IDC, family history, follow doctor advice or not?

etzbee

Hi everyone,

I was recently diagnosed at age 48 with IDC. I had a biopsy showing ER+/PR+/HER2- about 1cm tumor in left breast. I understand the ER+/PR+ may be "good" as far as you can say good with regard to breast cancer, in the sense hormone treatment can be used. Two surgeons I met with - one at my local community hospital, one a senior doc at Dana Farber in Boston - both recommend lumpectomy, due to the specifics of my tumor they say, and with the current studies showing that mastectomy doesn't provide longer survival rates.

I do have family history of breast cancer: mother-diagnosed around age 70, had triple-negative, but is doing well 10 years later; maternal aunt-diagnosed around late 50s age, passed 7 or so yrs later; and paternal grandmother-diagnosed young, around age 38, lived another 20 or so yrs til age 58 (which was in the mid 1960s).

I am awaiting BRCA testing for myself. No other family members were tested.

Assuming I test negative, I am confused between following the doctor's recommendation or being more aggressive. Probably one of the most difficult decisions for a lot of people. I know in today's current environment, that many people even without gene mutation but with family history are choosing to be aggressive with their surgical choice, and opting for mastectomy. I totally get that. Having family history makes you feel VERY vulnerable. Yet when doctors recommend lumpectomy, I want to believe them and the studies, that I can have about the same results regardless of surgical choice (going along with radiation and hormone therapy after lumpectomy).

I know nothing is guaranteed. No one choice can predict what will happen years from now. I know of someone who did do mastectomy, then had breast cancer return in the same breast, in her chest wall. I know that is probably rare, but not impossible.

As everyone here has probably gone thru, I am feeling the very heavy weight on my shoulders of making a choice that could have implications years from now. I don't want to live just 5 yrs or 10 years. I want to get beyond that. I have a 10-year old daughter and want to be here for her for a long time. That breaks my heart the most, thinking of her.

Do people feel the studies showing either surgical choice has about the same survival rate is applicable to people with family history, assuming no gene mutation? Its hard for me to get my head around that. And I know I could second guess my choice until the cows come home probably.

People say go with your gut, do what feels right for you. But I feel confused and unsure.

Thank you for any advice.

Obxflygirl1

so sorry you are in this position. Others will come along, I'm sure. Weekends are sometimes quiet on the boards. I also was offered lumpectomy vs MX. I choose the MX just because I am a worrier and did not want to dread another mammogram or wait for the other shoe to drop. It comes with a price. Not having any feeling across the chest, nipple reconstruction, tattoos. Its a journey but it was the best choice for me. I know it doesnt guarantee the outcome will be any different than a LX but it was the right choice for me.

hummingbirdlover

I'm so sorry you find yourself here but welcome! I can't offer a lot of advice to your situation because lx was not a choice for me, I had several small tumors that were spread apart so right breast had to go. I opted for BMX though because I had very dense breast tissue and couldn't bear the thought of worrying about the left side. I don't regret my choice at all but that being said, one of my friends had lx over five years ago along with radiation and she is doing great. It's a very personal choice and you have to follow your gut and do what's best for you and then try very hard to not second guess your decision. I wish you all the best! I have a 10 year old son and I know how you feel about being around for them. Take care

sandilee

Hi etzbee,

I do think that the studies have shown no advantage for those who have a lumpectomy vs a mastectomy. My onc, even back in 2007 was saying that. I wanted to be more aggressive, thinking that with a mastectomy, my chances of a recurrence were less. ( big mistake - thinking I, a newbie to cancer, knew more than my highly regarded oncologist with 30 years treating patients.)

Well, I did have a recurrence in my bones, so it didn't help me. Now, I wish I had my right breast. Even though I'm stage IV, I'd like to have the chance to re-do that decision.

Our surgeons are now able to remove the cancerous tumor without taking all of the breast. This is a wonderful thing! I believe that most of us who have a recurrence in less than five years have had tumor cells circulating in the blood, looking for a home when our cancer was found.Taking off the breast where the tumor originated does diddily squat in preventing that.

