Having surgery soon and desperately trying to decide what kind is best to have. It is very confusing to me to try to interpret all I have read. Does someone know the statistics for the 2 scenarios I've described below?
1)With a diagnosis of invasive DCIS (Stage I), what are the statistics for recurrence,metastasis, survival for lumpectomy? For mastectomy?
2)With same diagnosis, but for Stage II, same questions as above?
Hi. There's no difference in terms of recurrence rate and overall survival comparing mastectomy with lumpectomy for early stage breast cancer (Stage I-II) as long as lumpectomy is followed by radiotherapy.
Hi -- I know how difficult a time you are having right now. I will tell you my recent experience, but as always, everyone's health issues are totally unique.
I was diagnosed with DCIS (Stage 1) - the major problem was scattered microcalcifications throughout the left breast. We opted for the lumpectomy, hoping the surgeon would be able to obtain clear margins. After almost 50% of the breast being removed, the pathology report indicated there were still some potential problem areas.
After much thought and discussion, I opted to have a bilateral mastectomy. I felt that I could handle no breasts more than looking at myself and seeing one. In addition, I was very concerned about the possibility of problems with the right and did not want to have to deal with the emotional turmoils again. Also - I have had mammograms, biopsies since I was 23 years old due to very dense tissues and non-cancerous lumps in both breasts all these years. I am now 59. Prior history was part of my decision.
I also opted (for now) to not undergo reconstruction. I may down the road, we'll see. It's been five weeks since my mastectomy and I feel great. I am awaiting an appointment with an oncologist to see about recommended treatment.
I wish you the very best and know that you are having a very hard time making a decision. I also think it's vital that you have support from your loved ones it making this decision. My husband has been outstanding.
Thank you so much for your heartfelt response! It is very illuminating to hear about your experience because it seems to overlap with mine in a number of ways. I also have had a number (5) of prior surgeries and biopsies on my breasts, plus my mother had breast cancer. I had initially thought that I would just go for the bilateral mastectomies, but then I looked at some photos on the Internet and I was afraid I would not be able to deal with it for myself. Now I am trying to weigh all of the statistics...eeek!
I am so glad that you are feeling good. Can I ask you some more questions? Did you have any nodes removed and are you having any edema in your arm? Is there much discomfort or tightness at the site of the scar? This is terribly personal, but how are you feeling about your body? I am afraid of being horrified by my own appearance. Sorry for the negative fears being expressed -- I would not feel that way about anybody but myself!
Thank you again for your response and I wish you the very best.
Do the recurrence and survival rates between lumpectomy and mastectomy begin to diverge when taking into account factors such as size of tumor (or area of microcalcifications), negativity for hormone receptors, age, or other facotrs? I ask because, while I am aware of the general consensus that the two have about the same outcomes, I'm wondering when that generality breaks down, if at all, with new particulars. I hope that is understandable and I thank you for any further response.
Hi -- You are welcome to ask any questions. We're all in this together. I very fortunately, did not have any nodes removed. The sentinel node biopsy was negative. For that, I am thankful. And, no, I have no edema in the arm, since no nodes were affected.
It's been five weeks now since my surgery and I have no discomfort from the incision. Of course, the first week, I was quite sore, but did not need to take any type of pain relief medication. It took me about three to four weeks before I felt comfortable reaching very high -- it felt like I was pulling on the incision. I was also very careful about not lifting anything heavy. Now, I'm pretty much back to normal.
Re: Feelings about my body. When I first was told I needed the mastectomy, I went through major anguish - like I'm sure everyone does. I met with a plastic surgeon to discuss reconstruction. After he explained the procedures that were available, I opted to not go through with it at this time. The first time (a couple days after surgery) I looked at myself, I was sad. Not depressed - just sad. I feel much much better now. I have also found a couple websites that have been extremely helpful.
I am wearing a prostheses when I go out in public and it gives me the self-confidence I need right now. I do not know if I can ever go "breastless" - it's one day at a time.
This is one of the sites that really helped me a lot in my decision: http://breastfree.org/index.php
Last -- Since I had lived with the fear of breast cancer since I was 23, I think the BC diagnosis was almost a relief -- and I don't mean to sound insane. But, I've expected it for so long, that although it was a shock, it still wasn't like someone who has not had any problems and then Wham---"you have breast cancer".
