DCIS and radiation

[Dee T.]

I had my first mammo. in May, (I'm 41) no history of breast or any other cancer in my family. What was found was a 1.5 dcis, it was removed and the surgeon prescribed Tamoxafin, he alse sugessted I see an oncologist, which I did, and he sugessted radiation for 6 wks. I'm suposse to start today, I'm kind of scared and not sure if this is common practice since the surgeon did'nt seem to think it was that bad, he actually called it a non-cancer. Any thoughts or comments would be appreciated, Thanky you very much.

[CCF-RN,MSN-rf]

Dear DeeT:  DCIS (ductal carcinoma in situ) is the earliest stage at which breast cancer can be detected (Stage 0) and differs from invasive cancer in that it does not have the ability to metastasize or spread to other sites.  DCIS can recur locally following breast conserving surgery and the risk of recurrence in the breast can be significantly reduced with radiation therapy and further reduced with tamoxifen which also reduces the risk of a new cancer in the other breast.  Although risks and benefits of the various treatments must be determined on an individual basis, many women undergo radiation and take tamoxifen following surgery for DCIS.

[cinnamoncin]

I had dcis with lumpectomy and 6 weeks of radiation about this time last year.  The radiation wasn't bad for me at all.  I could not take the Tamoxifen however because of side effects.  Just had a clear mammogram last month.  Doing great.  Just hang in there.  Take good care of your skin during radiation.  Good luck to you.

[Sunday8995]

I was diagnosed with DCIS last month.  I will have a lumpectomy in several days.  Radiation may be necessary.  Would you please tell me how your breast looks  (size and color) after the lumpectomy and radiation?   What were the side effects of radiation for you?  My surgeon tells me that he will remove the tumor and a margin which will equal the size of a walnut.  How much was taken away from your breast?  I would really appreciate a response.

[losFeliz]

I had a lumpectomy for DCIS in March. Fortunately, I only had a tiny patch of DCIS in one area. Other than the scar, I can only see a small "dent" when I bend over and flex my arm muscles. The scar is about 2 inches long, and semi-circular. This is the most common incision for this type of surgery. The scar usually becomes almost invisible after a few years. Everyone is different. It depends from what area of the breast tissue is being removed, and "how much" you had to begin with. I am an average sized woman, and the lump was taken from the outer edge of the breast (if you were facing me, it would be on the right side -- my left breast -- at the 3 o'clock position.) Surgery was terrifying to me, but the result was almost imperceptible. Radiation, however, was another story for me. Results vary widely from radiation, and you would do well to read up on this. I am blonde with super sensitive skin. After 19 of the 35 prescribed treatments, I had to take 10 days off the rads because my skin became very burned, and the scar stretched out and turned quite brown. Don't get scared, though  -- EVERYONE IS DIFFERENT. A friend of mine, who is a redhead, had 35 hits of radiation, and had only mild irritation. Just be sure to ask questions, and be very proactive about your own treatments. There is an excellent product called Mederma for scars that works wonders. You can buy it over-the-counter, a bit pricey, but works miracles. Thank your lucky stars you "only" have a bit of DCIS. I know, I said to myself, "This is "luck? Getting any kind of cancer is luck? Haha!" But it really is, if you have no invasive cancer cells, clean surgical margins, and the DCIS was caught early. I had to learn to see it this way, because I have met a lot of people in the radiation waiting rooms who have MUCH worse problems than we do. Remember, if they remove the bad cells, and do radiation to kill any microscopic ones growing that they can't see, there is a 99.9% cure rate. Those are some ridiculously wonderful odds. You really are one of the lucky ones. As my surgeon said, if you had to get breast cancer, DCIS is the one to get. It ain't fun, but you with proper treatment, you should have a long life with a tiny scar at most. Take care, and good luck!

[Sunday8995]

I cannot even begin to tell you how torn I was between a mastectomy and a lumpectomy.  

My surgeon says he will take out a walnut sized tissue (DCIS plus margin) and that the incision will be a little longer than an inch.  You know what,  you and I have the exact same location DCIS and on the left breast too!  I'm only 5 feet tall with a B cup, so I guess I'm average like you.