Removing the breast will prevent a recurrence in the same breast, but that's not that common if one has radiation, and a local recurrence isn't really the problem, anyway. Mets are the problem, and studies have shown, as your doc says, mastectomy does not decrease your chances of a distant recurrence.

You are very scared, now. I remember that feeling well, but my suggestion is to listen to your surgeons. It sounds like they have the latest information.

Moderators

Hi Etzbee-

We want to welcome you to our community here at BCO. We're so sorry you find yourself here, but you've come to the right place for support. As you can see from the responses you've gotten already, you are not alone!

The Mods

snowmagick

etzbee I'm in the exact same boat with you.... have to make the exact same decision here shortly. At first (last week) when I talked to the surgeon, I thought "heck no, I'm going for the mastectomy!" I thought the lumpectomy was just not going to give me a better chance... and radiation sounded just... so.... **shudder**.

But then I started doing more reading and research. I'm now leaning towards the lumpectomy and sucking it up for the radiation.

Wishing you strength as you begin this battle and best wishes for your journey!

~Snowy

etnasgrl

I am 41 with IDC, (1cm), in the right breast. My mother was diagnosed with breast cancer at 42 and passed away from it at 56. Genetic testing came back negative.

I elected to have a lumpectomy followed by radiation, as opposed to a mastectomy. I had several reasons.
1) I wanted to keep my breasts and feeling in them, if at all possible.
2) I did not want to put my body through a very long surgery and recovery.
3) After doing much research, I learned that breast cancer can still come back, even after a mastectomy.

I figured that if the cancer is going to come back, it's going to come back, regardless of the surgery I choose. I will follow the treatment plan laid out for me and take any medications my oncologist gives me. I have also changed my diet and exercise habits. In other words, I am doing everything in my power to prevent a recurrence.
If down the road, the cancer returns, I will know that I did everything I could to prevent it, but it wasn't meant to be. If I need a mastectomy then, I will go ahead with it.

fralaliso

Hi Etzbee,

I was faced with this same decision exactly one year ago. I was diagnosed with IDC 2.9cm in my right breast. Surgeon recommended lumpectomy, but I opted for BMX. I had extremely dense breast tissue. Even with a marker in place showing my tumor, it still wasn't detectable on mammogram. Also, I diligently went for yearly mammos and got the "all clear" each time. However, my BS told me based on the size and pathology of my tumor, it likely has been growing for 8 - 10 years!! My concern was that I had absolutely no confidence that a tumor in my left breast would be detected during screening and I knew it would constantly be hanging over my head. So, I opted for BMX and I'm glad I did. Post surgery pathology showed a second primary tumor in my left breast. Who knows how long it would have gone undetected.

Again, BMX was the right decision for me, but every one is different. You need to figure out what is right for you. Good luck with your decision.

LisaAlissa

Hi Etzbee!

There are so many things to consider when you're making your decision. "Here" is a post from one of our most articulate members (Beesie) about things you might want to consider when making such a decision. Many people have found it very helpful...and you might too!

Increasingly, your medical oncologist (MO) might want to talk to you about neo-adjuvent (before surgery) therapies. I have no idea if anything of the sort would be suggested for you. But making an appointment to interview one or more MOs before surgery might not be a bad idea, so if they want to suggest such a thing they can...

The thing to remember is that your docs wouldn't be offering you a choice of "this or that" if there were a truly "wrong" decision between the ones they have described to you. Each choice has different ramifications. And it's up to you to sort out what you will be able to best live with. We'll be glad to help you, but the decision really has to be yours.

HTH (and please come back and talk with us),

LisaAlissa

ruthbru

This is the very latest research, released December 10th from the 2015 National San Antonio Breast Cancer Symposium, which is the annual meeting of the leading oncologists and breast cancer researchers:

Lumpectomy Plus Radiation May Offer Survival Benefits for Early-Stage Disease

Many studies done in the 1970s showed that lumpectomy plus radiation to treat women diagnosed with early-stage breast cancer offered the same survival rates as mastectomy. Based on these studies, the U.S. National Institutes of Health released a statement in 1990 saying that lumpectomy plus radiation was preferred over mastectomy to treat early-stage breast cancer.

Over the last several years, some studies suggested that lumpectomy plus radiation offered better survival than mastectomy for women diagnosed with early-stage breast cancer, but the follow-up time for these studies was only 5 years.

