This article about mastectomy vs lumpectomy is confusing me

Betty, your link isn't working.  Is this the article you meant? 

http://www.health.harvard.edu/blog/for-early-breast-cancer-lumpectomy-is-at-least-as-good-as-mastectomy-201301295838

Hey bettylovestrees! Nice to see you! I hope you had a nice Christmas and New Year!

I am sorry that you are feeling conflicted, but I totally understand what your concerns were at the time, and they were all valid reasons for you not to have the Lumpectomy and the Rads. You didn't make that decision lightly, so please don't beat yourself up over this random article.

I had the same choices to make, and also went with the Umx because I didn't want to have Rads if I could avoid them. I also had that fear of having a lumpectomy that could discover more problems and possibly more surgeries to get clear margins. I found all those concerns were more distressing than the thought of a Mx. Add to the mix, that I would have to travel about 2.5 hours to the town where the Radiotherapy clinic is situated, that made it a no brainer for me. If it is of any help to you, I have read lots of articles too, but fortunately I haven't wavered in my thinking and would still do exactly the same thing again.

I am so sorry you are feeling depressed, I hope you can find your way out of it, and find peace with your decision. Hugs to you..

Very well said, Beesie.

I know here in US reconstruction/lift for the non involved breast is considered insurance approvable, under the law. I had my non cancer left side lifted and refashioned when I had my lx on the right. Maybe you would consider getting the remaining one redone with the oncoplasty, if you are able in your country and be insurance covered? Might make you feel better about things to be somewhat more evenly matched.

Hello, I'm very sorry you are going thru this.  This is the first time I've shared some of my story. Breast cancer does not run in my family. At the age of 39 I had my first mammogram. Long story short I was originally told I had stage 3b in my right breast. After countless core needle biopsy, spot compressions, 2 lumpectomies etc. I was told I didn't have cancer. Great news for 6 months anyway. This went on for a year and a half. After another mammogram and the countless spot compressions etc. 2 more lumpectomies and a partial mastectomy I was told my dcis was so wide spread they could not get clear margins. The dcis was only in my right breast but the stress was just too much for me to go through it again if it was to show up on my left breast so I had a double mastectomy.  What I found to be the hardest thing to go through was the lack of support because stage 0 isn't considered cancer with most people. So I had to deal with lack of support from some people  that I thought were my true friends. Don't get me wrong I did have  good friends who were very supportive but the general lack of knowledge of dcis is unreal. However, I wouldn't know about it if I hadn't gone through itself.  I can go on with the poor me saga but I never wanted to be a victim.  It is a hard road but you do get through it. I'm just under 3 years cancer free.  If anyone wants to talk or share I'm here. I'm hoping this helps me too. It's one thing to have a support system when who your sharing with doesn't really know what your going through as to one who does understand. I hope this helps someone. 

I respectfully disagree with the assessment of this article (From Harvard using a CA registry study not wikipedia) and how you are interpreting the "grain of salt".  

The author clearly says this was not a randomized control study- they did not randomly assign patients to the mastectomy or the lumpectomy group- had they done so it would have been more "scientific" but that type of human subject research is not prevalent today for many ethical and medico-legal reasons. The groups were the result of individual choice of patients/physicians.

It is possible that all the health issues they describe with the mastectomy sentence could also be true of the lumpectomy group- this article is not some kind of inflammatory thing unless we make it so-  its simply a review of a study over time (important) looking at a bunch of people with breast cancer, how they were treated and the outcomes. 

As someone who had a lumpectomy the comment that lumpectomy is "at least as good" as mastectomy was reassuring- some might take issue with that and worry maybe mastectomy was better- everyone has a different interpretation none are right or wrong.

You don't have to read what you don't want to read- turn the proverbial page but lets not ban the article please.  others prefer to have information and knowledge and the "confusion and doubt" is alleviated for some by reading the research. 

I think there are some questions about the study, but it's impossible to know whether those unknowns would change the results or not.  What we do know is that there have been many studies in the past that have shown that the long-term survival rate for those with early stage breast cancer is the same whether one has a lumpectomy or a mastectomy.  The only difference with this study is that it suggests that there possibly is a slight edge leaning towards the lumpectomy side.  Over time we will see if that result is supported by other studies but in the meantime, this study certainly confirms all the previous studies that showed that there is at least no difference in the survival rates.

Jill: every state has a cancer registry (as well as many counties and most other countries) and the info is used to compile statistics for SEER, watch for possible environmental contributions, identify populations without proper access to treatment, notice trends in certain populations who are diagnosed, etc. The registries don't care about individuals so much as gather the info we all need to learn more about this disease. Because cancer is considered a public health issue, a great deal of doctors or a patient's insurance company will report a diagnosis. Here's a link to the site: http://www.ccrcal.org

Cancer is a public health issue and health care facilities are legally required to report all cases to their state registry.  Access to the data is tightly controlled under state law. For research studies researchers usually do not have access to patient identifying information unless they are registry employees or have executed very tight legal agreements. 

Although randomized controlled trials are the best way to determine which treatment has the best outcomes in a specifically defined set of patients, registries with all cases are the best way to determine what happens to patients treated in regular practice in all facilities and to measure incidence and overall survival. 

