Anyone at high risk of recurrence..

Fitztwins

Thinking about doing a Clinical trial? I asked my oncologist today if I could get into one. I am at the 50/50 mark (thanks to herceptin), from the 60/40...I still want to add more in my favor!

Janis

Margerie

Janis, I am looking into the vaccine trial (for her2+++) at the Univ. of Washington in Seattle. There is info over at the her2support.org.

You can also ask your onc about taking tykerb in March when it will be available. I elected second year of herceptin and will probably try the tykerb.

It may be overkill for some- but I am willing to do whatever I can.

Margerie

Fitztwins

That is the one I was thinking of too!

Beesie

Janis,
Are you familiar with this website? http://clinicaltrials.gov/ct/gui

Fitztwins

yes. I gave it to my doc. He was like "hmmm, I don't know this one, but I will look it up!"

My Dh was like 'why would you do this?" Men....

AlaskaDeb

I would love to find a trial for triple negative girls. I was stage 3C and not being in any type of follow up treatment makes me crazy!

Deb C.

watergirl

Deb, I get treated at Seattle Cancer Care Alliance. At my first 3 month followup I told my oncologist to keep me in mind for any clinical trials that they may conduct (I was thinking about the blood test I had read about recently). It stuck with me that her response was that she would keep me in mind and that there was some promissing research in vaccines that I may be able to participate in at some point. I am triple negative. This was before I had heard about their Her2 vacinne. My guess is that they are trying to broaden that Her2 vaccine to include triple negatives. From previous reading I have learned that triple negative basal cell type cancers can over express the HER1 gene leading some to wonder whether this overexpression could be targetted like Her2. Just wanted to let you know that someone out there may be thinking of us! BTW, I appreciate how you infuse your energy and sense of humor into your posts. I often end up smiling and sometimes giggling after reading them

cp418

http://www.komen.org/intradoc-cgi/idc_cg...amp;cc_id=38627

It appears everyone is high risk who had lumpectomy if I understand this article correctly. This is depressing. Joann

Beesie

Interesting article but a bit different than what I'd previously read, and it seems to be missing some critical information.

My understanding is that anyone who's had breast cancer, whether DCIS or invasive, is at significantly higher risk of getting a 2nd unrelated breast cancer, i.e. a new primary cancer. This could be either in the same breast or in the other breast. I think the reason for this increased risk may simply be that having already had BC once, your body has indicated a propensity to get BC so it's more likely you'll get it again. The actual reason that we each get BC and are again at higher risk could be different for everyone.

For women who've had a lumpectomy, this 2nd BC could occur in either breast. For women who've had a single mastectomy, this 2nd BC is obviously much more likely to occur contralaterally. I wasn't aware that there was any difference in the rates of contralateral BC between women who've had a lumpectomy for BC or women who've had a mastectomy. The Komen article never references mastectomy patients at all; as I interpret it, it appears that the study was done only with women who've had lumpectomies. Personally I would be very surprised if the rate of contralateral BC, unrelated to the first BC, is higher for lumpectomy patients than mastectomy patients. The problem for all of us is that it's higher for anyone who's already had BC, regardless of the type of surgery.

Here's what the American Cancer Society says about this. It doesn't suggest any difference between women who've had lumpectomies and those who've had mastectomies.

http://www.cancer.org/docroot/CRI/conten...st_cancer_5.asp

"Personal history of breast cancer: A woman with cancer in one breast has a 3- to 4-fold increased risk of developing a new cancer in the other breast or in another part of the same breast."

cp418

Actually after going back and reading this article again I feel there is not enough information. There are no details if these patients received chemo and/or radiation or hormonal therapy. Since the time frame is 1977-2000 the Aromatase Inhibitors were approved in the late 1990's so again did these statistics include some of those patients? Yes, where is the comparison to patients with bilateral mastectomies - - what are those numbers?

I suppose what continues to confuse me is if a patient had bilateral mastectomy, I would think they are at lower recurrence risk then someone who did not. Then if true then this article makes sense to me.

Beesie

I don't believe that the Komen article is talking about recurrence - I think it's talking about the risk of getting a new unrelated BC in the other breast.

Recurrence usually occurs within the first 5 years (although I know it can happen much later than that). This article is talking about the contralateral BC risk within the next 20 years, with an average time of occurrence being 8 years. The article also says that the risk is the same whether one originally was diagnosed with DCIS or invasive BC. For someone with DCIS, it's technically impossible to have a recurrence in the other breast since DCIS doesn't spread and can't jump to the other breast. That's why I think the article is talking specifically about a second breast cancer risk, not the risk of recurrence.

