Topic: lumpectomy vs mastectomy - why did you choose your route?

Forum: DCIS (Ductal Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for DCIS.

Posted on: Jun 13, 2013 12:54PM

Posted on: Jun 13, 2013 12:54PM

ealga wrote:

Hi all, 

i was wondering if anyone could elaborate on this question. i have multifocal, grade 3 DCIS, and am contemplating another lumpectomy vs a mastectomy. my surgeon is confident she can clear the margins with another lumpectomy, and recommends radiation afterward.  BUT anecdotally, so many women I’ve talked to, even with a Grade 1 single foci lesion, opted for mastectomy.   I don’t want to undertreat OR overtreat but I am struggling to figure out why women would make this choice and what am I missing?  I'm at a very cutting edge cancer hospital if that matters.  I'd love any perspective on this.  Many thanks in advance. 

Dx 4/4/2013, DCIS, 5cm, Stage 0, Grade 3, 0/0 nodes, ER+/PR-, HER2- Surgery 5/14/2013 Lumpectomy: Right Surgery 7/9/2013 Lumpectomy: Right Radiation Therapy 8/27/2013 Breast Dx 9/23/2020, IDC, Right, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 11/6/2020 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Latissimus dorsi flap, Tissue expander placement Chemotherapy 1/4/2021 CMF
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Sep 30, 2013 01:09PM deafitmom4 wrote:

starmusic- thanks for the encouragement! its been 10 days out since surgery, yes im still sore from the TE...like you, Ive been putzing around the house a bit, cant help it, maybe thats why the pain gets worse ha I have been staying up later and later...guess I better cut that down and get to bed earlier. My hubs will b home all week, so that ll cut some of the chores down...hes been so great and supportive :)

For those that have had mastectomies w immediate reconstruction, can you describe the pain? For me, its combination between burning, sometimes sharp shooting pain here and there, and electrical stimulation....also feels like wearing a warped underwire bra that keeps tugging into you and you feel like you need to adjust it, but theres nothing to adjust...how long does the pain last? my PS put in 120cc's immediately, and I go in next week for my first "fill up" as I call it..does the pain continue or does it change as you get used to the muscle stretching? The percocet works the best to mask the pain, tho Id rather not rely on that as it is extremely addictive. I was told valium helps a lot, but will that help with the pain? it would make sense as it is relaxing the muscle as it expands, thus less pain...
on another note, I saw my oncologist, and my treatment is hormone therapy with tamoxifen. No chemo :) my HER2 was negative, lymph nodes were negative(I did have a sentinel node dissection)and I am considered cancer-free....

Dx 8/8/2013, DCIS, 5cm, Stage 0, ER+/PR- Surgery 9/19/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Nipple reconstruction, Tissue expander placement Dx 9/20/2013, IDC, <1cm, Stage I, Grade 1, ER+/PR-, HER2-
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Oct 21, 2013 11:32AM Peachygirl wrote:

hello there deafitmom4,

The pain does get better in some ways..I no longer have the itching... The electric zapping feeling and burning only happens for a few days after each fill because I'm at the point of overfilling now..at first my fills were virtually painless all I needed was Advil and I would be a little sore for a few days....now that I have started to overfill in my TEs I need pain meds and alieve for a couple i after each fill but it goes away after that...hope you find what works for you...I have a feeling the pain will go away and just be uncomfortable after the fills have finished and after the exchange has healed it should be even better :)

Hard times in life can make you bitter or better...choose to trust God through the hard times and you will always come out better Dx 7/26/2013, DCIS, 2cm, Stage 0, Grade 3, 0/4 nodes, ER-/PR- Surgery 8/18/2013 Mastectomy: Right; Prophylactic mastectomy: Left Surgery 8/18/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
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Oct 30, 2013 11:54AM claireship1 wrote:

