Help!! Decision to make by Tuesday

SallyAnneS · August 2016

In March I found out I was BRCA1 and in May they discovered a DCIS (intermediate to high grade and about 3 cm) using MRI. Because I have a better support system on the east coast (I live part-time on the west where I am now and where these tests were done) I contacted a surgeon there at a major cancer center for treatment.

Here on the west coast, the cancer team recommended a BMX and rrSO (which I had 3 weeks ago -- all normal :-). On the east coast, a lumpectomy with rad is considered an ok option. Because of various miscommunications between me and the folks on the east coast, my surgery was scheduled for September. That's 4 months after my diagnosis and, at the time, there was some concern that the size of the tumor indicated some invasive elements.

Long story shorter: The east coast surgeon suddenly wants me to have a lumpectomy with SN biopsy this Tuesday here on the west coast. And then have my mastectomy (I've decided on only one in spite of my BRCA status because of sensitivity retention and my age: 62) a month later there on the east coast. The west coast surgeon thinks that I should skip the lumpectomy here on Tuesday and just have the mastectomy in September. She feels this is unnecessary given only 4 more weeks --- if changes have occurred, 4 weeks won't make any difference! I trust both surgeons. Both are at major cancer centers. Having a a mastectomy here on Tuesday is not an option because I don't have anyone to care for me here. The west coast surgeon and I feel the recommendation for lumpectomy here before the mastectomy in September is probably just a face-saving strategy because I should have had this surgery already and no one scheduled that for me on the east coast!! But she's willing to do it.

I can't make up my mind. I'm still recovering for the rrSO surgery and would prefer not to leap on the operating table so soon. But the worry I have that this needs to come out now makes me think I should have the lumpectomy on Tuesday. That worry is not supported by the west coast folks, but is by the east coast. I am pretty pissed off at the east coast surgeon for placing this in my hands and not reassuring me the way they have here on the west coast.

Help!! Do I get the lumpectomy Tuesday or wait and just have the Mastectomy in September???? I know you all can't give me medical advice, but you've been through it. You know how I'm feeling. And maybe you've had similar choices to make.

Peggily · August 2016

I personally wouldn't do a lumpectomy now since you'll be having a mastectomy in Sept. I had a lumpectomy in June and it took a good 4 weeks to feel back to normal. Had pain in my nipple when I got chilled, like a nerve was sewn in my internal stitches or something and discomfort when running or on riding mower, etc. Not debilitating, just uncomfortable and annoying.

It's possible with the lumpectomy they might not obtain clear margins and there would still be dcis cells in the breast anyway, so I don't see lumpectomy now making a big difference. Just my humble opinion. Best of luck making your choice!!

glennie19 · August 2016

I can understand the need to get it out NOW, but it seems strange to have a lumpectomy, and then have a mastectomy 4 weeks later. It would be one thing if the lumpectomy didn't get clean margins, so you decide to proceed with a mastectomy,,, but to schedule it that way, seems strange to me. Most surgeons try to minimize the number of times you go under the knife due to the risks with anesthesia. And there is no way that the east coast can schedule it sooner? Also: have you consulted a medical oncologist about waiting the extra 4 weeks?

If you proceed with the lumpectomy, do you have someone to care for you after it? You won't be able to drive yourself home. You may need help with showering, etc. I had a mastectomy, so not sure how much you can do after a lumpectomy. Hoping others will chime in here.

labelle · August 2016

After my lumpectomy, I did need someone to drive me home, my BS wanted me to have someone with me constantly for the first 24 hours post surgery. I couldn't drive for a couple of days (or longer if I had still been on pain meds). I did not need help showering, but I definitely didn't feel like cooking/cleaning/doing laundry for several days and even a week out I would not have wanted to drive more than a few miles.

If you are going to have a mastectomy anyway, I see no point in the lumpectomy. Two surgeries (with all the risks inherent with any surgical procedure-bad reaction to anesthesia, infection, etc.) are not better than one IMO.

mustlovepoodles · August 2016

I agree with the above. It's already mid-August. To me, it makes better sense to wait it out and have the MX only, especially since you are still recovering from another major surgery. You have a very early stage, non-invasive cancer. I just don't see the rush to lumpectomy --your cancer is unlikely to grow much between now and Sept.

SallyAnneS · August 2016

Thank you all for your responses! You have pretty much verified for me the most rational decision here. But, of course, there still is the "worry factor." On the other hand, I could replace that cancer worry with worry over two surgeries instead of just the one -- LOL.

The waiting worry comes in because my diagnosis was in mid-May and this probably should have been taken care of in June or July. But it wasn't. So now it's August and in just another month I have the big surgery. One breast nurse I saw here and asked about this said: "Normally you wouldn't have even had the MRI until 6 months after the mammogram (I had insisted on it!) so you wouldn't even know it was there for 3 more months. You've probably had it for years." And my breast surgeon here said "One of our researchers studies the growth of DCIS of all grades and it is very, very slow -- another month won't change the outcome at this point."