If the article is talking about a new BC, then I don't think it matters if one had chemo or radiation for the first BC. Those treatments reduce recurrence rates but I don't believe they reduce the likelihood of a later cancer. If anything, I think they might slightly (very slightly) increase the risk. Whether one took hormone therapy is however relevant, since hormone therapy works both on reducing recurrence risk and reducing the risk of a new BC.

I read the article as implying that having a lumpectomy leads to a high risk of contralateral BC. My understanding is that the risk of contralateral BC is the same whether one has a lumpectomy or a single mastectomy. On the other hand, someone who has a bilateral mastectomy will have a much lower risk of getting a new BC, although it's still possible (about a 1% risk, I believe). These women also have a much lower recurrence risk.

I think that the study is useful in pointing out to BC patients the high risk of getting a 2nd BC in their other breast, but I think it's flawed in not looking at both lumpectomy and single mastectomy patients.

Chrysalis

Hi Janis,

I recently started on the Tykerb (Lapatinib) expanded access study. I'm treated at MD Anderson in Orlando, and they are one of the participating treatment centers.

Lapatinib is expected to get FDA approval in the spring, but until then GSK is still running its expanded access program (LEAP) so they an get the drug to as many people as possible.

Xeloda is given in tandem with the Lapatinib, as it has been show to enhance the efficacy of the Lapatinib. I've just finished my 3rd cycle (Lapatinib all the time, but Xeloda on for 2 weeks, off for one week) and will get my first MRI scan on MOnday to see what the effect on my one bone mets lesion on my L-3 vertebra has been.

I reduced my dose of the xeloda after the 2nd cycle, because I had such a hard time with the side effects. I was beginning to think that we were trying to put out a match with a tidal wave.

I dropped the dose by 25%, and it made all the difference in the world. This last cycle was a breeze compared to the first two, with the exception of the hand-foot syndrome which has been an on-going pain.

I will repost to this thread when I get my results to let you know. Have the scan on MOnday and the doc visit on Tuesday. I'm pretty optimistic based on the ASCO report this summer.

Renee

cp418

Bessie - Thank You for clarifying the terminology. I kept using the word 'recurrence' which is different from a new contralateral cancer in the other breast.

I am IDC, 1.8cm stage 2A grade 2, 1 positive node with lumpectomy, chemo, rads, next ooph to be able to start AIs. This article really upset me as I've been continually circling back to considering preventative bilateral mastectomy. The stress is really wearing me down waiting for ooph appt and currently not on any preventative anti-hormone meds. Physically I look and function BETTER than before BC after changing diet, exercise, weight lost. I really should be thrilled with the physical results with barely a noticable 2 inch scar and no skin issues with rads (Miracle!), but mentally I'm a basket case. So I'm very confused and undecided to pursue bilat mast but know I can't mentally function long term with this stress level. I think I need to talk to surgeon again and consult plastic surgeon as well. (I'm too small for the TRAM or GAP procedures and would just would be content with nipple construction only if possible.) Joann

Beesie

Joann,
You have to the make the decision that is the easiest for you to live with long-term. Although I had early Stage 1 BC, I had no choice but to have a mastectomy because I had DCIS throughout my breast. Because of that, my risk of recurrence is only about 1%. Like you, I was too small for a TRAM or DIEP, so I had reconstruction with an implant.

With my history of BC and having had 4 biopsies on my other breast, I know that I'm at high risk of getting BC again. I considered having a bilateral mastectomy, but decided against. Having already lived with being high risk for so long, I'm know I can deal with the fear. I'm comfortable with the process of mammograms and ultrasounds and I always expect to be called back for some additional test. And having been through BC, I know that if I get BC again, I can deal with it. So for me, I didn't need a bilateral mastectomy for peace of mind. I completely understand however that for many women, the stress level from the fear of getting BC again is so high that for them, a bilateral mastectomy is the best option.