A Dutch study with 10 years of follow-up also suggests that lumpectomy plus radiation may offer survival benefits for some women diagnosed with early-stage disease.

The study, "Higher 10-year overall survival after breast conserving therapy compared to mastectomy in early-stage breast cancer: A population-based study with 37,207 patients," (Abstract S3-05) was presented on Dec. 10, 2015 at the 2015 San Antonio Breast Cancer Symposium.

The researchers looked at the records of 37,207 women who were diagnosed with early-stage breast cancer in the Netherlands between 2000 and 2004:

• 21,734 women (58.4%) had lumpectomy plus radiation
• 15,473 women (41.6%) had mastectomy

In this study, only the women who had lumpectomy had radiation. In some cases, radiation may be given after mastectomy, especially if the tissue removed during mastectomy doesn't have clear margins or if the cancer is more than one spot in the breast.

Overall, the women who had lumpectomy were younger and had more favorable cancer characteristics. Both of these factors would make it more likely that these women would have better survival compared to older women who had less favorable cancer characteristics.

After 10 years, overall survival rates were:

• 76.8% for women who had lumpectomy plus radiation
• 59.7% for women who had mastectomy

Overall survival is how long the women lived, whether or not the cancer came back.

The researchers did a second analysis that accounted for differences in factors that might affect overall survival, such as:

• a woman's age
• whether or not a woman was treated with hormonal or targeted therapy after surgery
• the grade of the cancer

The adjusted analysis also found that women who had lumpectomy plus radiation had higher overall survival rates.

The researchers found that disease-free survival was similar between the two groups. Disease-free survival is how long the women lived without the cancer coming back.

The researchers suspect that the radiation was the reason for the difference in overall survival.

"We think that radiation therapy may have played an important role in the difference in the outcomes from both treatments, although we cannot prove it with our data," said Sabina Siesling, Ph.D., senior researcher at the Netherlands Comprehensive Cancer Organisation.

Livre

without a breast cancer gene mutation, mastectomy is not recommended . I understand you have a family history positive for cancer and there might be genetic variants that we might not identify as yet. So I would say " go with what you are comfortable with" if you have negative genetic mutation.

maxdog

I personally knew a BMX was the right decision for me. I wrote about it on my blog-link should be in my signature. My cancer was found during a screening mammogram prior to reduction surgery. To me, a lumpectomy would be much more disfiguring than a mastectomy....in my own head. Also, I don't want to look back and think, oh I should have had a mastectomy when I had the chance. No regrets here.

mustlovepoodles

I hope you're being tested for gene mutations other than the BRCA genes! My family tree is rife with cancer on both sides, including several breast cancers two of which were at 47 and 24~! Thankfully I opted for the 32-gene panel. When the BRCA genes came back negative we rejoiced. I went forward with the lumpectomy. Then 2 weeks later the other shoe dropped--I'm positive for two rather rare gene mutations, PALB2 and Chek2. My genetics counselor put my BC risk over 45%. Holy Moses!

My MO has strongly recommended that I have a BMX--as she put it, "Your breasts are going to try to kill you!" That's set for sometime late Jan-early Feb. She also wants me to have my ovaries removed some time this year, probably summer.

Without the gene mutations, I would probably have just needed some chemo and radiation. But the gene mutations changed everything.

jlstacey

I think it really is a personal decision. I ruled out lumpectomy from the start due to the size of the tumor in relation to the size of my breast. What I struggled with was mastectomy or bilateral mastectomy. I really leaned toward BMX but wasn't sure whether it was worth it to take both breasts. I had heard of too many women having a new primary cancer appear in the other breast after a unilateral mx. My oncologist said to me, will you wake up thinking about it everyday? If you will worry about it, I think you have your answer. If you know you won't think about it and worry if it will come back, then go with the MX. I ended up doing the BMX and have never regretted it.

So, if you think you will wake up worrying every day after having a lumpectomy, then strongly consider a MX or BMX. I was never really that attached to my small breasts, so it wasn't hard for me. I have a friend, however, who has had breast cancer three times and has no family history who has had a lumpectomy for each.

