How to decide?

"If my cancer is now grade 1 (although technically it's gone since I had the lumpectomy), and I skipped the radiation and estrogen meds, and it came back, couldn't I opt to do more drastic treatments at that time instead?"

No, not really. In the sense that if it "comes back" that usually means stage IV, which is distant metastasis. You pretty much want to knock it out now when you have the chance.

However, you caught this really early, and it is a non-aggressive cancer (grade 1), so you have an excellent chance of eradicating it for good.

You should discuss all treatment options in detail with your oncologist.

It would definitely be a good idea for you to get back into exercising and dropping the extra weight.

Shira, I walked through all of my treatment. Often I couldn't do much, so I figured I might as well spend energy on something that would make me feel better, which it always did. When I ached or was tired, I walked more slowly, but I made sure to get outside every, single day, and there were many days when I had nice long walks with my dogs.

When I had my last surgery, on the tail end of my treatment, the cardiologist checked me extra carefully. Then he asked, mind you I was bony and bald, if I was able to walk a little. I told him that I averaged about an hour of walking a day, and the poor man almost started crying from joy, and expressed the fervent wish that all his patients would do the same.

If you live somewhere with really terrible weather, get a treadmill and walk in front of the TV. If your family starts whining, ignore them. Make it happen. You have to make your health a #1 priority, and getting moving is probably one of the best things you can do for yourself in that regard. Even a completely regular, mainstream onc will say the same.

Shira, once your final pathology report is back, you'll be referred to a medical oncologist (MO) who will order an oncotype test (assuming your insurance covers it).  This test will examine the genetic material in your personal tumor and will report your personal chance of recurrence.  Also, once you meet with your MO and your radiation oncologist (RO), you will have a much better idea of their roles in your care, and the impact of radiation.  I was also very iffy about rads, and, indeed, all my docs were very clear that I might or might not need that treatment, and it was entirely up to me (somehow, this is way more difficult that an absolute command).  When I met with the RO, however, she was very clear that the MO treats  cancer outside the original tumor, and the RO's job is to keep it from spreading outside the breast.  If there are any loose cancer cells in your breast, the rads will "get" them.  Eventually, I did decide to do rads.  It wasn't until the last week or so that I was glad I had done it.  Now I am very, very glad. 

The theory about vitamin supplements during radiation is that rads attack cells during division.  Healthy cells recuperate, but cancer cells die.  Vitamins A, C, D, and E (I think) support cell growth, so ixnay on that! 

Also, about the estrogen blockers:  Reading these discussion boards, I intuit that the docs seem to think that in lots of cases, this is more effective than chemo.  After all, if your tumor is estrogen sensitive, starving it seems like a pretty darned good idea. 

Leia, I don't know where you got your data about the reduction risk from hormone therapy.  The relative risk reduction for those who take Tamoxifen (or an AI) for 5 years is approx. 50% over those 5 years, with a lesser reduction (approx. 1/3) over the next 5 years (when the drug is no longer being taken).

"About half of the participants (10,645) had ER-positive breast cancer. Among these women, adjuvant tamoxifen reduced the number of recurrences by half in the first five years after treatment began and by one-third in the next five years. No additional reduction in risk of recurrence was seen in the subsequent 5 years, but the risk remained lower in patients who took tamoxifen than in patients who had not taken it 15 years after treatment began—that is, reduction in risk seen in the first 10 years did not “wear off" over time. Even women whose tumors expressed only a small amount of ER had a substantially reduced risk of recurrence after taking tamoxifen."

Most importantly for those who have invasive cancer (vs. those with DCIS), "(t)he decrease in recurrence risk for ER-positive breast cancer after tamoxifen treatment was accompanied by reductions in breast cancer deaths and in deaths overall. Throughout the 15 years since the beginning of treatment, the yearly rate of breast cancer deaths among patients with ER-positive breast cancer was about one-third lower among women who had received tamoxifen than among women who had not. Deaths from any cause were also substantially reduced in women who took tamoxifen."  This is because hormone therapy reduces the risk of both local (in the breast) recurrence, and distant recurrence (i.e. mets).

