What are the stats
Please could you help me. A friend of mine has recently been diagnosed with IDC, she is concerned about several things, and I thought you might be able to give us some pointers.
Her diagnosis was quite good, IDC .6mm, Stage 1, grade 1, 0/1 nodes, ER/PR + and HER2 -. She had a lumpectomy, and the treatment plan suggested is, Rads + Tamoxifin. Since my friend is suffering from Thrombosis, Osteoporosis and some other health complications (and is quite a weak person), she is thinking of rejecting this suggestion and not taking the rads or the Tamoxifin. She would like to know, are there any stats that could help persuade her decision, ie, if she doesn't do either, what are her reoccurrence chances (in %) and if she does one or the other, etc.
Any information you could provide would be greatly appreciated.
Shelley
Comments
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Has she been to see an Oncologist? They will be able to tell her stats, treatment versus no treatment. I personally have always been told with invasive cancer, no matter how small, that lumpectomy is always followed by radiation. If she had had a mastectomy, then most likely no rads if they had clear margins. Good luck to your friend with her decisions. I know it is mind boggling the choices we have to make regarding this disease, and sometimes wonder myself if the treatment is worse than the disease. Take care!
Dee~ -
There is a site that can calculate stats of treatment outcomes (including choosing no treatment). Just input her age, stage, node involvement etc... and it will give life expectancy stats.
http://cancer.lifemath.net/breastcancer/therapy/index.php
I have had lumpectomy, chemo, and rads... tamoxifen is next. It is no fun, but it is not as awful as we imagine it in our own minds. Good luck to her!
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The lifemath site will give her stats if she doesn't have hormone therapy, but it doesn't cover not getting rads with a lumpectomy. I have read that local recurrence (i.e. cancer coming back in the breast) without lumpectomy is around 40%. That wasn't broken down by stage, but usually a lumpectomy would only apply to stage I or early stage II. Local recurrence with lumpectomy and rads is about 8%.
Lifemath calculates for mortality but it doesn't calculate recurrence. There is another site that her oncologist can use, adjuvantonline, that calculates for recurrence as well as mortality.
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I am not sure adjuvantonline does cover rads actually, as I have tried to look into that recently.
Did you find a specific part of the site which I didn't perhaps?
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Please remind her she has an invasive cancer. I do as well and would have done exactly what I am now, even if my cancer had been smaller. Best wishes to her, whatever she decides.
Linda
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Virginia, I'm sorry that I wasn't clear. Adjuvantonline and lifemath both look at the effect of chemotherapy and hormone therapy. Lifemath only gives survival numbers. Adjuvantonline will give both recurrence and survival. Neither addresses the differences between local therapies like type of surgery and rads. For lifemath, it probably doesn't make a difference anyway because from what I've read, lumpectomy with and without rads are about the same for survival and lifemath only gives survival numbers. For adjuvantonline, I don't recall if it explicitly says that it assumes that the local treatment is mastectomy or lumpectomy plus rads (both of which should be very similar for recurrence as well as survival), but the numbers it gives are consistant with that assumption. Lumpectomy without rads has much higher recurrence as you can see in what ivorymom posted.
The study ivorymom posted only looks at local recurrence. Tamoxifen is a systemic therapy that should be more effective against distant recurrence than rads and that might be a reason to get Tamoxifen if possible.
Age is a factor too because the younger you are the more time there is for a recurrence to happen. Since shelloz's friend would be getting Tamoxifen, I'm assuming she is in her early 50's or younger because that is only for pre-menopause.
An alternative to rads would be to get a mastectomy which has the same recurrence or a little better than lumpectomy plus rads.
For someone with other health concerns, it might make sense to do radiation therapy which is pretty short and usually pretty well tolerated and not do hormone therapy.
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I found it - here is Adjuvantonline's info on when their estimates apply and for lumpectomy, you have to be planning to have rads (7). They don't say anything about HER2 status on their list, but having compared their data to the MD Anderson study on women with tumors less than 1 cm, I'd also say that they don't do a good job for HER2+. They don't take HER2 status into account in their tool and they don't handle Herceptin chemos. I understand the latter because there aren't long term (10 year) results for Herceptin yet, but not the former:
Breast cancer outcome estimates made by Adjuvant! are for women who have the following characteristics:
1. Unilateral, unicentric, invasive adenocarcinoma.
2. Prior definitive primary breast surgery and axillary node staging.*
3. Not undergone pre-operative systemic therapy (usually referred to as neoadjuvant) or radiation therapy.
4. No evidence of metastatic or known residual disease.
5. No evidence of T4 features (extension to skin or chest wall).
6. No evidence of inflammatory breast cancer.
7. Plans to complete radiation therapy if the patient has had a lumpectomy.
For patients with special histological subtypes, for example, pure tubular, medullary, lobular, and mucinous histologies, the Help Files on Special Histologic Subtypes should be reviewed. Also, for patients with inflammatory breast cancer, the Help section on Special Histologic Subtypes should be consulted.
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Shelley - hard question. You've likely seen the study that Marie Kelley posted, about the possibility of Grade 1s ending treatment without even needing follow up.
My stats were a lot like your friends, so I definitely wasn't offered chemo, but everybody thought I should have rads. Susan Love quotes a study of Grade 1 who went without radiation, that was halted early, because the amount of recurrences was "unacceptable." My choice was to have short-term rads, which were over quickly, and has, so far, sterilized the field.