You will lose sensation in your nipples (if you retain them) and your breasts if you do a mastectomy, and for some women that is a huge deal. So, that is something to consider as well. I still have some sensation but not much. Oddly, my lights still go on, and I didn't think that was supposed to happen anymore!

Noni

I opted for BMX when only 1 breast had cancer. I feared the constant worry and knew that removing them both word make me feel more at ease.

Eight years later the cancer is back and has spread. As much as that sucks I don't regret my decision. My daughter was 3 when I was diagnosed. In my mind I thought the surgery would be easier on her, rather than having 6 months of treatment that would make me sick and take me away from her on a regular basis.

I am now 48 and my daughter is 10. She came to chemo with me this morning and we made it fun. I hate that I have to do this but I am glad that's she's older and can understand better.

Best of luck to you in your decision.

jlstacey

I think it really is a personal decision. I ruled out lumpectomy from the start due to the size of the tumor in relation to the size of my breast. What I struggled with was mastectomy or bilateral mastectomy. I really leaned toward BMX but wasn't sure whether it was worth it to take both breasts. I had heard of too many women having a new primary cancer appear in the other breast after a unilateral mx. My oncologist said to me, will you wake up thinking about it everyday? If you will worry about it, I think you have your answer. If you know you won't think about it and worry if it will come back, then go with the MX. I ended up doing the BMX and have never regretted it.

So, if you think you will wake up worrying every day after having a lumpectomy, then strongly consider a MX or BMX. I was never really that attached to my small breasts, so it wasn't hard for me. I have a friend, however, who has had breast cancer three times and has no family history who has had a lumpectomy for each.

You will lose sensation in your nipples (if you retain them) and your breasts if you do a mastectomy, and for some women that is a huge deal. So, that is something to consider as well. I still have some sensation but not much. Oddly, my lights still go on, and I didn't think that was supposed to happen anymore!

etzbee

Thank you everyone so much for your replies and valuable information.

I did have a lumpectomy this past Monday (Jan 11, 2016) but the debate still bounces around in the back of my head. My follow-up appointment with my surgeon is today, followed by an appointment with the oncologist. I will ask them again about my risk level. My concern is that without being BRCA gene positive, the family risk doesn't almost seem to get factored in. And since my mother was older at diagnosis (70) that doesn't really get factored in either. Families are smaller these days than in the old days. So its not like there is a lot of first-degree, or maybe even second-degree, family members to be able to judge.

I did do the multi-gene panel, but those results aren't back yet. They should be within a week or so. The nurse did mention to wait on those before starting radiation, as if those do indicate a raised risk, then perhaps mastectomy would be discussed. Interesting, because when I initially met with the genetic counselor, she was of the opinion that surgical decisions would not be made based on those other (non BRCA) genes. Just a matter of opinion I guess

My lumpectomy pathology showed negative nodes (0/3), and the other characteristics of the tumor remained unchanged from what the biopsy showed. So I believe the suggestion today will be radiation and hormone meds. Radiation would help the single breast. Hormone meds if there are other hormone-positive cells/tumors lurking about.

I do tend to be a worrier, so it makes me wonder, am I going to be constantly worried about the other (right) breast? Just waiting for something to get found there? And if so, when? Would another type of tumor - hormone-negative - pop up, that the meds won't be of any help for?

And would I be worried after mastectomy anyway... just about something different, like the chest wall or spreading to other organs. There is enough to worry about that maybe my surgical choice would not reduce my worry significantly.

I also have dense tissue. Another factor. So then I don't feel that trusting of the mammography screening. If something does come up in my other breast, is it going to get found early? I will ask, at my appointment today, about what additional screening might offer.

I wish I felt like others, who just knew "this the right decision for me". It all feels so new and raw.

Thank you for listening!

ruthbru

Ask about 3-D mammograms. They are very effective. I think that no matter what you do, you will worry a lot at first. After you are done with treatment and you get to go back to a more normal life, with all the busyness, distractions, and hopefully some fun stuff too.....only then does the worry recede. You will be shocked the first time you realize that you haven't thought about cancer all day!

Great news on the negative nodes!!!! That should diminish the worry factor a little anyway.