Just dx'ed last night; saw PCP this morning

nightcrawler · June 2017

I was just dx'ed last night with IDC/DCIS. My husband and I went to see my PCP this morning, right before going to the gym (it was my idea to go from the doctor's office straight to the gym). He went over my path report with me, line by line, and gave me a hopeful outlook:

* The tumor grade is 1. It has not yet been staged.
* Hormone receptor tests are pending.
* It is tiny, ~0.7 cm.

AT THIS TIME, there is no evidence the cancer has moved outside the breast. He is referring me to a breast surgeon.

He tried reassuring me, but it's still cancer, plus, I'm worried about completing treatment before the end of the year, prior to losing my health insurance (I'm self-employed and stuck buying on the marketplace). I'm also worried about keeping my micro-business running; I work from home, as a marketing consultant, primarily to cyber security companies. In addition to not getting health insurance through an employer, I also don't get sick time or anything like that; I either work, or I don't get to eat or live indoors. My husband is also a self-employed marketing consultant; we only recently merged our efforts into one business. However, he can't handle the cyber security clients; he doesn't know a thing about IT or infosec.

Needless to say, I keep going up and down.

MTwoman · June 2017

okay, nightcrawler, one step at a time. So far, the grade is good news. Once you start assembling your team and get the rest of the particulars (er/pr/her2 etc) you'll create a treatment plan and have a much better understanding of what your year will look like. You'll want a BS, (perhaps ps, depending on your choice lx vs mx) an MO and most likely an RO. You can go ahead and schedule appointments for consultations if that helps you be pro-active. I do know it can be overwhelming at the beginning, when there is as much you don't know as what you do. But you can get through this! It is the very worst stage. As you begin to get a handle on what happens and when, you'll be able to get back to planning and knowing when you'll need a few days off, and when you'll be ready to be back at work. I used work as a welcome distraction. I could take my mind off my medical treatment and focus exclusively on something else for periods of time. I was on call within 48 hours of my last surgery. And while I don't recommend that, don't assume that you won't be able to work enough to keep your business running. Keep going to the gym, or whatever else works for you when you're anxious. I actually have a thread that deals with anxiety - which is typically higher while folks wait for testing or very early in their diagnosis. If you're interested you can find it here:

https://community.breastcancer.org/forum/83/topics/855477?page=1#idx_14

Sending you ((hugs))

ICanDoThis · June 2017

With Grade 1, you are likely ER/PR+, and the cancer is very unlikely to have spread.

I was also Grade 1, Stage 1 (but my tumor was larger than yours), and I was kind of surprised to realize how little the amount of treatment we need -- I was comparing myself to people with bigger, more aggressive tumors, and didn't realize how much variation there is in BC treatment.

I had a lumpectomy, with sentinel node biopsy. My surgeon got excellent margins (the area around the tumor that is removed to make sure that they got all the cancer), and radiation. You may be able to get radiation while you are asleep in surgery, or you may be eligible for 1-3 weeks of radiation, rather than the 6-8 that women with more advanced cancer get.

After that, it was a prescription for tamoxifen, and bob's your uncle, I was done, and felt a little dumped by the roadside. But I am now 9.5 yrs out, and doing just fine.

You will likely do just fine too

ElaineTherese · June 2017

nightcrawler,

MTwoman is right that you shouldn't look too far ahead. So far, it sounds like you've had very good news -- a small tumor that is growing slowly. That means that you are unlikely to have cancer which is HER2+, which is typically Grade 2 or Grade 3 and usually results in chemo. Indeed, chances are that you probably have the most common form of breast cancer, ER+/PR+/HER2-. If so, your path forward is fairly straightforward -- surgery (possible reconstruction, if you choose a mastectomy though some women choose to go flat); Oncotype test to determine whether the risks of chemo outweigh the benefits; radiation (if you choose a lumpectomy); and hormonal therapy (daily pill). MTwoman is also right that you shouldn't assume that you can't work through treatment. I worked through chemo and radiation, and was back at work (for a half day) after my lumpectomy. ((Hugs)) It gets better.

Anonymous · June 2017

Just dropping in to say that your PCP sounds AMAZING. I was diagnosed by breast specialist over the phone and unfortunately my PCP was out of town.. had to wait a week for MRI and next meeting with the breast specialist. That was probably the MOST stressful week. Being able to be seen by PCP the next day and walk through your info with you like that.. all I can say is keep that person on your team forever

And editing to add to the others - if your cancer is the most common and therefore like mine (see my diagnosis below) I've been talking to a lot of women who have been through this and it echoes what those above have said. I had lumpectomy on May 25 and took one week off, back to work with no problems this week. I've been talking with women who have been through radiation and most only needed a couple weeks off, near the end of treatment or just following treatment, because the fatigue and side effects cumulate.

Note: If you are over 50 years old and post menopausal, and your cancer does turn out to be er+/HER2- stage 1 and the surgeon gets good margins from lumpectomy, and if you are going to take endocrine therapy, you will likely be eligible for a clinical trial to choose NOT to do radiation. There are at least two major trials recruiting participants for this right now. I REALLY wanted in but I am 49 and perimenopausal so I just missed the criteria. My RO said that if I were a little older she would absolutely be recruiting me for it. So if you fit the criteria (which you won't know until after the testing of your cancer cells post surgery) and if you are worried about the effects of radiation therapy on your life/work/finances, this might be worth finding out more about. One is called the IDEA trial: https://clinicaltrials.gov/ct2/show/NCT02400190

And the other similar one you can find on the Memorial Sloan Kettering website.