Long-Term Data from 20 Trials Confirm Tamoxifen’s Long-Lasting Benefit

Rads is different in that it is primarily used to address local (in the breast) recurrence, and to treat the nodes (for those who are node positive). The role of rads is to kill off any rogue cancer cells that might be left after the surgery is done. Although rads is a local treatment, because local recurrences and nodal involvement can lead to the development of mets, rads does reduce mortality rates:

"The analysis involved 10,801 women who participated in 17 trials of radiotherapy after breast-conserving surgery that have been carried out worldwide. These included trials of lumpectomy and of sector resection or quadrantectomy. Median follow-up was 9.5 years, and 25% of the patients were followed for more than 10 years.

The reduction in cancer recurrence became apparent in the first year after radiotherapy, and was sustained throughout the first decade. Ten years after a breast cancer diagnosis, 35% of the women who did not have radiotherapy had a recurrence, compared with only 19% of the women who had radiotherapy — an absolute risk reduction of 15.7%....

...The 15-year absolute risk reduction for breast cancer death was 3.8% with radiotherapy, which suggests that on average 1 breast cancer death is avoided for every 4 recurrences avoided by radiotherapy, the authors write. In addition, radiotherapy did not increase the 15-year risk for death from causes other than breast cancer."

Radiation After Breast-Conserving Surgery Cuts Recurrence

Shira, I'm not suggesting that this data means you should take hormone therapy and or rads; I just wanted to ensure that accurate information was provided to you as you make the decision.  What's important to understand is that Tamoxifen's 50% recurrence reduction over 5 years (and the 1/3 reduction over the next 5 years) is a relative risk reduction.  So how much benefit you would get depends entirely on what your recurrence risk is to begin with.  With a relatively small grade 1 cancer, your risk of local recurrence and your risk of mets might be low enough, without hormone therapy, that you are comfortable. Or then again, maybe not. Your oncologist should be able to give you an estimate of your risk.

As for whether hormone therapy would be of less benefit if you don't have rads, there certainly is a cumulative benefit to combining rads and hormone therapy, but if you choose to not do one, that doesn't mean that the other would not provide a signficant (relative) risk reduction.

Assuming that the source of the cancer was a cancer cell from the original diagnosis (i.e. it was a cancer cell not removed during the surgery and not subsequently killed off by rads or hormone therapy), then that would be a local recurrence.  So yes, you can have a recurrence that isn't mets, but is localized to the breast.

A cancer that is found in the same breast could also be a totally new cancer, unrelated to the original diagnosis, i.e. a new primary.  A new primary is more likely if the cancer is in a completely different area of the breast or if the cancer doesn't develop until years (15, 20 years) later. 

Generally it's assumed to be a local recurrence if the cancer is found in the same area and within the first 10 or so years after diagnosis although even then it's possible that it could be a new primary rather than a recurrence.

Sorry, longer answer than you needed! 

brookside - it is important to note that the recurrence risk number predicted by OncotypeDx assumes that you will take hormonal therapy, the report indicates how much potential chemotherapy will benefit when added to hormonal therapy.

Thanks Bessie! 

Shira, here is info on Thermography. It is not an accepted substitute for mammography.



http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm257499.htm

Shira said, "Leia, I have heard about Thermography, but where do you get it and about how much is it?"

A full body Thermography scan costs $400. A breast only scan is $250. Well, those have been my costs; I got the full body scan. Thermography is not covered by insurance. You have to pay it, yourself. 

I have a bunch of posts on Thermography, you can search for them on this board. 

As somebody said, on this thread, Thermography is not a replacement for mammography. That is true. But, it is the important first step in discovering a possible breast cancer. Or any other cancer.

Thermography can not diagnose breast cancer but it does predict it. Cancer is rapidly dividing cells. Too rapidly, abnormally rapidly. And this abnormal cell activity causes heat. And that is what the Thermogram detects; heat.Thermography is a picture, there is no radiation. It's a Thermo picture reflecting heat. 