I had a DCIS right side with lymphnode involvement. They tried an initial lumpectomy but could not get clear margins so they then hd a mastectomy and the found the cancer throughout the breast and also in four lymph nodes. I had radio therapy which I did not find too bad and after arguing with them for a year they agreed to remove the other breast. So why did I want this? One breast was no good to me. I was permanently uncomfortable wearing a bra with a prosthesis and found it impossible to swim properly and and do my gym exercises. I am quite happy under the circumstances to be completely flat chested now. I choose clothes carefully and I find that having no breasts is not the end of the world. At the time when I was arguing to have the second breast removed they kept stressing it was no guarantee that the cancer would not recur but at a subsequent checkup with a junior doctor on the team he said that it massively reduced the chances of recurrence so I am happy with my decision. It probably helps that I am tall and slim so on casual observation I look normal

I once heard a breast cancer specialist on the radio saying that breasts are simply modified sweat glands- I find that a good thing to keep in mind. As someone else said it's not like losing a leg or an arm. I also have lymphodoema in my right arm which is a massive nuisance but at least I am still here.

I didn't have reconstruction because so many of my friends have suffered pain and post op infections and even a pulmonary embolism so for me it's not worth the hassle of more operations. I often feel that the reconstructive surgery is a bit of a vanity project for the breast surgeons but maybe Im a bit cynical. We must all make our own decisions. There is no right way to do this.

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Oct 30, 2013 04:03PM beesie.is.out-of-office wrote:

Was it a male breast cancer specialist who said that "breasts are simply modified sweat glands"? I certainly have never thought of my breasts that way. Sweat glands don't feed your newborn children (not speaking from experience here, since I never had kids) and sweat glands aren't erogenous zones (my breasts have always been very important to me in that area).

I agree that losing a breast is not anywhere near the same as losing as arm or a leg, but when you consider that many woman who have mastectomies experience phantom feelings (itching, pain or even pleasure), it becomes clear that our bodies don't make this same distinction.

Having had no choice about the MX on the cancer side, keeping one breast was good for me. Not as good as two, but 8 years out from my surgery, I am very glad that I kept one natural feeling breast. So it really is a matter of personal preference. As for reconstruction, I don't think most breast surgeons care if you reconstruct or not, but I agree that for some plastic surgeons, creating a perfect breast might be a vanity project. However I think for women the reasons for reconstruction vary widely and can be a lot more practical than that. In my case, since I was having the single MX and I would be uneven, I didn't want to have to deal with a prosthesis every day. And I wanted to be able to wear my old bras and my old clothes - I didn't want to look any different at the end of all this. I think for me it was a question of trying to ensure that breast cancer had as little long term impact on my life as possible - I didn't want to give breast cancer the power to change my life beyond what was really necessary. So reconstruction was important to me to help me achieve that goal. I didn't worry that much about how my reconstructed breast would look - I know that it's a fake so I wasn't trying to make it look as real as possible - but I get dressed every day the same as I always did, and I wear the same bras and same clothes. That's what I wanted. For other women, the appearance of the reconstructed breast may be more important to them, and that's fine too. And of course it's fine to choose to not reconstruct at all - I think that's a great option (certainly the easiest) for women who choose to have a BMX.

claireship1, I do have a question about one thing you said. You mention that you had DCIS with lymphnode involvement. Was any invasive cancer also found, along with the DCIS? Or did you have an occult invasion, i.e. the invasive cancer was never found? DCIS by definition can't travel to the nodes, so any time there is nodal involvement, it is assumed that there has to be some invasive cancer present (usually in addition to the DCIS; IDC and DCIS are often found together). The presence of positive nodes also changes the staging. Pure DCIS is always Stage 0. With 4 positive nodes, depending on the size of the invasive tumor, the staging could be either Stage IIA, Stage IIB or Stage IIIA. What was your stage? With 4 positive nodes, did you have chemo?

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Oct 31, 2013 05:28AM gtgirl wrote:

I am choosing a mastectomy of my left breast surgery TBD. I met with the Team Monday Radiation Oncologist and my BS Surgical Oncologist. It is a personal decision for me at this point. I found out I am ER-/PR-. they don't due HER2 for DCIS Stage 0 intermediate high grade. There is a study, if I would of chose Radiation. A lot played into my decision. Peace of mind, no radiation, reoccurrence percentages and the fact there is no medication I can take after since I am ER-/PR-. I still don't understand fully the hormone receptors. I have done some research. I am going to ask if I can be tested for HER2 and if that is negative, then my question is do I have Triple Negative BC? This is confusing to me? If the HER2 is positive, then it sounds like there may be something I can take, but again I am not sure. This is a gray area for me.

