first oncologist visit

We met today with the oncologist associated with the Arlington Hospital/Virginia Hospital Center. The first thing to report is that she spoke with the pathologist who looked at the lymph node specimen, and the pathologist was firm in her belief that this is not invasive lobular carcinoma, but rather is invasive ductal carcinoma. That seems odd to me, because I though ductal carcinoma presented as discreet lumps almost always detectable by mammogram, whereas lobular carcinoma was the one that usually presented the way Nadine’s did. I’ll have to look into this some more. I suppose there is an outside chance that it is an atypical ductal carcinoma, if there are such things.

That it is ductal carcinoma does have a positive benefit – the likelihood of recurrence in the other breast is apparently much less than with lobular carcinoma, and so the oncologist said she feels there is no need at all for Nadine to have a double mastectomy. She should simply have regular (probably yearly) MRIs.

The pathologist said the cells looked like an “intermediate grade” but did not give it a grade number (the numbers are 1, 2 and 3, with the best prognosis being for grade 1, the worst for grade 3). This was really much more fuzzy, I got the sense that they can’t make a definitive assignment based on the single lymph node biopsy, so they are just saying intermediate – but this is intermediate leaning towards 1 rather than towards 3. The oncologist said this is also good. We need to bring the slides with us when we go to Johns Hopkins, because the second opinion on pathology is also very important – perhaps one of the most important things, since cell grade, morphology, etc. etc. have such a major impact on prognosis and treatment.

Because the tumor is “locally advanced” and has spread to multiple lymph nodes, the oncologist is recommending that Nadine start 4 rounds (2 weeks each) of chemotherapy prior to surgery. This is to do the best we can to make sure the cancer doesn’t spread elsewhere. The surgeon had actually said he thought this might be wise before sending us to the oncologist, and the oncologist said that surgeons usually just like to operate, so if one surgeon already thinks chemo first might be the way to go, it is fairly likely others will as well. This I’m not so sure about – I get the impression that Mayo at least likes to get in there and cut, but this is one of the major questions we need to get a second opinion on – surgery first then chemo, or chemo then surgery.

If we do the chemo first, and stay with the current doctors, the schedule would look approximately like this:

4 x 2 weeks of combination chemotherapy with adriamycin (Doxorubicin Hydrochloride) + cytoxan (cyclophosphamide)

Recovery period (2 – 3 weeks, I think)

Surgery (hopefully by late June, to avoid the new residents)

Recovery period (2 – 3 weeks)

10 weeks of chemotherapy with taxol

Radiation therapy of the chest wall (to kill anything remaining there, because it is so locally advanced that there is concern about invasion of the underlying muscle) plus start tamoxifen

Continue tamoxifen for 5 years (tamoxifen is hormone therapy that basically suppresses estrogen production – estrogen being needed by the cancer cells for their survival and growth – i.e. basically starve anything that is still left. Tamoxifen is sometimes used prophylactically by women at high risk for breast cancer, so it is not too bad of a drug).

This will all undoubtedly be hard, but Nadine will get through it.

The oncologist ordered blood work today – including tests for a number of cancer markers. She also ordered a full body PET scan as well as a MUGA scan which I think looks at cardiac function, because a rare side effect of the adriamycin/ cytoxan therapy is cardiac toxicity. Hopefully we can get these scheduled for tomorrow, so that we will have the results when we go to Hopkins next Monday.

How it started

HEY EVERYONE! This is hard for me but I'm trying to make myself stop answering individual emails..... They have been so wonderful -- really you guys have gotten me through the initial anxiety. I hate to leave so much love unacknowledged -- but I find I am staying up past midnight every night answering them.....

Course I often stayed up past midnight before, but that is going to have to change now -- because I'm going to need my strength. I already eat well and exercise well -- but I suck at getting enough sleep during the week -- and I'm passing that on to my son I'm afraid. I never saw any research claiming that cancer was caused by lack of sleep, but I think rest will help me heal better..... soon as I figure out which path to take.

I need to start treatment in the next two weeks, the surgeon said. I saw the MRI and I agree -- in fact I want that bad boy* off me like YESTERDAY! Which is what made me think of the title for this blog.... :-) (*"that bad boy" = my right breast and some lymph nodes -- this is stage 2 breast cancer -- I hope. They haven't scanned the REST of my body yet.)

Oh you know what I want to share? Haven't you always heard that cancer doesn't hurt? The painful lumps are safe.... right? Well mine hurts. I mean it doens't hurt enough to complain about -- just enough not to worry about it. So I didn't. It's not a distinct tumor, but a messy blob of cancer all mixed in with a fibrocyst -- probably it's the fibrocyst that hurts, though since the MRI I realized that it hurts all the way up into the lymph -- that's not the fibrocyst..... I don't think. I did have a negative mammogram 2 years ago, and again last week -- negative again, the day before I had the abnormal lymph node removed from my armpit. I thought it was just a lymph node turned to stone -- caused by an infection or something.

This is why I was diagnosed at stage 2 -- before it got to the lymph there was nothing to find. It was seen on an MRI but what insurance company is going to pay for an MRI of the breasts of a woman with only negative mammograms, no family history of breast cancer, and who nursed for 8 years? Even after I found the lump and the surgeon suspected breast cancer he said he'd like an MRI but that my insurance company would never pay for it -- so I'd need to have the lump out and then we could have an MRI if it was positive. I knew he suspected breast cancer but i thought he probably just saw so much breast cancer that he saw it in his sleep at night.... and it was not about me. Told people I was having a node turned to stone removed from my armpit....

Anyway -- fast forward a few days.... at THIS point I need to be figuring out:
1) chemo first or mastectomy first? and
2) where?

Have an oncologist appt thursday, local -- and trying to get an appt at Johns Hopkins for Friday-Monday-Tuesday. That will take all day I imagine..... haven't done so much parenting lately..... and have been turning away work. I'm steady on the biking and swimming, though -- I need to keep that up now especially or I won't be able to sleep or think straight to make decisions.

So I'm supposed to figure out where to go and get it all in place to start treatment within a couple of weeks -- keeping in mind that I might should go to fancy faraway hospital because I have an unusual cancer and want to have the best shot I can at getting old enough to try not to die of a heart attack at 77 like my Nana and Papa. Hmmm, maybe it's not just my fault about not getting enough sleep.....