To Have Surgery or Not to Have Surgery?

rophilly

Hello All, 

I am 44 and recently diagnosed with Grade 2 DCIS.  I feel reluctant to have surgery. Has anyone seen any studies (or have any info.) on delaying surgery or avoiding it altogether?  Does anyone want to weigh in on this issue?  If you think I am reluctant on surgery, just wait 'til I get to the radiation stage.....Have a good day.

Thanks. 

rianne2580

Your are singing to the choir. I was diagnosed in 1994 with DCIS and did nothing about it. My worry free wonderful life ended last October 2010 when they spotted good ol' DCIS again. Now, to be fair, a qualified BS suggested I just watch it back in 1994. I did have a lumpectomy and recision, so I watched it for 17 years. Now there is all this treatment. I guess I will go forward with another lumpectomy and radiation, that seems to be the standard of care. I might get a mastectomy. I have very small boobs.

 Your best bet is to read, read, and read some more. There are so many wonderful stories and links and highly intelligent women sharing their experience. I learned so much from this blog. Get your ducks in order before you make any decisions. Know what you are talking about because DCIS is highly controversial and there are many different opinions out there. It's your life and your body, you have to do what is right for you.

Many Blessings and Keep the Faith, it will guide you...

Rainne

xtine

When I was diagnosed with Grade 2 DCIS I also balked at surgery or radiation. I don't know the size of your DCIS, but mine at the time was estimated to 8 cm (turned out to be 10 cm), and the only possible surgery was mastectomy. It seemed such a drastic move for something that might never turn into invasive cancer! I asked about watch and wait, or about using Tamoxifen alone. I was basically told by several docs that either solution would be "crazy", particularly given my young age (I am 37). While the DCIS might never turn into anything, the chances that it would were very high that it would turn invasive, or already had.

It turned out in my final pathology that I had 3 mm of IDC, so the DCIS had already progressed to something worse. So it was pretty obvious to me at that point that I had made the right decision. Luckily, with a mastectomy and wide margins, I was able to avoid radiation.

I don't know if I agree entirely with the "crazy" comment I got, but I do know that initially I was inclined to hope that the situation was not as serious as it actually was. I wanted to believe that DCIS was something that could be ignored or treated hormonally, and I never had to really experience any major disruption to my life. I ended up realizing that it was much more serious than I thought, and that even a mastectomy, while horrible, was doable and did not ruin my life. I also have realized how lucky I was to catch it "early" and how much worse it could have been.

I don't know if your head is in a similar place as mine was, but if it is maybe my perspective will help.

bdavis

Is there a specific reason you want to avoid surgery?? I have had 2 lumpectomies (one for ADH and one for IDC)... not a big deal at all, and no scar at all from first surgery... second one was last month, but already almost all gone... and with two surguries, my breast shape is completely unchanged... maybe I have great surgeons... don't know

Beesie

How large is your area of DCIS estimated to be?  And have you had an MRI?  In some cases MRIs can be more effective than mammos at showing the real size of the area of cancer. 

DCIS is breast cancer - but with DCIS, the cancer cells are confined to the milk ducts and therefore cannot move into the open breast tissue or to the nodes or into the body.  So DCIS is considered to be a pre-invasive cancer.  All DCIS presents a risk of becoming invasive although the risk is greatest and more imminent for those who have high grade DCIS, comedo type DCIS and/or large areas of DCIS.  In some cases such as xtime's and mine, the DCIS has already started to evolve to become invasive by the time it's found; in those cases, the staging immediately changes from Stage 0 to Stage I (or higher). While this is more likely to happen in cases where there is a large amount of high grade DCIS, there are cases where small amounts of low grade DCIS are found to be hiding some invasive cancer.  So the simple fact is that unless the DCIS is removed, there is no way to know if in fact it really is just DCIS.

I'll second the question from bdavis:  Is there a specific reason why you want to avoid surgery?  If you have a small area of DCIS, the surgery will be quick and easy.  And if good margins can be achieved, then you may be able to forgo radiation with relatively low risk, although you need a lot more information about your pathology before the need for radiation can be determined.  Even if radiation is recommended, it's your choice and your risk would certainly be significantly lower if you remove the DCIS, even if you don't have radiation.  

What is your doctor saying?  

CTMOM1234

While I wouldn't go so far as a previous poster who said that a lumpectomy is no big deal -- it was the first time I'd ever had surgery, first time being under anesthesia, and I definitely have a scar --  I absolutely cannot imagine opting out. As Beesie stated, there is no telling if it is just DCIS until it is removed and the pathology report is done. Believe me, I had absolutely zero indication that I had anything more than some grade 2 DCIS and was pretty darn shocked when the final path.report came in a week later that I had a small amount of IDC, too. No indication from the MRI or mammograms, comeo/crib type was fine, grade 2 seemed better than 3, no family history, no risk factors, just those little innocent micro-calcs in a cluster on a routine mammo at 43 years old.

