Lumpectomy with no further treatment

Hi Bonnie -

I didn't do anything other than a lumpectomy - not even tamoxifen or arimidex and also had no post lumpectomy radiation. I refused it all.  All I had was a wide margin lumpectomy and biopsy track removal. However, my small tumor wasn't just DCIS - it was composed of 60% invasive ductal (IDC) and the remainding 40% was DCIS, so my refusal was for a stage 1 invasive tumor. It was also just an indolent little grade 1 which measured just slightly under 1 cm in size.

I'm very comfortably having done nothing but yearly mammograms since my diagnosis 6 years ago this month. I haven't even seen an oncologist since shortly after my lumpectomy in 2004. The main reason why I'm comfortable having done nothing other than the lumpectomy and track removal is because the tumor was small and low grade, the margins were very wide and I was already in menopause.

Another reason why I'm comfortable with just yearly mammograms is that I've been in menopause for nearly 7 years now (since age 48), so I'm already naturally estrogen depleted and I have extremely non-dense breast tissue, more so since menopause but always have had what I call "old lady boobs" even when I was much younger. So in having such non-dense breast tissue, mammograms work very well for me and can easily pick up anything relatively soon after it gets started. My 1 cm tumor would never even have gotten the chance to to get anywhere near that size it did if I hadn't been foolish enough to skip mammogram for the 7-8 years prior to the one that picked up the tumor. 

In mid March it will be year 6 since my lumpectomy, so another yearly mammogram is coming up soon. I haven't really worried about local recurrence these last 5 years although now that year 6 is here, I think about it ever once in a while. Grade 1 tumors, since they're growing so slowly, have more risk of recurrence AFTER the 1st 5 years although the risk is still significantly lower than higher grade tumors of the same size. I also don't give much though to distant metastatic disease either since small, grade 1 breast tumors only rarely become distantly metastatic. Of course, anything is possible and it does cross my mind on occassion whenever I get an ache or pain somewhere (which of course, is rather frequent since menopause!!). All my options are still open if I get diagnosed again, so I just continue on as if it never happend - except for making sure I get those yearly mammograms, of course!

Hi Bonnie, 

It will be 7 years ago in May/June when I was diagnosed with DCIS and had lumpectomy only, no rads, no tamoxifen. So far I am doing okay, I've had a couple of biopsies since then but all was okay, no further cancer was found. When I was first diagnosed I was on this website every single day.  I never, ever thought the day would come when I didn't think about bc and my "impending death" every minute of the day.  Especially since I was taking such a radical approach by not having radiation.  I'll never forget the first time I went more than a minute thinking about bc.  It was about 10 months after I was diagnosed and I was at a holdiay party having a great time.  All of the sudden I realized, "MY GOSH!!! I haven't thought about bc for the last 20 minutes."  Now, 7 years later I only come on here every few months to see if there is anyone else going this route.  And while I do think about it at some point everyday it isn't constant and it isn't with the horrid dread I used to have.  I still do fear finding that it has metastasized because of one stray cell they missed and all the aches and pains in my body worry me.  And the last couple of weeks I've had an uncomfortable feeling in my chest that worries me.  I was diagnosed with a vestibular disorder a couple years ago and that has more or less trumped my bc diagnosis for the time being.  Now I spend all my time on Meniere's websites .

 As far as the follow up I am getting - at the start of this I was sent to an oncologist who told me I was the only patient he had that he could recommend "lumpectomy only."  That told me he had no experience at all with someone like me.  I'm a hypochondriac and therefore a high-maintenance patient when it comes to something like cancer.  I asked about getting an MRI and was told insurance would never pay for that.  All in all, dealing with him was a bad experience.  I spent the next 10 months fighting a severe depression while trying to find a doctor who could help me.  Finally I found a great doctor and things got better, much better.  With her I alternate MRI's (no insurance problems yet) with mammos and have office visits every six months.  This may be overkill at 7 years but it makes me feel better.  On a sad note, she was scheduled to retire last fall but had to leave a couple months early as she was diagnosed with bc.

It is a rough road to follow, no way to deny that.  Seven years ago it seems there was barely anyone here who had no rads, no tamox, we (DCIS) didn't even have our own forum.  Now I find there are more and more women who go this route.  Every time I come on I say I am going to go through and make a list of these women so we can keep in touch in the future as many, many leave the site after a few months.  I work with a woman who had DCIS about 20 years ago, no rads or tamox and she is fine today, no problems, she gets a mammongram once a year, never had an MRI.

Do you know what your VNPI is? Mine was 4/9 on the old scale and 6/12 on the later one (with ages added).  Read up on this and read anything you can by Melvin Silverstein or Michael Lagios.  A book I found very helpful is "Assess Your True Risk of Breast Cancer" by Patricia Kelly. And finally, I have to say one of the most important things is have a doctor you like and who will answer your questions and explain everything to you.

Such a timely question for me.  I am thinking that I just want to go with the lumpectomy and tamox and no rads.  I had my lumpectomy last Monday and will be in tomorrow for Lumpectomy 2.0.  In general, what they found was good--all but one margin was not just good but excellent with the area of DCIS less than 1 cm [.7 to be precise].  I have talked to my surgeon already and she indicated that it might be a possible and not some thing that would unduly risk my health.

I find myself feeling that using rads on my amount of DCIS is really using an elephant gun on a mosquito. I don't know about other people but I had more than my share of radiation doses already in connection with chest xrays in the 60s [had pneumonia as a child], both my father and paternal grandfather died very young with possible heart issues, my mother currently is in heart failure, etc.  I feel like radiation in my particular case would mean burning a lot of bridges that I'm not prepared to burn.  As I understand it, radiation is a one time thing--do it for DCIS and if I get another type of cancer, its a no go leaving me with a mastectomy and mega resconstruction.  Hmmm, I don't think I like those options.