I saw my plastic surgeon yesterday.  He described what a mastectomy would entail and he said to me that, given my choices, if I were his wife, he would ask me to go ahead with the lumpectomy.

That should have encouraged me to go with lumpectomy, right?  Right ...until I saw my 3 sisters in law, all working in the medical field, who described the awful effects of radiation.  So my heart sank.

Your comments are making me lean towards going with the original plan again.   The indecision is really more painful than anything I have ever been through.

My husband and 2 boys are begging me to stop thinking about "chopping off my breast and creating a fake one".

I'll probably have a nasty scar because I'm not fair like you.  And it's just too bad that the effects of radiation are permanent (you can't reconstruct after radiation?).

Thank you very much for your comments!

[okflier]

I think I would get a second opinion.  Walnut size is pretty big for a cancer in situ.  They are usually less than 2 cm or the size of a green pea.  Much larger than that they have most often invaded the tissue surrounding the tumor.

I have just received a diagnosis of invasive lobular breast cancer ILC.  (yes, two different cancers, but similar treatments relative to size).  My "known" tumor is just over 2 cm with 3 different measurements on ultrasound.  Just over the size of a pea.  I am a 34 B and petite.  I just spoke with my surgeon today and breast conserving surgery is "out" for me as he would have to remove too much tissue to leave me with anything that would even resemble a normal breast.  I have decided on mastectomy for a lot of reasons:  the size of the tumor and the necessity for tumor reduction chemo pre op, the nature of this kind of tumor, and down time.  I am single and self supporting.  I just cannot afford the down time of having chemo, surgery, chemo and radition over the course of 9 months to a year and still have the potential for a recurrence.  Plus my kind of tumor is not usually visible on mammogram when it is small.

If it matters, I am a RN.  My main priority in this is to LIVE.  If there is time to do a little research and get another opinion, that is what I would do.  I really feel that anyone who loves you will do so with or without a breast(s).

[Sunday8995]

Thank you very much for your comments.  


I saw the medical oncologist and the radiation oncologist yesterday and they both said that although I only have DCIS, it is considered to be high grade in nature (the cells are more aggressive than that of the low grade DCIS).  They both agreed that a walnut size would provide good margins.

Up until two days ago I was really tempted to go to another hospital to show my slides and reports to another pathologist, but I learned that two pathologists concurred with my current report, so I'm just going to go ahead with the original plan:  walnut size lumpectomy.  I will have 33 days of radiation for 5-10 minutes a day.

I admire your determination and positive attitude.  My physical problems are minute compared to yours and I should be grateful.  Instead I feel no joy in anything.



Thanks.

[Sunday8995]

It has been almost 2 days after my segment resection (lumpectomy) to treat my DCIS.  Before the surgery the radiologist inserted a wire, guided by sonogram, to hook right onto the tumor, which was .5 cm in dia.  Then I had another mammogram to guide the surgeon in the actual surgery.

Now I wait for the path report.  I am pretty surprised by my incision and the size of my left over breast.  My surgeon said he was going to take out a walnut and that the incision was going to be about 1 inch long.  I can hardly see the incision, and my left and right breasts still seem to be the same size!  It may be because the affected breast is still swollen from the surgery.  I am so hoping that radiation won't be necessasry.

[Sunday8995]

It's me again.  Remember how happy I was about my surgery to remove my DCIS?  And remember how my only worry was whether or not I was going to need radiation?  My world just collapsed today.  It's been a week since my surgery and my oncologist said that I have invasive breast cancer.  They will need to go back in, remove lymph nodes, and I will most likely need chemotherapy, then radiation.  There you go.  Just like that.  And that's not the whole story.

The conversation above happend 2 and one half hours after my surgeon gave me nothing but good news.  As if he had a totally different path report, he told me I was fine and that I will not have to see him again.  Maybe radiation, he said, but that was between me and my oncologist.

Can you believe this?  I actually told my oncologist (whom I've only seen twice) that I was not leaving until he took back what he said or told me he was joking.  At this moment I am waiting for an explanation from the surgeon.

Somebody please tell me what's going on!!!