Still, my mother died of BC at 69, diagnosed and already metastasized at 66. It was also ER+ So I believe my "brand " of BRCA1 runs this course -- ER+ and late in life. I, in all likelihood, have caught it in time. She didn't. It was the mid-80s and MRIs weren't done nor was her BRCA status known. In any case, I have that deep inner fear --- having watched her go :-(

SallyAnneS · August 2016

It's midnight and I'm having a total panic attack over this decision. I know I want the MX in September. I know, most likely, nothing will change between now and then.

But I am fixated on the east coast surgeon who wanted me not to wait and to have the lumpectomy now with a SNB. I wish I could ask her WHY. Her answer at the time was: I don't want you to postpone this surgery because of my schedule. She did not say "I am concerned....." My west coast Dr says nothing will change in a month.

But I was diagnosed 3 months ago!

Sorry about the panic, but I keep thinking "what if there are invasive aspects and they are spreading while I wait?"

Meow13 · August 2016

If it were me I would have 1 surgery the mx next month. Do you feel like you want the lumpectomy and snb Tuesday? You would get more information and maybe put your mind of ease that the cancer was out.

ChiSandy · August 2016

Ask your MO, but if it were me I’d wait till Sept. and do the MX. It’s still only 4 mos. and it’s DCIS. My friend was originally dx’ed via core needle biopsy in late Dec. Due to handoffs and disagreements between hospitals over imaging, she finally had the BMX in late April. They still got it all--pure DCIS.

SallyAnneS · August 2016

I made up my mind: NO lumpectomy. I saw the nurse this morning and she reiterated that the Dr here felt there was no medical necessity to have this now and and the MX only a month later. The only thing this surgery would do is decrease my anxiety. That's not a minor issue. But it's not worth surgery and "recovery" which would be still on-going when I went in for the MX in September.

Feeling much better :-) Thank you all for your support!

anotherNYCGirl · August 2016

Sally, I agree with your decision. You will be fine!

Hugs from NY

Meow13 · August 2016

Sally, best wishes to you. You will be just fine waiting till September.

Janetanned · August 2016

Sally - Maybe the East Coast surgeon usually does the SNB as a separate procedure and that is why she suggested the earlier surgery date in addition to the Sept date. I'm on the East Coast and my surgeon did the SNB separately, a few weeks before my BMX. He wanted to know how extensive the cancer was and to have a surgical plan all set on the day of surgery.

TrmTab · August 2016

agree with all that has been said...I do know that I was grateful to not have the SNB given I had the lumpectomy (2 times) with out any invasive pathology and thus at MX did not have nodes taken. However it seems like your SNB is a given...

cive · August 2016

You might ask them to put you on a aromatase inhibitor meanwhile which with er+ slows things down (your starving the poor little buggers). They usually take a month or so to really start to work, but shouldn't really be a problem with your surgery.

angiem7571 · August 2016

I had a breast reduction in May. My pathology came back DCIS in the right and in the left cells that were to become DCIS. Because I worked in a cancer clinic for nearly 15 years I said "Take them off" immediately.

I had a double mastectomy in July. Though this was the hardest thing I have EVER done, emotionally & physically I'm glad I did, because they sent my entire breast tissue off to pathology which came back worse than the original testing. (original testing said non-invasive, 2nd testing showed invasive cancer cells)

Hope that helped you.

Angie

Meow13 · August 2016

I agree with starting AI drug asap it works pretty well.

creative101 · August 2016

Hi there decision to make by Tuesday. I'm sorry I'm just writing but I just found this site today and saw your post. Just wondering what you decided. I wish I would have seen this sooner. I know no one can make up your mind. Decision making is crazy. I was diagnosed on May 27th. Had a lumpechtomy the end of June (22nd) and still not sure about getting radiation. Please let me know what you decided

SallyAnneS · September 2016

Hi all,

I decided to wait. The breast surgeon in the west was adamant that it was not medically necessary to have a lumpectomy right then and THEN a mastectomy 4 weeks later! Waiting 4 weeks wasn't going to change the outcome. So far, I don't regret the decision. The mastectomy is scheduled for next Thursday. Now my issue is, with BRCA1, do I go for a single or a double?

I am leaning towards a single (even with my BRCA1 status) because of loss of sensitivity which is a big deal to me. If the pathology on the first comes back worse than expected or there are multiple sites, I can have the second one off after I've recovered enough from the first.

At least that's how I feel today!!

Thank you all for your support :-)

Help!! Decision to make by Tuesday

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