Chemo both before AND after surgery?

kimmie39

Hi all, I need some help. I have recently been diagnosed with IBC. I am 39 and this is the second round of breast cancer for me. At 27 I had IDC and had chemo lumpectomy and radiation.  Now 11 yrs later I have triple negative, Inflammatory breast cancer in my Rt breast (which is the same breast as last time) and three tumers in my left breast and at least one possitive node.

I'm in chemo now and have 2 more cycles to go , then the plan is a double mastectomy and node removal on the left side. To be followed by radiation to the left side ( cant have rt side done because it was radiated 11 yrs ago).

OK, so now the burning question in my mind. Sense I am triple negative and will not have any hormone therapy and can not have radiation on my rt side, and there is no plan to remove nodes on the rt shouldn't I have chemo both before and after surgery?  How do they know there will be no residual cancer  on my right side especially sense that side is Inflammatory BC?

I ask my oncologist and she said it would be "out of the box".

What do y'all think? 

Caseysmom

Kimmie:

I went through 4 large doses of a/c followed by 12 weeks of taxol followed by mastectomy, tram flap and node removal. I did have several nodes come back possitive for cancer and about two months after surgery I went through another 3 1/2 months of chemo followed by 7 weeks of radation.

If you have any lymph nodes come back I would have you oncologist take your case to her tumor board committee to find out what those physician's think.

Good Luck!

I will keep you in my prays

Laura

kimmie39

Im having 6 cycles of taxol/carboplatium then double mastectomy then 6 wks radiation.  They already know the cancer is in my nodes but doc didn't seem enthusiastic about the chemo before AND after suggestion.

Any advise on how to ask her again? She doesn't have me scheduled to see her again till December after my surgery. I don't think she follows me enough. 

Caseysmom

Kimmie:

I do not think that your doctor is not seeing you enough. When I was going through chemo the week that I did not get chemo I saw the doctor. 

My suggestion to you is get a second opinion and when you  call insist that you get in right away explain to them that you have IBC because it is so uncommon they may not know about it.  I do not know if you have a cancer center like what we have here in Michigan Detroit area we have Karmanos Cancer Institute it is associated with Wayne State University School of Medicine.  Cancer centers associated with medical school are more current on different treatment that can be offered. But I would defiantly get a second opinion.

Good luck!

Laura 

kimmie39

Hi thanks for talking to me about this. Believe it or not Im going to Johns Hopkins in Maryland. Its ranked no 1 in 5 areas and Number 4 in cancer in the country. I feel left out to dry. Should I go to my local Oncologist for the second opinion? I just cant believe she doesn't want to see me until after surgery. Actually shes only seen me three times. The third visit they lost my appointment and didnt have me on the schedule and she added me in then rushed me thru and didnt have my chart with her.

Im disappointed.

What would you do? 

Caseysmom

Kimmie it is my pleasure to talk to you.    

It blows my mind that John Hopkins which I do respect there reputation would do this. If I were you I defiantly would make an appointment with your local oncologist.  This is to aggressive of cancer to mess around with.  I would also suggest to bring someone with you to that second opinion that way they can help you remember everything you want to ask this physician and help you remeber what he/she said.  I know that this helped me a lot.

I know that you will kick this cancers butt.  I am always here for you!

I will be praying for you!  Please keep me posted on your progress.

Big hugs from Michigan!

Laura

Dnicoletto

Never be afraid to bring a pad and paper with your questions and write down their answers. It is so great to be able to go back and look.

Good luck with everything!

~Dorie

Anonymous

I think you should see about getting a consult from MD Anderson, the leading research and treatment facility for Inflammatory bc in the US.

kimmie39

Thanks!

Just for your info let me tell you what MD Anderson did to me.

When I was first diagnosed I researched all the hospitals and called MD Anderson for a second opinion.  They told me if I was going to seek treatment there they could See me in 72 hrs. but if I was not going to seek my treatment there an appointment would take three weeks .  I couldnt wait three weeks with IBC so the following Monday I called them back and committed myself to having my treatment there. At that time they told me the doc.was on vacation and to send my records and when he returned in 1 1/2 wks he would review them and make me an appointment. I think I had a total melt down at that point! I ask if there was ONLY one doc that could review my records and was told yes that there was nothing they could do for me until he came back. Well I knew I couldnt wait that long to start treatment and Called Johns Hopkins and thats how I started treatment with them.

Im not opposed to going to Texas but they were not equipped to take patients unless this one doc was in. My worry was what I that one doc gets sick or has an emergency?

Anyway I still believe MD Anderson probably has the most experience with IBC  but I have doughts as well.

But now Im really disappointed with the care Im getting from my medical oncologist at Johns Hopkins. Im REALLY not that hard to get along with. But I take an active role in my recovery and I think that exposes me to more aspects of my care.  I also get the feeling a large number of docs really dont want to deal with what the patient thinks. 

This has been weighing heavily on my mind.

I was thinking about how the two times Ive seen my doc. Both times shes made comments about having patients who dont respond to chemo. She says it in a way that makes me feel like I should feel guilty for asking so many questions or I should be happy its going well and suck it up.

Of course some of this is gut feelings, but my gut is more right that wrong mostly.

The one thing Im sure of is I need to change something.  My husband thinks I should call my doc and schedule an appointment to talk about these things, am not sure thats the best answer.

I called the Avon breast center at Hopkins and left a message with Lille Shockey (Patient care director at Hopkins and a world renowned speaker on breast cancer) she was with me when I was diagnosed . I gave her a bit of my concerns and ask her to call me. 

Well once again Thanks for letting me bend your ears. 

Anonymous

Kimmie

I would still have kept that 3 week appointment for a consult WHILE I started treatment at Johns Hopkins.  You could have started and then adapted whatever treatment recommendations MD Anderson would have to offer.

Most oncs are willing to do this.  My onc is very receptive to letting me make active decisions in my teatment and follow up.  If I had gotten a consult with MD Anderson and they had recommended a different plan than was in place, my onc would have let me go with whatever plan I wanted.  Any good onc will do this. 

Why don't you ask for another consult appointment with MD Anderson just to have a second opinion from a knowledgeable source for Inflammatory.

Caseysmom

Kimmie:

I agree with AlwaysHope about making an appointment with MD Anderson however I do agree with your concern about only one doc who takes care of IBC patients.

Typing this another option popped into my head is since John Hopkins is a teaching hospital I know that there should be a division chief of oncology.  I would bring my concerns to him/her about your oncology.

Keep us posted about what Lillie has to say.

Very Big Hugs from Michigan!

Laura 

kimmie39

You guys are great.

Ill put some thought into the second opinion MD Anderson does have the only inflammatory breast cancer clinic.

 Ill keep you posted.