Have you talked to your oncologist about your risk level, both for recurrence of your current BC and for a new BC at some point in the future? With your plans for an ooph and by taking AIs, you may be reducing your risk to quite a low level, maybe even lower than the risk level of an average women who hasn't had BC and probably lower than your risk was before you were diagnosed. If that's the case, how would you feel? If you are still uncomfortable, then a bilateral might be the best decision; on the other hand, if you know that your risk is low, you might be able to move forward more comfortably without additional surgery. If you don't have this information from your oncologist, talking to him or her might be a good next step. Good luck!

cp418

Bessie - Thank you SO MUCH for your very logical and understanding response. I keep tetering on the edge and this is exactly what I needed to continue forward with my future schedule. I have the Bone DEXA scan and appt with gyn doctor scheduled 12/11 and 12/13. We will discuss scheduling the ooph surgery followed by starting the AI prescription (I already asked onc for Femara). My next mammogram is 4/2007. I just finished radiation treatment last week with insignificant skin issues but am stressed because I don't have my daily bottle of AI pills yet. I need to get through the next few weeks and then hopefully some of the stress will get diluted. Exactly what you described regarding risk details will make a more comfortable difference once I get the ooph and AI pills. I now it's the waiting with the holidays coming soon.

I'll wait to see what mammogram shows and have an in depth discusion regarding future risk. The risk will alwauys be there but I want to be take my best shot at controlling the beast. Thank You AGAIN!! Joann

Lindy57

I was diagnosed with LCIS & DCIS 11 months ago. I underwent radiation. I had a recent ultrasound that came back showing Atypical ductual hyperplasis. I had a biopsy and am waiting for the results thta it is only ADH. I was on Tamoxifen and could not tolerate it, I am premenopausal and can't go on anything else. I feel like a walking time bomb with the wick lit - not knowing when it will go off.
My oncologist is going to a bc convention in TX next week, and is hoping to bring back soemthing I could go on. I can't live my life for the outcome of an ultrasound every 6 months. I mentioned a mascetomy - and they make me feel like I am over reacting. When is enough - enough?

Anonymous

I know some of what you are feeling, My situation ia a little bit different. I was diagnosed with LCIS 3 years ago, had lumpectomy, on tamox ever since, close monitoring every 6 months, now alternating mammos with MRIs. (see oncologist every 6 months on an alternate schedule, so doctor visit or test every 3 months). I feel very fortunate I did not have to undergo rads or chemo, but on the other hand, I do not have that "added insurance" that rads or chemo offer.

I'm assuming you had lumpectomy before the rads and that the area with LCIS and DCIS was localized. My surgeon explained if localized---lumpectomy, if widespread--mastectomy. The thing with LCIS is the risk remains constant, it does not go down over time as with DCIS or invasive bc, and both breasts are equally at risk. For now, I'm ok with the tamox and very close monitoring, but I think we each have to decide for ourselves when "enough is enough". I pray your biopsy turns up nothing else and that your oncologist comes back with some new helpful suggestions for you.

Chelee

luke04, Since the tamox did not work out for you and you are perimenopausal. Why can't you onc give you something to shut down your ovaries such as Lupron injections or Zoladex implant? Then that would put you in menopause and you could take an AI such as Femara or another one. (Just a thought.) Thats what my oncologist did with me. At least you will know you had something for protection. You might want to run it by your onc and see what he/she says?

Or they might be totally against it...one size doesn't fit all and your onc might have a reason for not wanting to do that. But you could ask. Hang in there.

Chelee

Lindy57

I appreciate you responding. I don't feel so alone knowing others are going through the same thing. Both my LCIS & DCIS were in situ. My onc is going to a BC conference in TX next week and hopes to bring back something new I can go on. I also am going to Sloan Kettering Cancer Hospital in New York City. I appreciate your prayers.

Lindy57

I will definately research both options you suggested and call my onc. I just don't feel comfortable sitting back waiting for something to happen. Thanks for writing.

cp418

I found this article but keep in mind the data is old. The patients evaluated are from the 1970-80s.

http://www.jr2.ox.ac.uk/bandolier/band107/b107-2.html

Chelee

luke04, It sounds like your oncologist stays on top of things! He must be going to the "San Antonio Symposium". Big yearly breast cancer conference. There are lots of new things coming out and new information on cancer drugs.

So your going to Sloan for treatment...one of the very BEST. I would just wait till he goes to that and see what he comes up with. There has been much talk about whats coming up this year at that conference. I hope they can surprise us with some really good news.

You hang in there...your in safe hands.

