lumpectomy vs mastectomy - why did you choose your route?
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So are you saying they did not test the Sentinel Node?
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jojomg, I just looked back at your earlier posts and since this discussion is taking place in the DCIS forum, I want to clarify that your initial diagnosis from your biopsy was invasive cancer, not DCIS. Some of the DCIS women who are reading here might be concerned about the possibility of breast lymph node involvement but with pure DCIS, that's not a possibility. Pure DCIS is completely confined to the milk ducts and cannot enter the nodes, either the lymph nodes that are found in the breast, or the nodes under the arm.
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At age 45, the diagnosis was DCIS (10/2012 - reddish nipple discharge). I initially had a lumpectomy. Docs thought that would be it and I'd be done. Turned out my margins were not clear and the disease was larger than anticipated (10+ cm). It made no sense for another lumpectomy. Since we knew one breast was coming off, after much deliberation/praying/research, I decided to go with double mast. I didn't want to have to worry about this down the road in the other breast. Another whammy -- 2 lymph nodes were positive (something else that was unexpected by my doctors). I understood chemotherapy was in order but dug my heels in against radiation (what's left to radiate?!). Docs finally convinced me to do RT because test results showed the disease was very close to chest wall. Now I'm taking Arimadex It was a long haul in 2013 but I've done everything recommended to prevent recurrence. Lord willing.
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I had a double mastectomy in September, I had no choice since I had it in both breasts and not a good candidate for tamoxifen. I have the same discomforts and real pain as Hindsfeet describes and it seems to be getting not better at all. My breastbone hurts and I feel like a thight belt is put right under my breasts. At night I have to sleep sitting up (since September ) if I try to lay a little bit flatter I wake up in pain. I don't dare to complain because I know I had 4 surgeries in 7 months and I need to be patient but I am scared that it will be like this for the rest of my life. I really am in pain every day.
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Lilysdaughter: Have you tried going to a specific pain management doctor or physical therapy? When I was having terrible joint pain while on Tamoxifen I went to Advanced Pain Management and they prescribed a pain ointment for my knees and back. I also did PT when I was having pain in my arm/chest after having radiation.
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hi bluewillowskys thank you for getting back to me. I did not try that yet according to my surgeon a lot of the pain is caused because I have no fat at all on my upperbody, just my ribs and skin,she would have preferred that the plastic surgeon would have implanted some of the grafting but he did not agree. I will definitely research this thank you.
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I posted elsewhere about what my BS told me about fat grafting today...she said its possible that cancer can be FED by getting fat grafts possibly so she suggested I not do that because im ER/PR positive. While searching for info on it i found a VERY interesting article about DCIS and mammograms.
http://mammogramsanddcis.blogspot.com/
This is definitely worth a read for every woman. I plan on getting an MRI now and not just a mammogram.
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Bluewillowskys thanks for sharing interesting article, just looked at your profile I have 3 kids too, I am ER/PR + too,in my case with double mastectomy you don't have mammograms anymore I see my breast surgeon every 3 months ( lifelong) and MRI once a year. I had a mammogram in May and they found calcifications in left breast, a follow up ultra sound did not reveal anything,the biopsy was DCIS and I had lumpectomy Just to be sure my surgeon wanted an MRI this revealed a perfect mirror image after biopsy was found a more aggressive DCIS on the right side that was June I had another lumpectomy as I still thought mastectomy was kind of drastic for DCIS In September when I had the double mastectomy they found more DCIS in the removed tissue. I am nervous because I am not on tamoxifen.
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bluewillowskys, the link you provided is a blog, not an article or a research study; in other words, it's just the personal opinion and anecdotal experience of one patient. And that particular blog has a lot of misinformation in it. It's not a reliable source at all.
The writer says: "Most of us don’t realize that mammograms read only through soft tissue,
which comprises the milk ducts; it does not see into them." Well then how does the mammogram show the calcifications that are in the duct?Would an MRI have detected her breast cancer sooner? Maybe or maybe not. MRIs appear to be better at 'seeing' high grade, comedo-type DCIS (the most aggressive DCIs) but they aren't particularly accurate in spotting less aggressive DCIS. Personally I think it's a good idea for anyone diagnosed with DCIS to have an MRI prior to surgery, to help the surgeon get as complete a picture as possible prior to operating. And certainly MRIs have proved to be valuable for women who have dense breast tissue. But mammograms have a role to play too, since they are the most effective at spotting the calcifications which can be a sign of DCIS.
In my case, an MRI was able to 'see' more of my aggressive DCIS than what was seen on the mammogram. And from having spent a lot of time on this board, I know of many other cases where MRIs have proven to be invaluable in providing a diagnosis that was missed by other screening methods. But I can think of at least as many situations - and probably many more - where MRIs have resulted in false positives, leading to unnecessary biopsies and unnecessary worry. So while it's certainly true that mammograms leave a lot to be desired, from my standpoint, so do MRIs.
Unfortunately at this point in time, there is no effective and fully accurate screening methodology for breast cancer (DCIS or invasive).
