recurrence IDC, 2 round of chemo ?

jeanna

This is my first time on the computer on any subject of discussion. I am trying very hard to make an important decision on my next step of treatment. I haven't found much on the subject I need help with.I was diagnosed at 42 with IDC and lymph node involvement. I started out with a chemo.regime to help shrink the tumor in my left breast and to hopefully kill off any cancer cells that may have escaped into other places in my body. I had a lumpectomy with clean margins and axillary node removal. I went trough 7 wks/5days per of radiation therapy and finished off a 12 month treatment of Herceptin. I started taking Tamoxifen and was hopeful that after a little over a year of treatment that I was back on a path towards a somewhat "normal" life. The original tumor was 5cn. and 2 lymph nodes were positive. I had to wait 6 months for a mammogram due to scar tissue healing. I started to feel a lump in the general area about 3/4 months after surgery. The doctors suspected scar tissue and swelling and fluid retention. I knew it would be hard to read but I asked for an early mammogram. No major finding, just repeat at the original 6 month period. I went back at the 6mnths. and got a report and had checkup with my oncologist. Report read recommend 6 month follow up (probably benign not cancer). So I voiced my concern with my doctors and they said not to worry that if any was seen they would have suggested more tests,but if it made me feel better that would voice my concerns to the radiologist. I was glad because I couldn't understand why they hadn't checked normal/negative no evidence of cancer follow up with a 6 month checkup.Needless to say I got a phone call at work the next day asking me to come back out for more films. The radiologist had compared the film I requested at 4mnths to the recent 6mnth film and had seen something he didn't like. So I had more films and then another biopsy and low and behold I have cancer again in the same breast.I was not surprised but I thought now what. It is a new cancer or was'nt everything removed the first time. My surgeon said that he would remove the breast and they would have a better idea after the pathology report. They say it is close enough to the original site that they feel in is recurrent. I asked if that meant did they leave some behind from the first tumor. The answer was that it didn't matter because if some had the chemo.,radiation and Tamoxifen should have killed it and prevented more growth. In the 5/6 months since my last treatment the new tumor had grown to 1.7 cn. It has all the same markers of the original cancer.Now comes my dilemma. My surgeon feels that since he removed the breast he doesn't really think that further treatment is warranted. My oncologist tells me that this a very "gray" area. If I am a gambler and feel "lucky" don't do any more treatments and hope that I am cancer free and or he tells me that we can do a whole new year of treatment with chemo. and Herceptin but A) it is going to be trickier.He said I will be more susceptible to the negative effects and of course I will lose again the hair that is finely starting to look nice again ( devastating) that just like the first time If there is any cancer that it may be resistant to the treatments Ex: the second tumor that grew to 1.7 cn. that quickly and despite the treatments. I also have to take into consideration the damage that Herceptin does to the heart. I had MUGA scans every 3 months during the first year of Herceptin and couldn't do my very last one because it had started to effect my heart too much. I'm leaning towards treatments again.If I dont do the treatments and I end up with cancer anywhere else in my body he says it will be incurable. I have to decide before 6/11. If anyone has had to make a similar decision or can give me an opinion I sure would appreciate it. Thank you.

dlb823

Hi, jeanna ~  I haven't been in your shoes, but it sure sounds like they may have left something behind the first time around.  Also, the comment from your oncologist about being a "gambler" and having good luck would not set well with me at all!   If I was in your position, I would get a second opinion ASAP from an entirely different medical team.  Are you near an NCI-designated cancer facility?  That's where I'd go now -- because they see far more bc than other facilities, which means they will have experience with cases like yours:

http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

I'm also curious to know if you had an MRI before they did your lumpectomy.    Deanna

jeanna

Hi Deanna,

 I had an MRI before the lumpectomy and the mastectomy. The hospital I go to is one of the best cancer centers in our vicinity. It is roswell park in Buffalo, N.Y. and I drive an 1 1/2 one way just to go there. I think the "gambler" comment was his way of telling me that he feels I should do the treatments again. I think he is afraid of out and out making recommendations incase I go through it all again and it doesn't help (or was unnecessary).

flash

Sorry you're having to deal with this question.  I think you have to question, if it came back a 3rd time or developed to mets, would you blame yourself for not having done treatment again?  Getting a second opinion is probably smart but ultimately, only you can decide.

good luck. I hope it goes well for you.

jeanna

Thanks flash. You are right I would end blaming myself and second guessing if it was because I didn't do another round of chemo. and Herceptin.

Thanks again

nelia48

I'm so sorry that these decisions are weighing on you like this.  Just doesn't seem fair, does it?

As I read your post, my gut reaction was that, if it were me, I'd go for the treatments. I'm not a gambler.  I don't believe in luck.  But I do believe in making intelligent decisions, praying a lot, and going for what's out there to help me.  I'll keep you in my prayers, believe me!

Crystalady

It's not fair that we have to go through this.

If it was me I think I would do whatever I could to try to get rid of it. I did, and at least I had 10 yrs where I was able to get back to some sort of normality before I got secondaries. 

The most important thing is that you know then that you have done everything possible so you won't have regrets if it does come back.

In gamblers terms I guess it's just the luck of the draw. I hope you have a win with whatever youdecide to do.

dlb823

Hi, Jeanna ~  Just wanted to say that I'm glad you're being treated at such a fine facility, and thanks for clarifying your onc's comment.  Sorry I didn't take it right initially, but it makes sense the way you explained it. 

I'm so sorry you're going through this, and I hope some others who have had similar experiences will weigh in to help you with your decision.  In the mean time, you might still consider a second opinion just to hear what another institution would advise you.   I believe either JH or MSK do phone consults.  Sometimes we just have to hear that one tidbit of info' put a certain way for it to help with our decision...       (((Hugs)))   Deanna 

jeanna

Thank you all. I am so glad that I decided to join this sight. I have always had to be the strong person in my entire family and sometimes it just gets so exhausting. I'm not the type to seek solace from others because I'm afraid I will fall apart and not be able to pick my self back up. I'm afraid if I weaken even the slightest that there will be no turning back. I am very thakful that I came across this sight and that I can connect to others without fear.