Sorry to run on so long. I'll be happy to answer any question you have about my experiences.
Hi I had a centinal node biopsy to remove my BC , this was five years ago. I was also offered at the time a bilateral masectomy because I had large breasts and would be quite unbalanced. Because I didn't know what to do and was so confused and upset about loosing my breasts, which I really did'nt relise how important they were to me until the BC came along at 36 I opted for a centinal node extraction, radiation and chemo.
Because of my family history It was recommended that I do a DNA test. It was discovered that I had the breast cancer gene BRAca 1 and BRAca 2. I was then told that I should consider a double masectomy then because it would be inevitable that I would end up with BC again.
So If your family has a history of BC consider very hard about the double masectomy. I understand your struggle but you must do what is best for you, good luck and I will be thinking of you and the struggle and distress that you are going through. remember . It Is All About You Now.
Hi. The following are conditions wherein mastectomy may be preferable over lumpectomy:
1. Presence of diffuse suspicious microcalcifications on mammography.
2. Disease that is spread too widely over the breast and cannot all be encompassed by a single excision which will produce a satisfactory cosmetic result.
3. Large tumor greater than 5 cm in diameter. Lumpectomy can still be done if the tumor can be shrunk by chemotherapy before the surgery.
4. Positive pathologic margins. This means that cancer cells were found on the margins of the incision site after lumpectomy. Re-excision may be attempted, but if the margins remain positive, mastectomy needs to be done.
5. Premenopausal women or those 35 years old or younger, who are known to have the BRCA 1/2 gene mutation. These women shouldn't have lumpectomy since they have an increased risk of same-breast and opposite-breast cancer recurrence if they undergo this procedure, instead of mastectomy.
Thank you again for your 2nd response and all of the information you shared. I have been having a very difficult time deciding which kind of surgery to have! I finally was able to have a meeting with my surgeon during which I asked ALL of my questions. She was great about answering them and then, at the end, she asked what I wanted to do... I said I don't know because I guess I just did not feel emotionally ready to have a mastectomy but also felt that's what I ought to do, considering everything. She said, "You know, we can do this in steps and there will be no greater risk to you." We discussed that for awhile and I knew that was the course I needed to take. So, on the 8th I'm having a lumpectomy and, depending upon the pathology reports, will go from there. Next time, should it become necessary, I will be ready for a mastectomy. My best to you and my deep appreciation for your interest and responses!
Many thanks for your response. It is very relevant to me because my mother had BC and my sister ovarian cancer or pre-cancer (not sure which). I am going for genetic counseling to determine whether I "qualify" for the gene test (which is expensive). If so, and if I am positive for the gene(s), it will be a no-brainer what to do! For now, I am having a lumpectomy on Tuesday. Then I'll see what the pathology report says, as well as the gene test, and go from there. I was not ready to decide to have a mastectomy right now, but I will definately get ready real quick if all results are not clean and clear. My doctor said it is okay to proceed in steps and that I am not taking any risks in doing so.
I take it from your message that you did decide to have a bilateral mastectomy around age 36 -- is that right? I know this is a huge question, but how has it worked out for you? I am almost 65, so that's very different. And yet, though I am necessarily having to give up on the idea of being attractive in the way our society defines, just because of my age, I find I am attached to my breasts. Or maybe it's more that I am attached to the familiarity with my body and am afraid of finding it foreign.
Sorry I took so long to get back to you. The computer is playing up. Any way. I was 36 when the BC was found and I have had a double tramflap operation about two years ago and I am now 42. I cannot recommend this operation. It has not been at all what I expected and I whish that when I had the option of a straight double masectomy at the begining of my BC Jouney, that I had taken it. However when you are scared, terrified, confused and numb, and in a land of desolation and distress it is not possible to think clearly. I Don't Regret Having Had the Lumpectomy first though.
My main reget is with the decision on which operation I chose. It was the wrong one for me and I cannot recommend it to anyone. I feel that I should have gone with the straight forward surgery of a double masectomy and inplants. Because they are just much more asetically pleasing. Its amazing what nipple reconstruction and areola tatooing can do to make your new breasts look normal.