Jenmia2002 · June 2017

I too had a Grade 1 tumor that I found in March. It was PR/ER+, HER2 NEG. I had my Lumpectomy in April. The tumor measured 0.9mm. I had 3 lymph nodes removed and they were all negative.

I just did my 7th treatment of radiation out of 33 and will start Tamoxifen after I complete my radiation. I had all the other tests done BRACA Negative, MammaPrint Low, MRI only showed the one tumor in my right breast.

I've been working the entire time except for the time I took off after my Lumpectomy. I took a full week and then worked half days the second week. I haven't been too tired and have continued to work out. Of course after surgery I couldn't for a few weeks but I'm back at it now.

The beginning of my diagnosis was the hardest. The women on here are great and I spent many hours reading these boards.

nightcrawler · June 2017

I am very fortunate; the breast surgeon just called me, and they have an appointment tomorrow morning! Because I work for myself, I was able to just take it without worrying about a boss complaining about it.

Tappermom383 · June 2017

Like you, nightcrawler, I work from home - that's a real blessing after our surgeries. My surgery was on a Friday - I took the weekend off and started getting some work done the next Monday. Paced myself really well, only doing a little bit each day.

Good new about getting the appointment with the breast surgeon tomorrow. Once you have a plan in place, things will start to make more sense.

Best of luck to you.

MJ

nightcrawler · June 2017

I saw the breast surgeon today. I like this guy a lot.

I told him that because my cancer is very small and slow-moving, my risk appetite is large, and I want to be as conservative as possible with treatment. He agreed with me! He wants to do a lumpectomy and sentinel lymph node biopsy, the latter being done just in case. It is a day surgery (I was so happy to hear that), and they can do it on June 26. He could have done it sooner, but he wants to wait for the hematoma I got during the breast biopsy to go down.

I feel better now than I have since all of this BS began.

MTwoman · June 2017

Oh that's good news nightcrawler! Putting together a team that you work well with is a really good step and I am glad to hear that you are feeling better!

I got a hematoma with my lx and it did affect my subsequent surgery - they did my mx in one surgery, the TE placement in another, the exchange surgery in another and the final plastics in yet another - all to avoid more hematomas.

Good luck!!

ohioproud · June 2017

Nightcrawler, it sounds as if things are moving right along and in a good direction. I am just behind you (diagnosed this week with clinical stage 1/grade 2 IDCT). Meeting with surgeon June 19 to understand the rest of the path report and decide on a plan of action. I guess they don't officially stage and grade until after they remove the tumor itself). I am a runner too, but I need knee surgery (happening June 13). I know I'll need to be running to deal with the stress I am already feeling. Wishing you all the best.

ready2bedone · June 2017

Nightcrawler - I also worked from home (just retired 2 months ago) and was self-employed for 20 years so I understand your concerns! I had many various surgeries over that time and none of them interfered much with my work. I had a double mastectomy 2 weeks ago and easily could have been working here at home 3-4 days later. You don't need much arm range of motion to type on a computer. :-) I also got lucky and will only need hormone therapy - no chemo or radiation - so that means that as far as anything physical that could have prevented me from being able to do my work at home, there won't be anything else. Emotionally though, I was grateful that I had retired because waiting on all the different test results was brutal!

nightcrawler · June 2017

I know that what I need to hope for is no lymph node involvement, which will mean a much shorter and less taxing course of treatment. The surgeon is very optimistic that the cancer has not spread, but he has to do the lymph node biopsy to make sure.

One thing that might complicate my treatment course is that I have severe endometriosis. I was taking continuous bcp's to control it; I had to be taken off the regular pill and put on the mini pill last fall because of high blood pressure. I'll probably have to be taken off the mini pill once the hormone receptor tests come back, as, with a grade I tumor, it is highly unlikely I'm triple-negative. I'll have to see what happens.

If they decide to give me a hysterectomy, I'll be thrilled. I've wanted once since I first became sick, when I was a child. I have very, very aggressive stage IV endometriosis. Each period was more violent than the one preceding it, and I was crippled at the time I was put on the continuous bcp's. A hyst, to me, would be a benefit to having cancer; finally, I'd be rid of the [expletive] organs that made me so sick, the course of my life was completely altered.

MTwoman · June 2017

nightcrawler, I was triple negative dcis. They took me off birth control (I was 38) prior to my lx and didn't not want me to restart once my histopathology came in. sorry

MinusTwo · June 2017

nightcrawler - the very best thing that ever happened to me was a hysterectomy for endometriosis. I had that surgery in my late 30s, long before the breast cancer came up. I'm surprised your docs didn't address that earlier. It was so wonderful being rid of the painful menses & assorted issues that I kicked myself for putting it off so long.

Let us know when you get more results.

nightcrawler · June 2017

The surgeon knows I have the endometriosis and am taking Errin. He said that I probably will have to stop taking it, but not right now, as we don't even have the hormone receptor tests back yet. I see him again on 6/22, four days before the surgery. I'll see what he says at that juncture.

ChiSandy · June 2017

You ladies who said that your tumors were, respectively, “0.7mm” and “0.9mm,” know that’s smaller than a comma or apostrophe in this website’s font. Surely you meant to say “0.7cm” (which is 7mm) and “0.9 cm” (which is 9 mm). Otherwise, a fraction of a mm wouldn’t have shown up on even the most precise mammogram except as a microcalcification (and probably not even then) and certainly wouldn’t have been a palpable lump (it would have been smaller than a blackhead). Please clarify.

nightcrawler · June 2017

You're right; that was a typo. It's cm, not mm

Just dx'ed last night; saw PCP this morning

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