[CancerVixen]

I know you feel like the rug has been pulled out from underneath you right now.  Breath - take a breath and take it all in.  I am coming off of 9 month diagnosis of DCIS 4 mm in left breast and 8mm infiltrating DC in right breast (found on MRI and not seen on mammogram!!!).  I had three surgeries in 4 weeks - both lumpectomies and right side lymph node removal (7) all clear.  I wanted to keep my breasts (I have under muscle implants and have had them for 5 years took me from a A- to a B+) I told her if my mammo shows different things in October then she can have my boobs, but not until then! My female doc. was very conservative in her lumpectomies and I too thought that I could get by with radiation.  I started chemo in March 2005 finished in July and am now entering my last week of radiation starting this coming Monday.  I'm not painting a rosy picture about any of this but my approach to this has been one of courage and a bit of a ***** tone!  I will not let this take over my life.  My husband has been my oxygen throughout and my two young sons and husband all shaved their heads when my hair fell out.  Get good support behind you and head straight into this with all guts and strength out.  I believe that positive thoughts out way negative and I trust and believe that you will come through this stronger than ever!  You will be in my prayers.

[Razzleberrys]

Hi.

I was dignosed 3.5 years ago when I was 46 with DCIS. I had two lumpectomys, one to remove the DCIS and one to clear the margins. I am small breasted and probably had a walnut size area removed, although at first, my breast looked awful. But as my doctor said, within a few months the area filled in. It's only visible when I lay on my back as a dip.

I refused radiation. After reading about the side effects of radiation, how some of it hits the heart and lung no matter what, I decided against it. Apparently a lot of women with DCIS are not going the whole prescribed treatment. There is a good older article in I think the "Times" about them (doctors) not really knowing how to treat DCIS and so they give it the shotgun approach. Some consider it overtreated.

The other thing that gave me pause, is that radiation changes the texture, shape and size of the breast over time. Once you have radiation, it's very difficult or nearly impossible to have reconstructive surgery later if the cancer comes back and you have to have your breast removed. The skin doesn't stretch due to the radiation. So I figured that since DCIS is stage 0 cancer and in 80% of women doesn't ever become aggressive or spread (I found this out thru internet reading) I would take my chances and not go for extreme treatment. This worked for me and I have no regrets, but I know for some, they would want to not take any chances, at all.

I just wanted to give my opinion on DCIS and how I handled the treatment end. The emotional part was overwhelming at first. I had anxiety attacks which were new for me. I would wake up at night and sit outside in the dark unable to sleep. It was pretty awful for the first month or so. But now as time has passed, and I've read even more on DCIS, I'm not afraid at all and may have even taken a "closely-watched" mode instead of surgery if I knew then what I know now.

Make sure anyone who is newly diagnosed reads all they can and doesn't just rely on the doctor's word. After all, it is your body and spirit and you do have and can make, choices. There are varying opinions out there regarding DCIS and you need to form your own.

Good luck to anyone who is going thru this now. I know it's hard, but you will get through no matter which way you go.

[JudiK]

I am 44 years old.  Paternal grandmother had breast cancer at 78 years of age.  I had bilateral mastectomies on 6/8/2005 for DCIS in left breast. Right side was prophylactic.  Immediate reconstruction was begun during surgery.  Sentinal node biopsies on axillary nodes were negative. No bruising, no pain, just pressure from expansion.  Yes, I am blessed to have done so well.  But, if anyone with DCIS is considering bilateral mastectomies, I am confirming that it was the right decision for me.  I had had 8 biopsies since 1991 and am relieved that my breast tissue is GONE!  Final saline implants will be place October 24, 2005, then nipples reconstructed and tatooed shortly thereafter.  Husband(50), son(19), and daughter(17) were totally supportive.  No chemo, nor radiation will be done. I am three months post-op, and feel great!

[JAB2]

Hi,
I have just read your post from 9/08.  You are the first person that have the same views on treatment as I do.  However I did finally submit to the radiation after alot of research.  I too was afraid of the damage especially to the lung as I scuba dive.  I was assured I would have minimal scarring and should not have any problems.  Recently I had a High Resolution CT Scan to determine if I did have any and fortunately did not.  I did try taking the Tamoxafin, however the hot flashes was unbearable.  I stopped taking it after 3 months.