Chelee

Lindy57

Chelee,

Thanks for writing. I was happy to hear the conference is so a big event. Sloan has accepted me as a patient, but they can't give me an appointment till my biopsy comes back. There are different options depending on the results. My Mom who went with me for surgery just told me the dc told her it would be two weeks for the results, while I was in recovery. Prior to surgery he told me and her it would be one week. It makes me wonder if they found something and have to do additional stain testing in it. It will be one week tomarrow and there is nothing back yet. How do you get the information as to what is coming out next year?
Thanks
luke

cp418

luke

See my post with the link to the San Antonio Breast Cancer Symposium Abstracts. Best wishes, Joann

ps123

Janis - I was diag. stage 3 in July 2002 so just missed doing dose dense and also just missed doing herceptin so am going to do the Tykerb/placebo trial. It a random/double blind trial to see if Tykerb is helpful in preventing recurrence. You get randomized into either getting Tykerb or a placebo (I want the Tykerb! ). You have to be NED and also can't have had herceptin. I should be starting soon. I just need to decide whether to start now or wait til after the holidays.

Pat

JaxsonHarley

I am not sure if this is the right place to be posting this.I am new here, just found this site. I am 45 yrs old. Mother had Breast cancer(diagnosed in her 40"s), metastisised into lung cancer 10 yrs later,she passed from this 2 months from diagnosis.I was diagnosed at 40 with DCIS. Had 2 lumpectomies to get clear margin, and then radiation.Recent mammos show a shadowy area in same breast. repeated mammo's, had ultrasound, then referred to have an MRI done. MRI people recommended MRI guided biopsy. Had that, report shows some Atypical cells from biopsy. Surgeon has called back to set up another appt. in 2 wks. I am trying to read all I can so I can go to this appt. with some knowledge. I am thinking bi-lateral mastectomy, to prevent further recurrance. Since I have already had the disease, I am not comfortable with the "wait & see" attitude. I prefer direct & prompt treatment to prevent any further disease, and Husband wants this also. Am I thinking to radical? Or am I founded in thinking this is the way to go? Would love any feed back on this, Thank you, Jackie

Erica3681

Jackie,

From my experience, espcially given your family history, I'd say your thinking is totally well-founded. I had bc three years ago in my right breast (DCIS plus small invasion) and, like you, had two lumpectomies and radiation. This past summer, I was diagnosed with DCIS in the left breast and they couldn't get clean margins, so I knew I had to have a mastectomy. My decision: bilateral mastectomies. Even though there was no problem in the originally-treated breast, I just didn't want to worry about dealing with bc a third time. There are no guarantees, but I wanted to do everything possible to prevent recurrence. My doctors totally supported me in this decision.

I have a good friend whose sister is a breast surgeon. She herself had DCIS in one breast and ultimately had both removed. She said she's NEVER had a patient who had bilateral mastectomies and regretted it later.

Another consideration: whether you choose to reconstruct or not, the symmetry can be helpful. I chose no reconstruction and love feeling in balance. And when I wear prostheses, I can be any size I want. With recon, from what I understand, you can achieve a real match between the two breasts--harder with only a single mastectomy.

Don't get me wrong. I do miss my breasts, but I don't regret for a minute having bilaterals (my surgery was ten weeks ago).

Barbara

JaxsonHarley

Barbara, Thank you so much for your insight.My right has never had a problem, but with this new finding in the left, I am just not comfortable with the "wait & see" attitude some seem to have.I just want to eliminate any possibility of recurrence or even having one of these abnormal cells settle in some where else, that really worries me. I will probably opt for reconstruction, with implants if possible. I am not sure how they would proceed after having one side radiated already. I am sure I too will miss the "twins" but won't regret my decision ever. Your surgery was 10 weeks ago, how are you feeling? About how long of a recovery time would I be looking at? Thanks again, Jackie

Erica3681

Hi Jackie,
I recovered very quickly from the mastectomies. My biggest problem was hypersensitivity of my skin for a couple of weeks (starting about a week after surgery). Once that subsided, I really felt great. Since I didn't have implant reconstruction, I didn't have to deal with expanders, but my impression is that for most women with expanders, the recovery is also pretty quick, though they go for fills for several months. You might want to check out the Reconstruction board--lots of helpful advice. I considered implant recon, though I was told that radiation makes it somewhat more risky. But my oncologist said she has many patients who had radiation and did fine with implants. Good luck. Let us know what you decide to do.

JaxsonHarley

Barbara, thank you for talking to me. I guess I will check out the reconstruction board to research further. I will let you know what happens, Jackie

scarednancy

Hi,
I'm sorry to hear how worried you are. I am just starting this journey. I'm curious why you couldn't take the Tamoxifen. I will be taking that for 5 years and wondered what I had to look forward to. I am currently waiting for my OncotypeDx results to determine if I need chemo. I know I will get 33 rads and tamoxifen. Thanks for your help.