Diagnosed w/ Breast cancer - what do I do now?

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I'm one of those people who basically ignores their body until things start to go wrong. This is mainly due to the fact that I have a low tolerance for pain and dislike needles and other things they torture you with at the doctor's office. However, in the last year or so, I'd been having mild pain in my right beast. My first few trips to the doctor were in vain. They told me that "as women age, they have calcification in milk glands..." etc., and I was basically told that it was nothing to worry about. So, I let it go.

A few months ago, the pain flared up again and this time it intensified to the point where I'd be standing in the shower and just the water running over my chest would hurt it. That's when I faced the fact that something was indeed wrong and I needed to have it thoroughly checked out. I'd also been going to the doctor for bleeding problems inside my uterus, and this past Thursday, they removed a golf-ball-size fibroid and another pretty large polyp that they sent off to a lab. I was more concerned about the problems with that than breast cancer. Why? Because breast cancer doesn't run in my family on either side, so I figured I had a very small chance that this would turn out to be a problem. I figured I had some kind of inflammation that could be cleared up with a few antibiotics and what-not.

Wrong.

14 days ago, a mammogram (the first one I've ever had in my life) turned up a small mass in my right breast. The radiologist told me that she didn't like how it looked and wanted a biopsy done. So, 11 days ago, I went under the knife and had the tissue removed and sent off to a lab. The bad news came yesterday afternoon when the surgeon told me that yes, it was cancer. I was so surprised I couldn't speak. My husband, who was sitting next to me, began to cry.

On the bright side, the surgeon said that the mass seemed to be contained in one spot (0.6 cm diameter) and he thought he was able to remove all of it. However, it had been there for many months and he wants now to go ahead and do a mastectomy on my right side. DNA tests are being done as well to check for the BRCA-1 or BRCA-2 gene mutation. If that turns up, I'll probably have to have a double mastectomy to cut down my chances of the cancer coming back. Needless to say, I'm still in a state of shock.

The doctor that diagnosed me is not a breast cancer specialist or even an oncologist. He gave me very little information. It would be helpful to know exactly what kind of breast cancer it is as well as what stage it's in. He didn't have those answers and yet he wants me to go in next week and have this surgery done. I could opt for a lumpectomy, but then I'm looking at 6 doses of radiation and 6 months of chemo.

I went from worrying about whether or not I was going to have to have a hysterectomy to THIS. I don't know how to process this information. Should I ask about reconstructive surgery, or is that just a "vanity" thing for a 42-year-old woman? Do I really need my breasts, especially considering that my "bathingsuit" days are far behind me? At the same time, it would be very weird to wake up and find them simply gone.

Oddly enough, I'm not frightened. I thought I would be, but I'm not. I'm just sort of stunned. I'm wondering, "Why me?" Breast cancer doesn't run in my family, so how did I get this? Then, I'm wondering if I should ignore the surgeon and go find a cancer specialist and see what they think I should do, and that could take a month or two. Can I wait that long? Should I?

At any rate, if anything I've learned from this is to not ignore the body and what it's trying to tell me. I tend to look at my body as a mode of transportation for my brain and little else. If you get a flat tire on your car, your get it replaced. But this isn't exactly the same thing. This is serious. If you feel something is wrong with you, don't ignore it because it may not go away. Pretending it's not there can kill you. Fortunately, the surgeon thinks he caught mine early, but it could very easily have been ignored or missed altogether if I hadn't gone ahead and gotten the mammogram. Sonograms missed the cancerous mass altogether and the only reason the mammogram caught it was not because the mass showed up, but because the radiologist had noticed that tissue in the questionable area had "tethered." Otherwise, the mass was not detectable at all. Had the radiologist not been very good at her job and not paid close attention to these subtle signs, this cancer would have continued to grow and spread. As of right now, I have a good chance of surviving over the next five years. Had I waited, I'd have been in big trouble.

If you're over 35, insist on a mammogram. Don't let them tell you that your breast tissue is too dense. Sonograms can miss small things like a mass the size of a pencil eraser that hadn't quite gathered itself into a tumor yet. That's what happened to me. The earlier you catch these kind of things, the better.

Peace,

E333

Last edited by Element333 on 07 May 2010, 12:10 pm, edited 1 time in total.

You definitely need to get a second opinion from an oncologist before anymore treatment is done, as well as find someone to spend sometime educating you about treatment options and side effects.

Put the brakes on that knife happy uncommunicative doc... that's not what you need. There are some very good support groups out there, and though you're Aspie, you're going to need to talk to others who have gone through this.

You'll probably need to line up some help while you recover... treatment sucks the energy right out of you. Cancer hospice will be able to help with that... and friends. Be clear with them about your need for order and silence, or any other AS symptoms, and [hopefully] they'll take that into consideration when finding folks to help you.

You're in psychological shock right now, that's why you're not feeling much. It'll hit later.

And keep in touch here...

YES!! ! Second opinion for serious health issues is always a good idea. In your case it is a must. See what an oncologist has to say.

Asking a surgeon for their opinion gets you just one kind of advice: surgery.

Like taking a car into a shop where they only replace engines. Guess what? They'll sell you a new engine.

I'm sorry. I hope things work out for you. It sounds like you caught it early. Things will turn out well. You'll see.

Thirded - get a second opinion. Doctors like to sound "absolute" yet often they're full of s**t.