I was diagnosed with DCIS in 10/2003. I had 2 lumpectomys, as you did.  I had my last mammogram in July and everything looked good.  Hopefully it will stay that way.  Good Luck to you.  

[Razzleberrys]

Hi.

It's nice to know that I'm not alone out there. I appreciate you writing to back to me. Hope all continues well for you.

I suppose I have some strange attitudes towards DCIS and cancer, et al. My boyfriend's (of 21 years) sister was diagnosed two months after I was, but with a lump and stage 2 cancer. She has spent the last several years, in and out of doctors' offices, forever sure that cancer has returned. She had her overies pulled out a year or so ago to ward off any further hormone interference and is constantly on the lookout for where the cancer might have gone or might be. This is her life and she can live it anyway she wants. Me on the other hand (remembering that I only had DCIS) would simply like to stay out of the way of doctors, unless I choose a treatment or something optional like a facelift  :-). Could be like sticking my head in the sand, but I don't want to spend the rest of my life looking for a disease. I have even looked at mammograms in a new light and may never have another unless something obvious pops up-this is NOT TO SAY that I could suggest this to others. We all have to be comfortable with our medical decisions whether or not they agree with the norm or even if they are life threatening (or not).

My mother had stage 2 breast cancer 17 years ago and went through the whole thing and I had a close friend who had stage 3 and survived. It's unfortunate that so many women are having to deal with it in one way or another.

Well, that's just my two cents for today. Hope everyone stays well and informed.

[healthcareguerilla]

Razzleberrys comments from September are most welcome. In 1998, I was diagnosed with DCIS and LCIS.  Had excisional biopsy for a painful lump that it took two years to get properly examined.  Nothing more.  Proper margins not taken.  Before, during, and subsequently, any screening process has been so permeated by ignorance, ill-treatment, disbelief in "my story", etc., that I have not had a mammogram or sonogram in over a year and a half. Mammograms revealed nothing.

I do not believe this is a head-in-the-sand attitude.  But it is horrific that it is overwhelmingly difficult to enter the screening and diagnostic system with ANY degree of security.

For five years I tried to fight the misinformation bandied about regarding the Breast and Cervical Treatment Act -- well, when it was bandied about to the public at all -- I gave up trying to get administrators to publicize the diagnostic and treatment options accurately and comprehensively.  NOT just a program for "poor women"...NOT just paying for mammography...

So it's been seven years.  Last night I found an excruciatingly painful lump in the breast which had had the biopsy.  I am three-years post-menopausal -- HEY!  Here's a good question -- why isn't anyone, (seven years later), still not speaking to normal and unusual sensations, growth-like things, etc., in the truly post-menopausal woman?!).

My original lump was painful.  Even as I write this, my greatest anxiety stems from having to enter a system I do not trust.  But I refuse to believe we do not have the science to accurately diagnose this new lump -- but getting past the attitudes, having to ask practitioners questions they hate like -- When were your machines most recently tested?  But ya gotta ask everything.  Everything.  One hundred times.  One thousand times.  Whatever it takes.

Would someone out there like to advocate for me this time?  I am much less the guerilla health care woman I used to be.

[Razzleberrys]

I just read your post. I am so very sorry that this is happening to you again-although when you wrote, you hadn't yet seen anyone. I hope this time that it's just a beign lump. Please keep me/us up to date on what happens. Will be thinking of you.

I have not had a mamogram (mammogram) for 1.5 years now. If I find a bump, I guess I would be thrown into the medical maze again. Like I mentioned before, I tend to stay away from doctors (now) unless I want to go. Was not given complete information by my surgeon, but did research heavily DCIS at that time. I met with the radiologist to make everyone happy. The fact and care sheet they gave me did not contain one piece of information I was not already aware of and left off a few items. This did not surprise me.