Surgery 10/15/2013 Lumpectomy: Left; Mastectomy Dx 10/23/2013, DCIS, Left, <1cm, Stage 0, Grade 3, 0/3 nodes, ER-/PR- Surgery 11/19/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left
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Oct 31, 2013 04:28PM beesie.is.out-of-office wrote:

gtgirl, I don't want to move away from the topic of this thread (lumpectomy vs mastectomy choice), so instead, here is a link to another thread in the DCIS forum with a detailed discussion of HER2 status for DCIS. There is also some discussion about ER/PR status as well: HER2 testing

It's important to always remember that DCIS is different from IDC. With IDC, many of the concerns about aggressiveness (grade, triple negative status, HER2+ status) relate to the risk that the IDC might develop into mets. With a diagnosis of pure DCIS, because DCIS cancer cells can't move beyond the breast (no matter how aggressive), the risk of mets doesn't exist (at least not unless someone has an invasive recurrence). Therefore because we are dealing with breast cancer that is completely confined to the breast, the threats from an aggressive pathology are not nearly so concerning as they are for someone who has invasive cancer. And because of that, the same treatments won't always be given to someone with DCIS as would be given to someone with IDC (chemo for triple negative and Herceptin for HER2+ being two examples). On the BC.org discussion board, most of the discussion centers around IDC. So it's easy for women with DCIS to become concerned about things that aren't relevant to DCIS, or worried that they aren't being properly treated because they have an "aggressive" pathology but aren't getting the same treatments as someone with IDC. So it's important to always remember that DCIS is different.


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Nov 1, 2013 06:46AM 1boob wrote:

I had a mastectomy for the breast containing DCIS. I asked about a double mastectomy and the surgeon suggested not, as I was in a hurry to get back to my then ill husband. I thought he had only days to live at the time though he survived 18 months longer. The surgeon said I might regret losing both breasts. So I have one natural breast left. I decided no reconstruction as it would have been a 7 hour op instead of a 4 hour one. The surgeon's advice was correct for my situation at the time.

Now two years on, my husband has since died (of lung cancer) and I am free to make decisions entirely for my own welfare. I have considered the question of a mastectomy on the other side and I have considered reconstruction. At the age of 69 I think I will do neither - can't face the bad effect that anaesthetics had on my thinking. I think it killed lots of brain cells and I prefer to keep my brain cells as far as possible. My brain is more important to me than my breasts at this age. I have some discomfort and surface pain on the mastectomy site but do not take painkillers as I have decided just to get used to it... which is happening. I don't feel it so much now. I have difficulty with prostheses as the remaining breast is large and I have some fear about developing cancer in that breast (though I know the odds).

So all in all... Happy about the mastectomy which was necessary due to multifocal comedo DCIS. Happy about having no reconstruction - don't want another man in my life. Quite like having a sensitive natural breast for self-pleasuring (hope nobody is shocked by this). Not quite so happy about prostheses difficulties and being lopsided. I can look back with hindsight and tell myself that a double mastectomy would have been preferable, but then I might have had two uncomfortable areas on my chest.

So hey. I had cancer. I am now well. The decision I made was not perfect but it was good enough. We don't have to make perfect decisions. When I remember how lucky I am to be alive, life is great.

Dx 9/2011, DCIS, 5cm, 0/5 nodes
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Nov 1, 2013 09:20AM beesie.is.out-of-office wrote:

"So hey. I had cancer. I am now well. The decision I made was not perfect but it was good enough. We don't have to make perfect decisions. When I remember how lucky I am to be alive, life is great."

Now that's perfect!!

1boob, I love your post because it really reinforces how individualized this decision is. We all have our own reasons for making our decisions. And we all have different things that we can live with and make work for us, and other things that we can't or don't want to live with. Both you and I made the decision to have a single MX, but you decided on no reconstruction and I decided on reconstruction. Other women choose to have a BMX; some opt for reconstruction while others decide to go flat. Then there are all the women who choose to have a lumpectomy and are happy with that choice. The fact is that none of these options are perfect, because every one comes with downsides (as well as benefits) and because none of us ever wanted to be in this position in the first place. But you decide what's best for you and you accept that and move on and get on with your life.

