What NExt?

By peaches Saturday, December 29, 2007

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I was diagnosed in October. Node Positive. Due to many problems, i will not start my Chemo until Jan. 9th.

My Doctor first did a Lumpectomy. A week later, she performed a modified radical mastectomy. To begin with, the surgical scar is absolutely awful! She told me it would be because she needed to leave enough skin for reconstruction. My Oncologist said he had never seen such a nasty scar.

I developed an intestinal infection due to the antibiotics and Chemo has been delayed for 3 weeks until that problem has been cleared up. When i went back to the surgeon the last time for a check-up of the incision and the intestional infection, she looked at the scar and said, "You know, i can get rid of that excess skin right here in my office if you would like?" I thought the idea was to leave tissue for reconstruction!!!

Is this the norm or have i just found a very incompetent surgeon?? This has all been very disheartening and i'm about to give up on this whole thing. If i'm going to die anyway, i would just as soon get it overwith faster and not have to put up with the pain or have my family deal with the expense. No insurance.

Thank You All.

Comments (5) | Add comment

Maria Gifford, Editor

12/30/07 6:52pm

Hello, Peaches. Welcome to our community. I'm glad you found us - we're here to help. There are many women on this site that have TONS of incredible advice and support to share with you.

I'm sorry to hear of your surgeon/scar troubles and the delay in chemo due to an infection. I'd say it sounds like you're a hell of a trooper to get through all you have so far - GOOD FOR YOU! Hang in there, stay strong.

Here are some great reads from our incredibly prolific patient expert, PJ Hamel, that I thought you'd find helpful:

You're Stronger Than You Think

http://www.healthcentral.com/breast-cancer/c/78/17562/youre-stronger/

Top 10 Reasons to Be Glad You Have Breast Cancer

http://www.healthcentral.com/breast-cancer/c/78/9193/top-10-glad/1/

Ten Reasons Cancer Stinks, and Ten Reasons It Doesn't

http://www.healthcentral.com/breast-cancer/c/78/2120/ten-ten-doesnt/

The 10 Things I Know About Breast Cancer: A Survivor's Advice

http://www.healthcentral.com/breast-cancer/c/78/11598/10-advice/

Soon I'm sure you'll hear firsthand from the many breast cancer fighters/survivors on our site. What they have to offer is priceless.

If I can help you find any specific information, just let me know. I'm glad to help.

Keep us posted on how you're doing. Write again soon.

Best,

Maria

Phyllis Johnson, Health Guide

12/30/07 8:11pm

Dear Peaches,

I'm sorry you're having so much trouble recovering from surgery. No one can tell you over the internet whether your surgeon did a bad job. Infection can occur no matter how good the surgeon is. It's not clear whether your oncologist was talking about the infection or the skill of the surgeon.

What's important now is getting yourself well as quickly as possible so that you can move onto the next stage. I remember how depressed I was after my surgery when the pathology report showed 16 positive lymph nodes and two previously undetected tumors on my chest wall. So I can relate to your sense that it hardly seems worth going through chemo if you can't expect a good outcome.

Once I actually got up the nerve to ask my oncologist whether I could expect any kind of long term survival with such a high lymph node count, I felt better. He assured me that I did have the possibility of long term survival. That was almost ten years ago and I've had no recurrences, so I guess he knew what he was talking about.

Once the surgery scars heal up and you have fought back the intestinal infection, I think you will find the strength to move onto the next step of getting rid of any lingering cancer cells by moving onto chemo.

Your oncologist's office probably has a person in charge of helping people find community resources for financial help and other types of support. Your local Susan B Komen Foundation or American Cancer Society may also be able to put you in touch with local resources.

Let us know how you are doing.

Phyllis

PJ Hamel, Health Guide

12/30/07 9:02pm

Peaches, it sounds like your surgeon wasn't paying attention, if she first said she was leaving skin for reconstruction, then asked you if you wanted her to get rid of it... If I were you, I'd put it to her in a straightforward manner: Why is this scar so awful? And why did you leave skin for a reconstruction, then ask me if I wanted it taken off? WAS this a skin-sparing mastectomy, or not? If this doesn't work, if you don't feel satisfied with her answer, get the hospital's social service team involved. Ask to see a social worker, and press her/him to help you get this straightened out, as you don't feel confident in the hospital's personnel at this point, and would be uncomfortable continuing treatment without some assurance that you'll be given better care than you've received so far.

Bottom line: It's tough, but you have to BE tough, and advocate for yourself. Doctors are human; they make mistakes, and sometimes they just need to own up to them. Or, if it's a misunderstanding, you have to be the one to keep pressing till you're satisfied. You ARE just as strong as you need to be!

As for the money, Phyllis is right. There are community resources. And I know for a fact, at the hospital I go to, they're required to treat patients whether they can pay for it or not. Offer to the financial services folks what you can pay per month, tell them that's what you can afford, and ask them to help you find other resources (Komen, etc.). If they won't - pay what you can pay, and the heck with them. I had my credit ruined by my hospital, but so what - life goes on. And that IS the bottom line: life goes on. NEVER think that it's not worth it. Every new day that dawns is a new chance for happiness, for those simple moments of joy and comfort and satisfaction and love that are always out there, ready to appear at the most unexpected junctures in our lives. Please don't give up; it's so, so much better to go on... you don't know what's down the road. Why not keep putting one foot in front of the other, and see?

I'm sending you my best healing energy, Peaches (I'm a Reiki practitioner- I can do that!) - PJH

Cancer Vixen, Health Guide

12/31/07 12:07am

...and there are a lot of us out there who didn't have insurance when they were diagnosed.

You did the smartest and best thing for yourself. You have and had the courage to ASK QUESTIONS. Peaches, your letter is full of fight.

Maria, Phyllis and PJ gave you great advice.
What I can add here is speak from my no-insurance-at-diagnosis-experience.

What is a concern are the different answers your surgeon gave you. I would definitely call her on that one, and I would have someone in the room, like a relative or friend with me when I did it.

Another thing you might want to do is talk to your oncologist.
He sounds like a straight-shooter. Can you ask his advice? Maybe he can recommend another surgeon? Especially if you feel uncomfortable with her response after you talk to her.

Also, just because you don't have insurance doesn't mean you can't ask another doctor for a second opinion. When I was first diagnosed without insurance, I felt I owed the hospital because they were working with me financially, but I also wanted to make sure I had the best care. I had all those weird-I’m-not-worthy-emotions and felt beholden, but that’s such b.s.!!!

About the healthcare issue, I know that hospitals take Medicaid, and there are social workers and doctors who will help you through the process.

I hope this helps.

Stay in touch,

Marisa

koponen

1/ 4/08 11:42am

Hi Peaches,

It sounds like you're having a pretty rough time...you hang in there and I am so glad you found this site....this is where you can get more help, advice, support, love than you can imagine. You are all ready meeting some of them in Maria, PJ and Laura. I found it incredibly helpful to go back and read older shareposts. I found women that I relate to and can't even tell you how much they have helped me. I'm halfway through now but can totally remember what it was like in the beginning.

It is so hard in the beginning because of the "unknown". Ask questions, get answers, research, get second opinions, change doctors if you're not happy....do what you need to do....

This is the second "big" medical thing for me. Summer of 06 I wound up in emergency surgery with sepsis over a kidney stone....no insurance...still trying to pay for that. Luckily, I have insurance now (paying through the nose for it!). So I really can relate to your problems...

The most important thing I can tell you is - you are not alone and it will get easier!

Take care,

Koponen

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