Lumpectomy with no further treatment

Have DCIS, stage 0 with clear margins. Having second thoughts about rads and pretty sure will not do T. Am doing consult by Dr Langois. Checking out naturopathic onc in AZ. Prefer alternative treatments-supplements only right now. This coming from a nurse. So grateful for thread/info here.    

 LindaCrocker

Linda, I have done no homeopathic treatments.  I already eat pretty healthy and exercise every day.  Environment probably does have a lot to do with our health but once you are my age, the damage is already done.

I was 58 also at the time of diagnosis.  I had 3 lumpies, clear margins and did rads, and finishing up my 5 years of aromasin at the end of the year

I was lucky, I live in Central NJ with an assortment of excellent choices in docs for BC...for that manner for all sorts of health issues.  My surgeon is consdered one of the BEST in NJ.I did lumpies, rads and now close to ending my 5 years of AL

what is never or at least I have never read, on these boards is your personal access to good docs.  In my opinion, your choice is based on the docs you have available to you.  I remember a woman on my WW boards who lived in Alaska...she had few choices and yes, she passed

food for thought and good luck 

I had a lumpectomy done July 31 2012...Refused Radiation and Tamoxifen. My last Mamo was great..One nodule but benign.(Im so Blessed).

My Oncologist and Surgeon are still pushing Tamoxifen on me...Im like you LindaCrocker..I am refusing this although your two drs. agreed no other treatment..So there are Drs out there that go with than analogy. You have helped me tremendously with my decision this week.

I had DCIS Stage 0 intermediate and all Clear Margins.

Any other input is so welcomed..

Thank you Barbi811  

Ok Janet im thinking of you and Good Luck...thumbs up!!!!  

xonice2ceexo, whoever told you that you should have been put on Tamoxifen was wrong. 

If you'd had invasive cancer, then Tamoxifen probably would have been prescribed or at least discussed as an option.  But DCIS is different.  With DCIS, unless you had positive or extremely close surgical margins after the mastectomy, or unless you are extremely high risk (if you are BRCA positive, for example), there is no reason to take Tamoxifen after a bilateral mastectomy.  The risks and the side effects from the Tamoxifen are actually greater than your risks from the DCIS, once you've had a bilateral mastectomy. 

I chose to have only a lumpectomy  two years ago and I'm glad I did nothing more.

The surgeon did tell me that ideally I should have 4 rounds of chemo and 7 weeks of radiation. I was 70 at the time and had lived a great life already. I also had two chronic conditions- CFS and Fibro which made my life interesting enough.

The only difference in lifestyle  I've found in the past two years is increasing fatigue. The cause could be the aging process as well as many other factors. At my last appointment with the oncologist, I was 'clear'.

I don't think about it very much at all.

I, also, was very hesitant about radiation, for all the obvious reasons. I, also, considered stopping after I started.  I believe that is generally thought to be a bad idea, as you have had some now, and already may not be able to do it again later, depending on the doc and I don't know what else.  I, also, was not going to do the boosts, wanting as little effective radiation as possible.  After asking a lot of questions, I went ahead with the boosts, as there is an added benefit to the tumor bed area, very little additional damage, and it was my one chance to get everything beneficial out of rads that I could get.  As to the one-time chance for rads, I finally got that I needed to treat the cancer I had now as best I could with what we have available at present, rather than a possible cancer in the future.  I know just how you are feeling.  Hang in there. xx

That's no fun about your husband.  As to the rads and the pure DCIS, my microinvasion really didn't make the difference.  The rads cut even pure DCIS recurrence in half or more, and when DCIS recurs, it is half the time as DCIS and half the time as invasive breast cancer; no way to know which one it will be if it happens.  I was very against rads, especially before I knew about my tiny micro (and am still quite unhappy at having had to have radiation), but I just couldn't get away from the numbers.  Margin size is also important.  I consulted Dr. Michael Lagios (you can Google him; he has a website with info), the 30-year world expert on DCIS.  Consults through mail (your pathology and reports) and phone, $635 and worth it.  He does not always agree with having rads; in my case he did, more because of clean but narrow margins than because of microinvasion.  I don't know, however, how that would work now that you've started.  They do return calls promptly.