For DCIS research studies do not have survival as the primary endpoint because survival is so high and numerous studies indicate that MX vs. lumpectomy + radiation therapy have no difference in survival. There is no basis for calculating the huge sample size that would be required for a study to have any expectation of detecting a difference in survival. That is good news! With either treatment the probability of not dying of breast cancer is very high. Even with a recurrence the outlook is still excellent if caught at an early stage.  Once treatment is completed the best approach is to look forward, not revisit the treatment decisions, and get regular follow-up so that if a recurrence does happen it will be found early.

Hi Coffee Latte, the recurrence rate after mastectomy for DCIS is still 1 to 2 percent, despite what you read on the threads here.  Because 1 to 2 percent of individuals can get a recurrence, those are the individuals who find themselves coming to to bco.org to post their (rare) situation.  The recurrence rate is somewhat higher after lumpectomy (and by reading threads here we would think we will all get recurrence), but again, the majority of patients with lumpectomy for DCIS go on to live their lives without recurrence.  Some do get a new primary bc in the other breast, but even that situation is not so common.  So, there is clearly a small chance that you could get a recurrence, but you probably have other health risks, which you may not even know about, with higher chances of occurrence.  Unless one is BRCA positive (where the recurrence risk post mastectomy is somewhat higher), the risk remains very low.  If you can, try to avoid going to those threads.  It took me awhile to do that, but I am really now just restricting myself to DCIS and high risk threads, with very occasional detours. Because I'm not taking hormonals and because I didn't do bmx or even mx, when I see my physicians, I am treated as high-risk, but I just remind myself that I am going to a major breast cancer center, where the physicians also see those individuals who do have recurrence, so the physicians minds are a bit skewed towards recurrence risk, as well. 

Thank you so much for the help ballet12 and ziggypop.  I was not keeping things in perspective at all.  I read that thread like it was a novel I could not put down because I wanted there to be a surprise happy ending or some satisfying resolution. I really got myself caught up in it and as more and more women posted I thought why did I even bother to have treatment, there is no stopping this stuff. It seemed like the recurrence rate was really 30-40% instead of the 1-2%.  I am taking your advice to limit my reading to the DCIS section for a while.  I need more time to get my confidence back.  I am embarrassed to say this but I had to have an upper endoscopy on December 27 because I had developed terrible burning and acid in the stomach since the surgery that I thought I had an ulcer. I turns out that I don't but I do have a bad case of gastritis from major surgery and from the worry.  I was put on an acid reducer for the next few months and I do feel better.  I was a lot more worried about breast cancer than I thought. 

I just read the post from ziggypop again and now I understand the 'self selecting' concept better. I did not realized you could pull up posts from this website by typing in a search in Google.  I just tried it and it does exactly like ziggypop said. Thank you so much.

coffeelatte (nice handle BTW) - there's no reason to be embarrassed. I was reading the other day that a good amount of women (about 30%) actually experience PTSD in the first month of being diagnosed. It's great that you are able to step back and put it back into perspective. I still have to do that and I'm a year and a half out from my diagnosis and I'm a really laid back person in general. 

If nothing else when we get diagnosed with something that's potentially lethal- whether it breast cancer or something else, we realize that we're not immune to being hit with big scary things and that's something we all have to sort through. You'll do fine with that because you're already dealing with it. ((hugs)) 

Coffeelatte, I'm late to the discussion but I'm very familiar with the thread that you mentioned. If you read that thread, it sure looks like lots of women who have BMXs for DCIS end up having recurrences.  But consider this:  

- Approx. 60,000 women are diagnosed with DCIS every year in the U.S. alone (and this board includes more than just Americans).   

- Of those 60,000, approx. 30% have mastectomies, so that's 18,000 women a year in the U.S. who have a MX for DCIS.  Of those women, just under 1/2 have a BMX - so let's say it's 8,000.

- If 1% - 2% of the women who have BMXs for DCIS have a recurrence or develop a new primary, that's 80 - 160 women for each year of DCIS diagnoses. 

- On this board, we have women who were just diagnosed and we have women who were diagnosed 10 years ago or more.  Over the past 10 years, ~80,000 women in the U.S. have had a BMX after a diagnosis of DCIS; 800  to 1,600 of these women will find themselves with a recurrence or new primary.  I believe that breastcancer. org is the largest / most popular breast cancer discussion board out there.  So it is any surprise that we might find on this board 5 or 10 or even 20 women who've had BMXs for DCIS and who've had a recurrence?  But it's still just 1% - 2%.  Not worth living your life in fear about. 

One other thing.  You can't always believe what you read.  Some women who say that they had a diagnosis of DCIS and then developed an invasive recurrence (and particularly, a distant recurrence, i.e. Stage IV mets) also happen to mention that they had chemo or Herceptin at the time of their initial diagnosis, so it's pretty clear that they didn't have pure DCIS but must have had a combination of DCIS and IDC.  In other cases, someone might say that she had DCIS but mentions as well that she was Stage II, for example, so here again it's apparent that the diagnosis wasn't pure DCIS.  I find that in many (if not most) of the cases where we see a diagnosis of DCIS turning into a Stage IV recurrence, that's what's actually happened.