So, if you have a Thermogram that show your breast as red, time to get a mammogram. To see what is causing that abnormal cellular activity. But if you have a Thermogram that shows as blue, meaning no abnormal celluar activity, there is zero probablilty there is any cancerous, abnormal cell growth. 

My thermograms since 2009 have all been blue. I am not saying all, there are exexptions on this board, but the majority of cancers take years and years to grow. And the Thermogram can predict that. And if the Thermogram flashes red, get the mammogram. 

The problem is that this blunt tool, the mammogram, has become the first line of defense. And as a result, many women are over diagnosed and over treated. To their own detriment. 

I have chosen to not do that. I have chosen the more sensitive tool, the Thermogram. That can not only detect Breast cancer but other cancers, as well. In my whole body Thermogram there were no other "red" spots, indicating cancerous activity. 

But in the end, everyone has to choose what is right for themselves. 

Shira, sorry for the delayed response. Even though my cancer did come back, I don't regret passing on tamoxifen. It was one of those gut things I just did not feel right about doing. Yes its hard because at EVERY appt for 5 years onc put the fear of God in me about it, but he's a good onc and respected my decisions and continued to do my tm every visit for 8 years thereafter. I do not think refusing the meds will cause cancer to be more aggresive if it comes back. In fact I think if anything, its the opposite. I remember reading something about people who got recurrence after tamoxifen sometimes had the cancer change to be reistant to hormone therapy. I think I responded so well to letrozole after the met dx because of being niave to hormone therapy. I did chemo and after 3 of the 8 treatments I practically had a nervous breakdown because I quit the chemo and the worried so much that I made the wrong decision, so I went back and finished the chemos. I never had any anxiety over not taking tamoxifen, so I knew that for me at the time I made the right choices. Looking back I do believe the hormone therapies are much more effective than chemo, and so much easier to take. Oncotype was brand new at the time and not being paid for by insurance yet. Of course there is no way to know for sure, but I think if my cancer was going to come back, it would come back with or without tamoxifen. Maybe it would have been delayed though, but I made it 8 years and my understanding is that is probably better than having it come back in the first 5 years.

Chinneymae, Tamoxifen came out first, and most of the Tamoxifen studies compared the results for those who took Tamoxifen to those who took a placebo.  Because Tamoxifen was proven to be effective, the subsequent clinical trials on the AIs were designed to compare the efficacy of the AIs to the efficacy of Tamoxifen - there was no placebo group.  I'm not sure if anything more current has come out, but in this report in 2009, it indicated that the AIs were found to be more effective than Tamoxifen. AIs vs Tamoxifen: Results of EBCTG Meta-Analyses

Something might exist somewhere, but I've never found a study that compares the AIs to a placebo.  But since the results for the AI are relative to the results for Tamoxifen, it probably would be fair to use the Tamoxifen studies as a proxy.  The Tamoxifen studies showed that recurrence risk could be reduced by approx. 45% by taking Tamoxifen for 5 years.  Tamoxifen for early breast cancer  (see as well the report about Tamoxifen that I linked in my earlier post). If the AIs are approx. 20% more effective, that would suggest approx. a 54% reduction in risk by taking an AI vs. doing nothing.

The numbers your oncologist quoted you seem to be understating the benefit of the AIs.  According to your doctor, without taking an AI, your recurrence risk would be 30%.  Taking an AI, your recurrence risk would be 20%.  That's a 33% reduction in risk, vs. the 42% - 47% reduction that the various Tamoxifen studies have shown and possibly an even greater reduction from the AIs. 

Edited to add:  Chinneymae, looking at your signature line, I notice that you had a MX.  That does change things, since it means that you have a very low local recurrence risk and mostly have to worry about distant recurrence. The recurrence risk reduction numbers for Tamoxifen and the AIs include both types of risk - local and distant. I also notice that you are HER2+.  Did you have chemo and Herceptin?  The question really is what your distant recurrence risk would be without taking the AI, and then how much that would be reduced if you took the AI.  From that standpoint, the 30% risk (without an AI) seems high to me.