Hi rettemich,

I was very much on the fence about rads before I had them as well, particularly since it was my left side and I was a smoker in another life so I was worried about my lungs and my heart as well. But, I wanted to do everything possible to prevent recurrence. I had a re-excision for a close margin and then all margins were over 1cm in size which is huge but I still opted in for the rads. I look at it this way. If it comes back, even after all that I did, I will have a mastectomy anyway so was not worried about "using up" my one chance. I did a one week clinical trial of rads that had rigorous qualifications so that did help my decision since I was done so quickly. Twice a day, 5 days and done. But, I had a lot of greys in those zaps so I did get the full brunt of exhaustion after I was done for sure.

I am also taking an AI with only DCIS because I was >95% ER+ so I did not dare chance it but I am hating this drug big time. I am also post meno so that is why I am taking this. Tamox was offered first, but I have a family history of blood clots/stroke so opted for an AI instead.

Do NOT second guess your decisions. Once you make them, don't look back cause you did what is right for you at the time. Dr. Lagios said I did not need rads but I did them anyway...glad I did! Best to you! xo

I have to admit yesterday was a horrible day. From the time I woke up, I was just really angry and confused. Then I went to my appointment, and they spring a young little whipper snapper of a boy on me. I know, I  know, it's just that I was feeling so Fat and after the blow-up with hubby that was the last thing I needed. Probably wouldn't have bothered me if I had been in a better frame of mind. Laid on that gurney just balling my eyes out. They say they watch us but I don't think they really pay attention. Get 'em and Get 'em out. Some kleenex would have been nice. Just kept hollering Don't Move. So basically I had a complete melt down. So my dd took me and when we got home she had to "go to the gym". Dh came home and told me it must be the meds. Not everything I have been going through. Whatever. I have decided one thing for sure whether hubby likes it or not, I not doing the boosts. My RO indicated, of course she couldn't tell me, that I probably didn't need them. My girlfriend was with me that day and she picked up on it too. In fact she said it before I did. So I don't think I was reading into anything.

Thanks for the advise guys. My terror comes from years of lung issues. Pneumonia as a kid and bad asthma as an adult. Which I finally have the right combo to keep it under control. And heart disease runs in the family so I'm worried about down the line. Plus they took over 1,000 grams of breast tissue from each when I had my mammaplasty. haven't been this small since I was in my teens. Now I'm afraid it will turn to mush or end up hard as a rock. (A little vain, I know) 

Instead of me "adjusting" I think my family needs classes on how to handle and be supportive.

 YEIKS! Sorry it was so long..... OK vent over....

I have never heard of this before, but I hope your oncologist acts on it right away. The inverted nipple is one of the signs that you might have cancer, but your medical team knows far more about this than I do.

Good luck getting an app't  ASAP.. I'd be nervous too. My mother used to tell me not to worry until there's actually something specific to worry about. I wasn't very good at this (and neither was she!).

I guess I'll follow my own suggestion and share what's new in my world.

I'm having cold and hot sweats at the slightest provocation. Going through menopause was much easier than this. At 56, I had the odd hot flash - maybe 3 per week, but now, almost constantly it's one or the other for the last month.

My medication has not changed at all, nor am I doing anything unusual. Does anyone have an idea before I contact my doctor or oncologist?

The "once-only" option regarding rads applies to a particular body part, not to a person. If you have rads to the whole breast for DCIS, that does not limit your options of having rads in the future for other parts of the body including nodal areas to which breast cancer can recur. 

edited to add: In some instances rads can be done more than once to a single body part, but I would agree not to count on that. 

redsox is right, the once in a lifetime applies to body parts, not the person. I have had pelvic, left breast and right breast radiation, so I know you can have it more than once as long as it is a different part of the body.