Need Help-- Surgery Decisions

Hi , I have only posted here a couple of times but read daily. I was dx 4/21/05 with bc, er/pr+, her 2+++, probably stage 2-3. My tumor was humongus 8-11 centimeters literally covering my whole boob from one side to the other. I saw the surgeon and he wanted to try and shrink first, so I saw the onc. I started AC/Taxotere x 4 every 3 weeks. After 1st--tumor shrunk by 1/3, after 2nd--tumor shrunk 90%, after 3rd--can find no tumor. I saw my surgeon yesterday and he was shocked at the complete response I have had, however I was undecided as to whether or not to have lump. or mast. and he is really not able to give me stastics on my chances of reoccurrence. He said if it had been less than 4 centimeters my chances would probably be 10% or less. The reason that I am so unsure what to do is I have always had problems with infections, a splinter can cause me to have to do a round of antibiotics, I broke my hip last year (big dog-long story) and had to remain in hosp. because of drainage issues. If I have mast., I will want both removed and no re-construction, but if I can do lump. which I feel is a little easier maybe I won't have as much trouble with infection. It is unknown if there is node involvement, my scans were inconclusive 2 that looked a little off but not necessarily indicative of cancer. I am very happy with my onc and surgeon and both are trying to research this for me, so that I would have some statistics to make an educated guess, but at this point he's not really sure if I choose lump. how much he would take until he got inside and looked. After surgery I will have 12 herrceptin/Taxol, radation and continue on herceptin for 1 yr., also treatment for the er/pr+. Anyone with any comments would be greatly appreciated. Sorry for the length but I 'm still not sure I explained everything---Thanks

Dear Donna,

This is a very difficult decision!

Research has shown that in cases similar to your own, there is no survival advantage having a masectomy vs a lumpectomy. As well, in support of the above, given your history of surgical complications and recent evidence suggesting a correlation with HER2 activation (and possible cancer activation), and surgical trauma; if it were my wife.....

That's 3 reasons for Lump and I can't think of any for M. Don't stop with me as I would be interested in others views.

Regards,
Al (from the cottage)

Wow Donna!
What wonderful news of such a dramatic response from neo-adj chemo! Now,what to do...?
As Al mentioned, data shows there's no survival advantage of a mastectomy v. lumpectomy, & with your history of healing difficulties, why put yourself thru it? Remember, surgery & radiation are considered "local control". It seems that follow up w/ "systemic control"- eg.chemo,herceptin,hormone tx-is the more significant factor. Thank God for Herceptin!
When I was dx'd 3 yrs ago, the primary tumor was ~3cms, but surrounded by a whole lot of rigid tissue that was "inflammatory response" to the tumor. About 1/4 of my breast felt rigid & dense. Even though I was a good candidate for a lumpectomy, I recall feeling so uneasy about the surrounding inflamed tissue that I kind of wanted it ALL taken out. My surgeon assured me that once the tumor was out, the surrounding inflammation would resolve & didn't pose an increased risk in local recurrence.
She was right. I opted for a lumpectomy & have a simple 3 inch scar that is barely visible today. Even though I had 12/12 pos. nodes, I've not had a problem with controling recurring disease in my breast or nodes. (now it's the stubborn spot in the liver that's been such a problem). It sounds like you're covering all your bases w/ the treatment for local & systemic control.
It really is just a matter of your own comfort level & peace of mind.Will you feel comfortable just having a lump. and radiation for local control, knowing that chemo, hercep & hormone tx will do their job systemically? Or do you just want the breast tissue gone?
It's a tough decision - it's your body, your choice.
Good luck to you!

Thanks Al & Jessica for responding, I really appreciate it so much. Although I am relatively new to this subject it just seems to me that alot of women have a mast. to reduce their fears of reoccurence. I mean many of the women have the option of mast. or lump. but choose mast. to get rid of it all. It's a scary thing but I'm dealing well, I have a very positive attitude that this is something I will beat, I am just having alot of trouble with the surgery decision. I've got a couple of weeks to decide and still have to talk to onc again, so one day at a time. Thanks again I will let you know what I decide.