rophilly

Hello Ladies,

Thank you so much for your replies. I am so grateful that you took the time in your busy lives (and I know they are busy) to respond.  I am reluctant to have surgery because it is surgery....a knife....a breast.....etc.  I do think you all have given me very valuable and helpful info.  I am meeting with my surgeon next week, so I should get some questions answered.  He is confident that I have a really great chance of getting out of this with no radiation, but we'll see. My surgery is scheduled for later next week. I am inclined to go ahead with it based on everything I have read here and in other sources. My sister-in-law and a good friend have gone through the same thing (DCIS) and have both provided me with many journal articles and hooked me to this site. Again, thanks so much.  

maxim

I completely understand  your  concern about having surgery. I had a left mastectomy at the end of Dec and was very nervous about the surgery. I'm going back in next week too,  to have more nodes removed. What helped me was reading,  researching  and choosing a top notch breast surgeon.I had a lot of faith in my surgeon, plus I asked for anxiety medication to help me get thru the week before and took it the morning of surgery, too. All of of this is very challenging and scary. but don't put it off, let the dr's get in there and find out what is going on, so they can give you the correct treatment. Lets be brave together   

peppopat

You  should contact this Doctor in  the San Francisco  area:

Hwang, Shelley" <Shelley.Hwang@ucsfmedctr.org

I  wanted to  get in the study myself  but one of my 2 pathology  reports stated that  I "might" have an invasive component to  my DCIS.  ( Tubular  type, which is rare and low-grade.)   You MUST  have   a report that  staTES you're entirely DCIS  and then she will discuss  your  potential for her program.   I  am NOT  in it.

JanS

It is important that you find out how large the DCIS area is.  This will help you and the surgeon weigh the options of lumpectomy vs mastectomy.  If you have a mastectomy, there will be no radiation afterward.  In my case, I had 8 cm involvement (this was determined by MRI) - so had to have a mastectomy - and had no radiation.  I was scared about surgery, too, because I've never had surgery before.  But I came through it okay and all is well now!  I completely trusted my surgeon, he has done many many breast surgeries, so I had no qualms about his ability.  Sounds like you're doing the research, which is great.  I found a lot of good info on BreastCancer.org and I talked to several other women who had mastectomies on one side before my surgery.  It helped keep me calm.  Best of luck to you.

bdavis

I should clarify about scars... I have no scar at all from my lumpectomy in 1998... time has faded it completely... I do have a scar from my Dec '10 lumpectomy, but that was only 2 months ago... AND I shouldn't really say a lumpectomy is no big deal, but it was absolutely painless (numb actuallly)... never had pain for me... in 1998 I got an infection so I did have some irritation then, but quickly resolved... recovery for me this past December was very quick... the SNB took longer (I have 2 scars) one from the lump. and one from the SNB... SNB scar may always be there, but had to be done, and its only been 2 months.

rophilly

To all of you have written, thanks again for your input and personal stories. My DCIS is very small as far as they can tell right now, so hopefully surgery will be tolerable.  I had two c-sections, so I have survived two surgeries before (and have two lovely girls to show for it).  I have the chance to ask some questions tomorrow when I meet with the surgeon again.  Peppopat: What is the study in SF about?  

Take care! 

rophilly

Maxim,

Wondering how you are doing.....I hope all is well.  I had surgery two weeks ago, and I am doing fine.  I think my surgeon did a great job.  Wishing you the best.

Deirdre1

Also wondering, this was a bit older so I didn't bring this up but if you are still educating yourself, why not have a psychologist added to your list of "specialists" so you have a better change of hearing your own voice.. sometimes we get overwhelmed and hear only what other's (especially doc's) are saying... Just a belated suggestion.. Best, Deirdre

vicmjones

What is an SNB?

bcolliegirl

what is so bad about radiation?

I see people saying and I didn't have to have radiation.

has to be a lot better than chemo?

CTMOM1234

bcolliegirl - I went through the standard 6-7 weeks of radiation treatments, and I'm glad that I did for the added protection in case a few stray cells remained after my lumpectomy. But any treatment has its stresses and possible short- term and long-term problems. For me, the anxiety and logistics of going through the rads. was far worse than the shor-term physical challenges.

Yes, I, too, imagine that chemotherapy treatments have far more stress and physical challenges than rad. treatments. I have seen rad. posts where people were extremely tired, but that was not my case. I did get mighty red and raw toward the end of rads., but these things are temporary and my "tan" is barely there. Everyone has their own experiences.

edwards750

I have Stage 1, Grade 1 BC. I had a lumpectomy a few days ago. The surgery was no big deal. I actually had more pain from the wires the BS had to insert before the surgery and the lymph node biopsy. I felt fine on Tuesday but yesterday didnt feel too well mostly from the pain from the biopsy. I also got a shock when I took a shower and saw the incision/scar. I know it is cosmetic but was still pretty gruesome. Should be hearing from the BS today or tomorrow about the Path report. Really nervous about that. He told my husband after the surgery that everything went well and there were no surprises. My suggestion to you would be have the surgery. Regardless of my outcome I am glad mine was caught early. At the end of the day surgery has to be better than the alternative. Good luck!