Thanks to all for posting on this thread.  Sometimes I have been feeling so alone with my decision and yet, I think it is right for me.  But then we see how things go tomorrow, right?

I am so happy to find this discussion. Just recently diagnosed w/"invasive" DCIS, which still doesn't make sense to me; I thought that was a contradiction in terms, Stage 1, 2 cm, estrogen-receptive tumor (still don't know all the jargon). 47-yr old female healthy, slim, active, non-smoker, still menstruating, w/no bc risk factors. Although oncologist "excited" I am an "excellent candidate" for tamoxifen, I am NOT excited. I am strongly considering lumpectomy plus radiation but nothing further. Have never had any radiation before. The tamoxifen side effects scare me. Also I have never taken any prescription medications AT ALL and do not like the idea of getting in the vicious cycle of taking more meds to counter act side effects etc etc. Very reasssuring to read of other women who make similar decisions; any advice greatly appreciated.

I had posted earlier in February and have now had my third Breast MRI (a year since my last one in Feb '09).  Again, I was given a Benign/Negative findings report on the MRI.  It was rated BIRADS 2 (I don't think I'll ever be lower than a BIRADS 2 with my history at this point!).  Again, I am not really all that far out from original diagnosis as it will just be two years this coming July, but the 'close monitoring' on my part, so far, has indicated nothing additional amiss.  Keep fingers crossed it continues.

Yes, I had lumpectomy with no further treatment recommended. Mentally I have to say, I am a bit weird about it!!! I have even found myself thinking I would rather have been told I needed more as I would feel that everything had been thrown at it! It is so hard to accept the opinions of all the medics involved that I only need careful surveillance and yearly mammos, and I know in the sensible part of my head(!) that I should be thanking all my lucky stars and getting on with my life. Lots of other women are not so fortunate and all treatments have some sort of side-effects.

Please think long and hard about passing up on the radiation, my surgeon wouldn't sign off on my choosing lumpectomy over mastectomy unless I agreed to also have rads (and this was when my diagnosis was just pure DCIS, not when later we learned I had a micro-invasive 1.7 mm too). My surgeon is very conservative and goes for nice wide margins. But it is risky ending it there, as DCIS is a sneaky thing, and I fear that if I needed another lumpectomy down the road, I'd lose the breast to a mastectomy and then have no sensation. Maybe if ones total DCIS is teeny, like < 1 square cm and it's grade 1, it is worth a discussion,  but mine was grade 2 and several square cms.

 Was just talking about this with another breast dr. who said that the reoccurence rate goes down a lot due to radiation treatment -- much more than hormone treatment. Someone wrote that it cuts it in half, don't know if it's that high, but recall onc. telling me that tamoxifen would lower my chances some teeny amount , like from 3% to 1.5% or something.

Like previous posters, I, too, have never taken other medications -- healthy and happy and only in my 40s. I am going to pass on the hormone treatment, content with that decision and will enter menopause naturally, hopefully.

Have had 20 rad. treatments (just 10 more to go) and it's a good "life insurance policy."

Good luck with your decision-making. Being stage 0 or 1a (in my case), it is nice to have options/decisions.

Radiation scares me. They say that mammo's causes cancer...if so, then how much more radiating the breast after the cancer is removed. I've read testimonies of women who had radiation therapy and a year or so later had a invasive recurrence. How did that happen? It may kill, but for the one cell it doesn't kill ... can the radiation feed the cancer? I don't understand the concept fighting fire with fire. If it made more sense I would have had no problem with getting rad's.

From what you quoted her risk of more cancer is practically 100% because she has a positive margin and that means the cancer was not all excised.  There is almost certainly more cancer beyond that margin (unless she is extremely lucky!).  The 0.2 mm is also very small and may well mean more cancer beyond that.  It is not only a question of more DCIS.  Tumor not yet excised could include an invasive component. 

She needs further excision -- either a mastectomy or a re-excision.

Redsox and Beesie : Thank you for the replies. My mother is in surgery right now ( rt. breast mastectomy and TE ). I am told that this combined procedure will take about 3 1/2 hours ! I won't hear anything till late tonight.

Because there very well could be cancer cells left in the breast.  Radiation cleans them up.  THere is no tests to make sure that all the cancer cells were taken out.  Some of them could have strayed if she had a biopsy done---called a "needle track".  It concerns me though that one doctor said ADH and the other DCIS....  get a third opinion?   Tami

Hi Ellenida, So you only had the Lumpectomy and no radiation after surgery. Did doctors support your decsion. I am thinking to refuse radiation for my mom, But scred from chances of reoccurance.

Redox, I am reading a lot on these threads about the radiation. My mother has not done to much research about it and my mom is not very strong person.If I explain her all the side effects of radiation now, and after Lumpectomy and pathologist report, if we have no choice other then radiation then it will be hard for us to satisfy her . That is why I am worried about radiation for my mother and in the above message May be i write it down wrong. Actually i want to explain what my opinion is for side effects of radiation. But the final decision will be my mom's decision.

Thanks Bessie,

So after Lumpectomy they will let us know if my mother needs radiation or how much dose or for how long? Do they give us choice? we are going to see Surgeon next week for pre surgery appointment.If you can give me idea what kind of question should I ask him? I have never been through these things and even not anybody in my family and friends have any information about it. But your answer helps me thinking that radiation is not that scary as it seems.

Thanks everybody for their replies.

Hi dsj,

Did you had hard breast as i read in someone's comment that after radiation her breast was hard like rock. they are also doing lymph node because doctor said if  there is any cancer then it is better do to senitnal node test now.