Have you check out the breast cancer reconstruction sites. The are very good at giving you an idear of how to proceed, But do take your time. Also having radiation treatment makes it much harder to have implants.
Thinking of you and if you want to ask anything else feel free.
I had decided on a lumpectomy and (at this point) I am glad I did. I recently got the pathology report and it was very good: no node involvement, no invasion, and clear margins of 1 cm. The tissue the surgeon removed with malignancy was only about 1 cm. in diameter.
I had resigned myself to radiation, just to be on the safe side, but now I think I need to do some more research first. Thanks again for your responses!
I'm so sorry to hear about your experience with reconstruction. That must be very difficult to come to terms with. I really cannot imagine and I give you a lot of credit for adapting, to whatever extent you've been able to. I am not thinking about reconstruction right now as I finally decided on a lumpectomy and the pathology reports were very good. So, until further notice, I will not be thinking of reconstruction. But if I ever need to, I will remember what you said about your experience. I have read a few accounts of reconstruction that were not encouraging. It is unfortunate the way, when you ar frightened and confused, you tend to accept the recommendations of doctors without question. Everyone should just STOP and do the research before they decide anything! That should be a rule. My very best wishes to you and thank you again for sharing your expeience!
Hi, thank you for your concern, but It is not me that you need to worry about only yourself. Like I said take your time and learn all that you can about all the different options that are out there. Ask Questions, even if you may think that people think they are strange. Questions like, Will I have any feeling left where you remove my tissue ?. Or Can you Explain this procedure in detail and what can I expect in the future ? You know, all the questions that at the time you may not even be aware of, and later down the track you find that you were not informed about. Question, Question, Question until you are well informed and know what you are letting yourself in for. I feel that it is better to be forwarned than to jump in with a blindfold on.
Sorry I hope I have not been to negative because there are always great results and I hope that your decision will bring you the expectations that you forsee. Goodluck anyway. Keep me informed.
Hi, I just read your comment about the tramflap reconstruction. I'm considering reconstruction options and was leaning in that direction because I like the idea of using my own tissue rather than dealing with expanders & implants that will have to be replaced in 10 years. I met a woman who had the tramflap procedure and she showed me her breasts. They looked beautiful (and she's 60) and very natural. Obviously, that's just one person, so I'm in interested in another perspective. I'm 48, and very large breasted naturally. I know it's personal but if you could give me some details I'd appreciate it. Thanks!
Hi. I tried to post a comment to you last week. I am not sure that you received it. I have tried looking around on the sites, but I am pretty tecnologically challenged, and I'm sure computers like to trick me. Any way I hope this one gets to you.
Ok, Let me start at the begining. I don't think that I did near enough research about the options out there, and quiet frankly my surgeon was not interested in any other option but a double tramsflap, because it was the first one that he did in the new hospital.
Anyway, a double transflap was the operation that I ended up with. I was not informed about having no feeling or sensation from the scare line across the hips up to the breasts. My original belly button was removed and replaced in the right position, My muscles that were folded back to use as a blood source for the new breast tissues makes it very uncomfotable to lay on your stomack for more than about 20 minutes.
There is always an unnatural tightness across and throught out the operation area.
There is also the matter of sex, not something that is mentioned at all by the surgeon, or for that matter many of the sites on the internet. I certainly was not informed that your figure would change shape, especially around the tummy area, because of the lack of muscular support. perhaps that should be obvious, but it wasn't to me. And if you enjoy a full sexual relationship with orgasms and such you will soon find out that the orgasms that you enjoyed before the operation is a whole different ballgame afterwards.
Those muscles that once belonged running down your stomack to your pubic area are now folded up and twisted away from where they belong. So logically you would think that I would relise that an orgasimn would be different, But I didn't even think about it. But let me put it this way. the tightening that once happened downward now is confused and goes upwards, across and down. This is a really weird experience.
OK, sorry I have probably said to much but I can tell you more if you would like. You are welcome to ask what you want, I feel that anyone that is contemplating this operation should be made aware of all the good and bad thing about every operation.
I hope this has been some help. Feel free to contact me if you would like.
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