Last edited by monsterland on 05 May 2010, 3:39 pm, edited 1 time in total.

Wow, yeah, a second opinion is definitely needed. My sister had a single mastectomy with her breast cancer, but she was in Stage 4 when they caught it. She survived and is now cancer-free. Go find an actual oncologist who specializes in breast cancer and see what they have to say.

Sounds to me like he gives a s**t, and he went to the appt., so I think he'll pull it together and be helpful. What a thoughtless thing to say... Like crying when someone you love gets a serious medical diagnosis is a sign of incompetence...

So many men wouldn't have even gone, and continued to be emotionally checked out and distant--hey it's your problem, I've got to go to work-- or more concerned that the breast was being removed than that the woman he loved was being threatened with death by cancer.

All right, I can see how my attempt to inject a little levity into the situation could be seen as a bit insensitive, so I removed it.

However, I still don't think the crying husband was doing the OP's emotional state any favors, and I do hope this isn't a pattern.

I think his response was within normal parameters, and I agree with the hope he won't make this all about him, but this is neither the time nor the place...

it's why she needs to make connections with a cancer support group.

Sorry to hear about the diagnosis. Definitely seek a second opinion if it will put your mind at rest, just don't leave it too long.

I think DonkeyBuster is right; a cancer support group would be a great help (there are probably online ones too). They'll let you know what your rights are and reassure you that it's not 'vain' to think about reconstructive surgery.

Thanks for your reply, Donkeybuster. I've had to take a few days to wrap my brain around this and I've decided to get the mastectomy but I want it done in such a way that I can get the breast reconstructed. After reading your post, I scheduled an appointment with a G.P. to get a referral to an oncologist, whom I talked to over the phone briefly. She told me that the particular surgeon I have who made the diagnosis leaves here for the summer and doesn't come back until Fall, so he's just trying to squeeze me in before he takes off for the golf course. There are other surgeons who can do the mastectomy, even if I have to drive all the way to the next largest city 200 miles away to have it done. I guess everything is just happening so fast. One minute, I'm worried about a hysterectomy and in the next, I have to lose a breast and get radiation treatments. I guess I just shut down for a few days. Now that I've recovered from all the crying and what-not, I can think more clearly. Thank you and everyone else who has commented for the advice. I will definitely get a 2nd opinion.

Much appreciated & thanks

E333

Exactly. You're right. The surgeon means well, but he's not a woman and not an oncologist. He's looking at the situation pragmatically - I have cancer, it needs to go, cut out. End of story. Well, there's a little more to consider than that.

Thank you for your reply & comments. After my meltdown and subsequent days of reflection, I agree with what you said. It makes sense. 5 or 6 more days can't make it much worse than it already is, lol.

Thanks again

E333

Nothing wrong with a little levity. I've tried to inject a little humor into my situation as well, as a means to emerge out of the shock of it all.

No, my husband is the very last person to cry. That's why his reaction surprised me. I've never seen him react like that. He's a retired Staff Sergeant from the Army who has seen a lot of things in his life. He wiped a few tears from his eyes while the surgeon talked because my husband has always been my "protector" (his words) and he realized right then that he couldn't protect me from this. He felt helpless at the time, that's all. He's since rebounded from the shock of this news (as I have, sort of) and is now proactive about getting more information. He'll be there for me. I have no doubt about that.

thanks

E333

Oh for the love of Sam... get you in a panic so he doesn't miss his tee time. I hope he bogies every hole all summer. }=P




Perfectly normal, perfectly reasonable reaction. And you've taken the initiative to slow things down a bit and give yourself time to both gather info and properly assess your options.

I would encourage you to consider talk therapy of some sort... loosing a breast has a huge impact on a woman's self esteem, confidence and body image, even with reconstructive therapy. And however your dear husband responds to the situation, it will have an impact on him as well. Which will have an impact on you and it's just flat nice to have a "supportive stranger" to talk it out with.

Best wishes and keep us updated.

Thanks, Lene. I'm doing so now. I was paranoid about waiting another couple of days while picturing cancer spreading with each passing second, but talking to the oncologist on the phone helped, too. We got more proactive after I emerged from my two-day-long crying extravaganza, and my husband went back to the surgeon's office and got copies of the imagery and pathology report. I definitely want another opinion on this before they start chopping off parts of me.

Oddly enough, the reason I finally settled on the idea of breast reconstruction is not because of looks or anything like that. My husband said if they took both breasts and I didn't have any reconstruction, he wouldn't care as long as I'm still alive to grow old with him. He would love me just the same. The reason I'd like to have the reconstruction came to me when I put my seatbelt on when I was in the car. It occurred to me that without a breast there, seatbelt would keep sliding upward and it would feel like it was constantly choking me, which would drive me nuts. I can't stand things resting against my neck, which is why I don't like turtleneck shirts and scarves. It's dumb, I know, but that's the kind of stuff I considered when making the decision.

thanks for all your support and comments, I feel much better about this now.

E333

I agree & I very much appreciate you taking the time to reply. We're looking around for a cancer support group in the area. We're in a relatively small, isolated town, but there has to be one somewhere. It would be nice to ask questions of someone who's already gone through something like this.

Thanks again for your help,

E333

That's it... we need to clone this guy. I'm a lesbian and I love him already!