Have you read the book called "The Politics of Breast Cancer"? Boy, what an eye-opener. The company that makes tamoxifen polute their near by river with breast cancer causing waste-they are also the folks behind "Breast Cancer Awareness Month". Sure gave me pause. Regarding treatments in the book, the statement was made that basically surgeons want to do surgery, oncology docs want to do chemo, and of course it goes to follow that radiologist want to give radiation. They all want to pratice what they have been taught (I guess we all would) and they all want to treat you.

Ok, enough. Healthcareguerilla, good, good luck to you. Please let me know.
I will look for your post.

[healthcareguerilla]

Thank you for writing. Yes.  I believe it is Astra-Zeneca, or some such untrustworthy company behind many allegedly 'breast health' garbage.  I have not read the book you mentioned. There is nothing quite like being an experiment. Just as bad, in terms of getting to the sources of breast cancer, and better treatment, is, I believe, the pink ribbon syndrome, which makes breast cancer seem like a badge of honor, or a day out with "the girls".  

Now, I have no problem with pink.  It is the feminine vibrational color -- it is said.  But you sure don't see blue ribbons for prostate cancer -- then again, a "blue ribbon" is first prize, isn't it.  That would figure.

Anyway, the book I found most useful other than S. Love's was Susun Weed's 'Breast Cancer? Breast Health!'  At different times, various sections of it helped enormously.

I could have had films done tomorrow - Tuesday - but as it is my birthday, I decided not to jump on that potentially runaway choo choo until Wednesday.  So tomorrow is a 'free' day.

I am certain we could exchange diagnosis and treatment horror stories.  It is enough, I think, that every woman who reads these posts does whatever she needs to do to get answers and make the best decision she can.  There is, after all, no perfect answer, except, perhaps, the one which we make without fear.

It surely would be helpful if women would disclose their actual findings -- lumping (pun intended) every diagnosis as "breast cancer" does not acknowledge the finer points of diagnosis, and, I believe, all too strongly influences women's decisions.  But again...I would never, ever say that what any woman decides is not the 'perfect' decision for her.

I trust 'Razzleberrys' indicates you are a Magoo Xmas Carole fan?  If so...great!  Being DESPICABLE in the eyes of those who might tell us we don't know our own breasts from a space monster, is an honor.  You take care, too.

[Razzleberrys]

Yes, you caught me. I am a Magoo Xmas fan. My brother and I even own the movie and happy birthday! I had  mine last week.

This will be short as I have work to do. I liked so much what you said about the perfect answer perhaps being the one we make without fear. There is so much truth in that statement and I suppose that's all I've wanted to pass along to others. Our own choices, our own life, to make treatment decisions as we feel comfortable with them, not simply as we are told or expected to do. Once I decided against radiation, a huge weight lifted and I know for me and me alone, this was absolutely the correct decision.

Health issues of all nature will always be somewhat of a struggle for me. I have great spiritual belief and don't fear death and don't feel like I have to keep on going on and on and on. My girlfriend's father just died after deciding no more chemo treatments. He had had three. I had the chance to have dinner with a great legend female surfer. Her name was Rell (sp?) from Hawaii. My boyfriends's sister is good friends with their family. She fought breast cancer for something like 14 years. Her love of the ocean kept her going thru treatments and she is to be remembered for her great courage in the choices she personally made. That's just it. We have to accept the outcomes and never look back.

Have a good time today, rest, and the best to you tomorrow.

[healthcareguerilla]

All is well.  Hallelujah.  And, at long last, I am told that dense breasts will stay dense even post-menopause. This is not information I have been able to find anywhere either.  Thank you.  "We'll have the Lord's bright blessing....!"

[Razzleberrys]

I am so relieved for you! and good info too.  Yes, with Xmas almost here "in knowing we're together, knowing we're together hand in hand..."

Funny how you remember these things and certain people too.

Sue

[healthcareguerilla]

I can't believe it.  I just wrote a tome and there was a Microsoft error which deleted the entire thing. The jist was that proper procedures had not been followed; that there must be nationwide standardization of protocols; that I had pooped out on this one and just didn't want to fight the bs; that I am now back to myself and will do and say what I should have done; that I am tired of how the system itself, (the lack of one, really) is almost as wearing as any disease -- it creates dis-ease; and that I want an agent. @#$@@!!! computer programs.