I'm sorry to hear about the loss of your husband, but I'm glad that you had him - and he had you - for those extra 18 months.

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Nov 19, 2013 09:36AM Mayanne wrote:

I'm due to go for my appointment at Mass General tomorrow to meet the surgeon and the oncologist.

Beesie, I just wanted to tell you that your post on Oct. 31st was very consoling to me. My DCIS (for now, anyway) is multifocal - one place .05cm - the other that was found .06cm. Estrogen and Progesterone negative. I don't know the ER status, but will find out tomorrow. It's also comedo type and high grade. I'd been reading before I read your post and the hormone negagive status along with the high grade comedo cells sounded like I wouldn't have a choice (and that might be a blessing, too, in some ways.) about whether to have a lumpectomy or a mastectomy. But in reading your post I see that DCIS options are different. What worries me is that this seems to be very quickly growing. I had a diagnostic mammogram in this breast in April and no cancer was confirmed. By October it's confirmed by biopsy and aggressive.

Maybe the recommendations will be so firm that I won't have to decide, because I think that in that case, I'd do what their experience told them was best. But I want to be prepared, so am reading all I can about your experiences.

Of course, in the short term, even if I'm in a high risk group for the DCIS coming back as IDC, the lumpectomy and radiation now seem so much easier to accept and deal with. But my sister, as I've told in another thread, went that route (although I believe her cancer was already invasive, because the took lymph nodes which were found to be clear and they wouldn't have taken them if it had been pure DCIS). She was more advanced than I believe I am now (although the lumpectomy will tell more). She had a recurrence of cancer 11 or 12 years later - only discovered last year and this time it's more invasive. Her current doctor believes this is a totally different cancer - for one reason it's hormone receptive this time and she's on meds). So, her recurrence may not have anything to do with her choice 12 years ago of not having a mastectomy at that time.

Our mother had breast cancer in 1978 at age 60, had an immediate mastectomy and radiation (at Mass General where I'm going). She had no recurrence in 33 years and just died two years ago. I know from talking to Beesie and Ballet that my situation is totally different from either of theirs physically and that treatment will be suggested based on my own personal situation. It's more that I'm identifying with each of them emotionally and by their experiences and of my reactions to their experience if that makes sense.

For instance, my mother had a mastectomy with no reconstruction - I don't even know if they did it in 1978. She seemed to handle it fine - was content with falsies - and they didn't even have to be professionally made - she would stitch a circle of panty hose fabric and stuff them. They were always creeping out of her pretty blouses and she would laugh. As you said, though, Beesie, I think that since it's available, I, myself would want reconstruction because - well, I can't even say why! I wish I'd be happy with no reconstruction, but I can't seem to accept that. It has nothing to do with vanity - I'm not fussy with my appearance. You'd think that since I knew my mother was happy despite one side flat, and because my husband wouldn't care, that I'd be able to accept it. I guess I wouldn't even care if I were flat-ish if I had a nipple and areola. Maybe I'd lose lots of weight in the future and both sides would then match (I'm overweight by about 30 pounds now and a C cup), anyway.

So, since I'm torn (at this point, anyway, until I hear what the doctors say tomorrow) would it be sensible to go ahead with the lumpectomy and wait until the pathology tests are back about whether there is anything else there or clear margins? And THEN be prepared to have the mastectomy with no misgivings? Or do women usually know upfront what they are going to do and just go for it?

Dx 11/13/2013, DCIS, <1cm, Stage 0, Grade 3, ER-/PR-, HER2- Surgery 12/29/2013 Lumpectomy: Left Radiation Therapy 2/6/2014 Breast
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Nov 19, 2013 12:47PM Annette47 wrote:

Personally, I think that if you have any doubts about whether a mastectomy is right for you, go for the lumpectomy (if it's offered) and you can always choose to go back for a mastectomy at a later date. Better that than regrets down the road ...

Dx 11/20/2012, DCIS, <1cm, Stage 0, Grade 2, 0/3 nodes, ER+/PR+ Dx 11/20/2012, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 12/17/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 1/20/2013 Breast Hormonal Therapy 3/31/2013

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