in there, the likelihood of its turning to invasive cancer is actually pretty high. In the first place, it turns out to be at least five times larger than originally thought; the larger a DCIS, the higher the chance it will evolve into malignancy. In the second place, it’s been cut into; some evidence suggests that cutting into some kinds of DCIS can accelerate progress toward cancer.
Watch and wait might have been viable at the outset, before all this began. But just now we seem to be well past of the point of no return.
Funny, It appears finally someone has taken the time to sit down with you and explain to you in terms you can understand your cancer and what needs to be done to set you right. There appaears to be hope for the medical profession after all. . . .LOL. But this is great news. As for the Tamoxifen, it appears folks are all over the place about this drug. A DF of my wife opted to take the drug for 10 years with all of it’s side affects. But she just wanted to make sure the cancer was gone. Another friend had her procedure, then reconstructive surgery, did her research and decided against the drug. Both gals seem to be doing well, but time will tell. What I like about your blog is you seem a bit more composed and confident in the course of action to be taken. In other words…”you have a plan”….which can make all the difference…Best Wishes…
Well, there’s always been a plan. It’s just that I haven’t bought into it, because I believe this is a case of overtreatment. Nor do I appreciate the endless series of surgeries.
Remember, I was told this would be a twenty-minute procedure and then we would be done.
Instead, by the time this is over, I will have had at least four surgeries and probably five, I will be subjected to toxic levels of radiation (and don’t kid yourself: it is toxic, with side effects that can surface years in the future), I will be mutilated in the best outcome and without a breast in the worst, and one doctor wants me to take a drug that can have fatal side effects. All for a lesion that is NOT cancer, may never have become cancer, and quite possibly could have been left alone.
Additionally, I have been actively pressured to subject myself to reconstructive surgery that I do not want and that has a high rate of unacceptable results and of future complications and surgeries.
IMHO there’s plenty of room for doubt there.
Tamoxifen would make sense if your wife’s friend had invasive cancer. It doesn’t make sense for a DCIS known to be indolent. In the case of DCIS, survival rates are identical, whether you have radiation alone or whether you add tamoxifen. You may have a recurrence of the DCIS or you may have an occurrence of invasive cancer even if you are taking tamoxifen. Whether you’re on the drug or not, the result will be the same: you will have a mastectomy. In groups of women who do and who do not take tamoxifen, the long-term survival rate is consistently the same.
I have been through this twice with my mother. Lumpectomies followed by radiation. The first time was the worst as we didn’t know what to expect. I have recently been reading of a new procedure where they do a one time radiation treatment instead of the repeated appointment schedule. I think that may be worth inquiring about.
Yeah, that’s one of several new options. The Mayo doc is hot to do the three- to four-week course, a HUGE improvement on five to seven weeks! I’ll ask them about the one-time thing…maybe i can get out of having to kill half a day every day for a month…
How did it go with her? Did she experience any side effects?
Good to know you found a doctor who was willing and able to take time for you and that you have confidence in. Scary that you have had such a long journey to find one!
Sending you more best wishes for the best outcome for you.