In 5/01 I had lumpectomy, 1.8cm invasive ductal carcinoma and DCIS with comedo, clear margins, ER+PR+Her2neu+++, no nodes, followed by FAC (total 6, 1 every 3 weeks), 30 days radiation, Tamoxifen 3yrs. then Aromasin. In 3/05 my Internist thought she felt a lump in treated breast, and I had a diagnostic mammogram & ultrasound. Tech & doctor didn't see anything, but didn't have my mammograms from 7/04 to compare. I was called back for a biopsy, and tiny microcalcifications were removed - invasive ductal carcinoma. I had a mastectomy in 4/05, and the pathology was DCIS comedo type, ER-PR-Her2neu+++. All of the invasive carcinoma was removed during the biopsy. I tell you this because in retrospect I wish I'd had a mastectomy the first time around, because of aggressiveness of this cancer. Now I am having 12 weekly treatments of Taxol & Herceptin, followed by Herceptin once every 3 weeks for a year. All of my tests were negative for mets (CT, bone scan, MRI/checking lung, bone, liver, abdomen, brain, breast). I begged my Oncologist for a brain MRI, which she got for me. Also, I went for a second opinion, and a breast MRI was recommended, which I had before my surgery. If you decide to have a lumpectomy (statistically the same as mastectomy if combined with radiation, but I question if it's true for Her2neu+++tumors), you might want to ask about mammosite, a new way to deliver radiation directly into the lumpectomy scar, delivering dose to treated area and reducing damage to more distant tissues/organs. I was not a candidate for 2nd lumpectomy because of full radiation to breast in 2001 and the gold standard for recurrence is mastectomy. Postoperatively I had 2 drains, only spent 1 night in the hospital, and was on antibiotics for 10 days. Hope my experience can help you decide what's best for you.

[Rozebud]

Donna - congrats your your response! That is wonderful.

Honestly, I think it partially comes down to your age. The older you are, the more comfortable I'd be doing a lumpectomy vs. mastectomy. There is some evidence that in younger women only, lumpectomies have lower survival and recurrance statistics. The older you get, the more those are close to being the same. Meaning, if you're in your 30s, I'd more seriously consider the mastectomy, but in your 50s, I think it would be a coin toss for me. Good luck in your decision.

Hi Donna,
I know that you have a difficult decision to make. Here are my thoughts:
If knowing your lymph node status would help you to make your decision, maybe you can schedule a sentinel lymph node biopsy by itself - I originally was scheduled to do neo adjuvant chemo (like you did) and the plan was to just do the sentinel lymph node biopsy by itself. This procedure can be over 90% accurate and is not very invasive - an outpatient procedure.
If your lymph nodes are negative (like mine were - THANK GOD), you may feel much more comfortable with just having the lumpectomy followed by radiation. You can even tell your surgeon to continue with the lumpectomy if your nodes are negative.
I have had excellent results with my treatments - I am 43 years old - had a 2.1 cm. invasive ductal carcinoma, ER and PR negative, Her2neu positive, high grade, negative nodes
My treatment was 1) Lumpectomy with Sentinel lymph node biopsy (I told the surgeon to do a complete axillary dissection only if the sentinel lymph node was postitive)
2) TAC Chemotherapy - 6 treatments every 3 weeks
3) 33 Radiation treatments
4) Just started Herceptin treatments - every 3 weeks for a year (No side effects so far)
There is so much research that confirms that a lumpectomy with radiation is just as effective as a mastectomy. I know that saving your life is much more important than saving your breast but I know that I am thankful that I decided on a lumpectomy. It sounds like so far you have made all of the right decisions. Please e-mail me if you have any other questions. Good Luck!
Take care,
Jamie

Thanks to all who responded, I am trying to gather as much information as possible. Again loosing a breast is not a problem if I make that decision I will have bilateral. That said it is the surgery that is a problem for me. I am 55 years young to answer that question, no previous health issues. I just wish they come up with some stats on my chance of reoccurence if I choose lumpectomy over mastectomy. Also I plan to ask about mammosite and where I would have to go if this is an option for me. I will eventually make this decision and let everyone know but for now I have at least one more week to gather information. Thanks

I am not an expert so don't feel qualified to recommend--but can share what I did and have heard other dr's say. First, it is fantastic to hear that you had such a great response. I did have a question--if there is no more tumor how can the dr's do a lumpectomy--what will they be removing?
I had a bilateral mastectomy, initially with the intent of doing future reconstruction so had extra skin left. If anything, this has become a non-issue and wish I had it all completely removed. The prostheses work fine, thank you--but then again I have been married to the same wonderful guy for almost 29 years and was 50 at time of dx--might have felt differently if younger or single.
I also had radiation. I thought, at the time, I should have had more radiation--didn't get the boost. I do recall that those with lumpectomies seemed to find radiation a bit more difficult--but don't know if that was because they got the boost--not sure--but if my memory is correct, do think it may have been more uncomfortable for them.
Take care and wishing you the very best!

Guest,
You are right, that was one of the problems my surgeon discussed, because of my response to chemo it is questionable how much to remove. He said he would do lump. but if clean margins were not obtained he would either have to try again or I could have the mast. I see the surgeon again tomorrow and my onc. on Wed., hopefully I will have my surgery decision this week. Thanks again for all opinions.