I do take tamoxifen even though I'm post-menopausal because I have osteoporosis, as I have no history of vein problems. My onc, however, has told me that it would be okay if I wanted to do no post-rads hormonals, because I had really excellent margins, no sign of anything except the one tumor, and almost no DCIS. I'm still a little too chicken.
I wish your friend a lot of luck. I know this is a hard decision.
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Thank you all for getting back to me, I appreciate all the answers. In my case, there were no choices, it was clear that I needed the whole shabang, but I understand how she is confused.
I have another question though. Bluedasher said that my friend probably was in her early 50's, since Tamoxifin is given to women who are not menopausal? I have 2 friends who both have just been diagnosed with breast cancer (the one I was refering to before included), both are in their late 50's and have been in menopause for a long time, both of their Oncologists have given them Tamoxifin, so I'm confused by this.
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shelloz1, women who are menopausal can take either tamoxifen or aromatase inhibitors; however, women who are pre-menopausal can't take aromatase inhibitors. Aromatase inhibitors are slightly more effective at preventing recurrances. For some people the side effects of armatase inhibitors are worse than the side effects of tamoxifen.
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ICanDoThis wrote: Susan Love quotes a study of Grade 1 who went without radiation, that was halted early, because the amount of recurrences was "unacceptable."
I've never heard of study halted early that was specifically done on grade 1's regarding lumpectomy without radiation. I recall something a while back that was halted early, but I really doubt it was soley a grade 1 study...but then again, my menopause brain may be acting up LOL. Even those I've seen that are directly trying to answer the question of whether or not there are some who can safely omit radiation after lumpectomy have included grade 2 in the mix. I don't have Love's book - could you take a look and see what study she is referring to?
SHELLY,
Your friend has excellent stats... very small tumor, grade 1, node negative, hormone receptor positive and her2 negative (BTW grade 1 is almost, if not always ER and PR positive and Her 2 negative) all add up to a very low rate of recurrence - especially if her surgeon was able to achieve wide, clear margins.
Specific recurrence stats from the large scale studies (those on which treatment standards are based) regarding grade 1 lumpectomy without radiation are difficult to pin down for a number of reasons but primarily, large studies always include the more aggressive grades 2 and/or 3 and so the overall results always reflect a recurrence rate that is much higher than if grade 1 had been analyzed separately. Whenever you hear or read a recurrence rate of up to 40% for lumpectomy without radiation you be certain, without even reading the results of the study, that the high rate is reflective of the inclusion of widely variable prognostic factors of those included in the study. In order to determine the recurrence rates for small, grade 1 BC after lumpectomy without radiation, the information has to pulled from within the larger body of the data. from these studies...and unfortunately, that information is not always published or even examined.
Here's an example of a small (there are others as well), single institution study done with the specific purpose of trying to identify those that can omit radiation after lumpectomy...and even this one, includes the higher grade 2's but at least offers the information necessary to separate grade 1's from the mix.
http://www.annalssurgicaloncology.org/cgi/reprint/11/3/316.pdf
You'll notice in reading this study, that they are able to identify certain prognostic factors ("ideal characteristics") which predict for low rate of recurrence (5-6%) after lumpectomy without radiation for short term follow up.
. These factors are; 1) older age >50 years
2) smaller size tumor 1.5 cm or less
3) lower grade - grade 1 or 2
4) adequate surgical margins 1 cm or greater
One of the most important things to understand about grade 1 breast cancer is that it is non-aggressive and only very rarely results in eventual death. Therefore a recurrence of grade 1, be it locally or otherwise, does not carry with it the same degree of life threatening consequences that grade 3 and some grade 2 breast cancers do. Grade 1 is a completely different, and much less threatening kind of breast cancer yet they generally treat it, in regards to radiation, just like the higher grades. In contrast to the higher grades, Grade 1 breast cancer is the least likely to reoccur and when it does, it doesn't usually present itself until at least 5 years have passed (and often much longer). So, it's not unusual at all for grade 1 breast cancer treated only surgically with lumpectomy and wide margins to NOT reoccur within the first 5-10 years. It can take a very long time for a sluggish little grade 1 to grow large enough to even be detected...and when/if that occurs, simply surgically removing it again is a reasonably option.
My own stats are similar to what you've posted about your friend (although you didn't mention her age or menopausal status) except that my tumor was nearly twice the size at about 1 cm. I was diagnosed a week or so after my 49th B-day but already in a natural menopause since the year prior. I refused EVERYTHING except the lumpectomy and it's now been 5 and a half years since my diagnosis in 2/2004 with no known recurrence thus far. Something to think about.
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I joined this forum a few weeks ago with the very same questions as your friend. Two days ago, I found and posted this:
This is the chart that "ivorymom" has shared w/link above from my thread. It took me 3 weeks to find it. It was from the National Surgical Adjuvant Breastand Bowel Project B-21 protocol clinical trial, numbering 1,009 patients, all with small sized invasive breast cancer. IBTR means same breast recurrence.
As far as recurrence for lumpectomy by itself, you often hear 35%-40% quoted by doctors, but "MarieKelly" has already mentioned that this is when all grades of cancer are combined in the various studies, and that good prognosis factors can reduce that percentage.
Hopefully your friend has asked for a copy of her final pathology report (from the surgery.) That will have the information concerning the surgical margins that she will also need to make an informed choice.
Navigate around this site. You will find lots of relevant information and first hand experiences on the Radiation Forum and the Hormonal Therapy Forum. Good Health to you both.
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