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no, nothing can be 100% fool proof but the fact that I should consider having an MRI never crossed my mind until I read this...i certainly think the option should have been offered to me and covered by insurance if I chose to do it.
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Bluewillows, I wasn't offered an MRI after having a mammogram that showed something suspicious. It was recommended that I have a follow-up mammo in 6 months. I wasn't satisfied with that and demanded am MRI. Funny thing is my MRI showed cancer in the other breast not the "suspicious" breast. The surgeon that I am now seeing said that she feels that every woman should have MRI's not just mammograms. Had I not demanded the MRI I still would not know that I am walking around with cancer in me. And now I am on the road of getting rid of it! So anything that makes someone aware of an MRI being an option is a good thing. I can't count how many people I have told "if they see something suspicious demand an MRI".
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Lumpectomy
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Hello all,
I'm new to this and just finding threads that apply to my situation. What wonderful sources of information you all are. I've been diagnosed with DCIS. I wasn't given the numerical detail many of you know, but she did say stage 0. I've been to two surgeons and have selected the one we will use. The suggestion is lumpectomy, radiation, tamoxefin. I have small breasts and understand that a lumpectomy will take out quite a chuck, so my husband and I are seeing a plastic surgeon on Tuesday to select the best course of action. If I do mastectomy, I do not have to do radiation. Can't sleep at night over this decision. I know we need to make ti next week and schedule surgery. Never thought I was that attached to my breasts until this. I'm feeling guilty about everything. Guilty that I'm being such a wimp about something that is curable and guilty that I'm even concerned about what my body looks like after this ordeal.
I've only read the first page of this thread. I've got lots more to read, but I thought I'd share my situation.
Thank you.
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KLJ...talked to my onco and she said i could stagger mammo with MRI...i just had mammo last week but really want and MRI NOW not 6 months from now. I emailed her office saying such but havent heard back yet.
motherofone....sorry you are now part of the group, but know we are here for you. You are NOT a wimp...even women with DCIS are warriors in pink ! we have difficult decisions to make too. If you are thinking of getting an implant you will want to skip the radiatin route...it a higher risk for complications to try putting in an implant after rads. My PS just told me that because of my rads after my lumpectomy for DCIS. Had i been told that prior to my lumpectomy i would have opted for MX instead....
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motherofone,
Sorry that you have to be here, but I'm glad that you've found us.
If you decide that you really would prefer to have a mastectomy, then go for it. But don't feel that you 'should' do it, or that it's a better treatment. It's not. If your doctors have told you that a lumpectomy + rads is available to you as a treatment option, then it is a reasonable option for you.
A mastectomy has lifelong implications. It's not something to do because you think you 'should'. And if you are considering having a MX mostly for cosmetic reasons - because of your concern that the appearance of your breast affected by the surgery - consider that a reconstructed breast has no natural feeling, and an implant reconstructed breast has no natural movement (although because the implant is behind the pec muscle, a reconstructed breast can have some pretty unnatural movements). Before you make a decision to have a MX for cosmetic reasons, take a look a pictures of reconstruction, and not just the perfect pictures that a plastic surgeon might show you.
Here are some pictures that are posted on breastcancer. org: Pictures of Breast Reconstruction
And here is another site with pictures: Breast Reconstruction Pictures
If you do decide that you want to have a mastectomy, do your
homework so that you know what to expect, and what the potential
problems might be. Hopefully things go well but you don't want to be surprised if you do encounter any of the common problems or side effects / after effects.0 -
Motherofone: I have noticed that quite a few women who opt for a lumpectomy have to have another surgery in order to get clear margins and some have to go on to have a mastectomy after two surgeries do not get clear margins. It may help you with your decision to ask the surgeon (also given that you said you have small breasts), how confident s/he is of getting clear margins based on the size of the area to be removed, location in the breast, etc. My breast surgeon believed that due to my small breasts and large area of DCIS, that a mx would be best and I still did not get clear margins (but this is very unusual). So I am having radiation. Having a mx is not a guarantee of no radiation. Your surgeon is obviously recommending a lumpectomy, so likely believes that there is a good chance of success with this choice, but it may help to have this discussion anyway. These decisions are overwhelming at this point, but as you gather more knowledge and ask more questions, hopefully the right decision for you will become apparent.
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TB90, that's a really good point. It's important to know, heading into a lumpectomy, that in about 20% of cases, clear margins aren't achieved with the first surgery. If that happens, a second surgery will be necessary, either a re-excision (another lumpectomy) or a MX. It's also important to know that rads might be recommended even after a MX, if the margins are close (and for those who have invasive cancer, for other reasons as well, such as the size of the area of invasive cancer and the number of positive nodes).
It's also important to know, in choosing between a lumpectomy and a MX, that a MX with reconstruction usually means at least 2 surgeries, and sometimes 3 or even 4. I believe that about 30% of reconstruction patients require revision surgery.
motherofone, do you have a copy of the mammogram report and the pathology report from the biopsy? Those reports will have important information about your cancer that can help you with your decision. Have the surgeons you've talked to given you an estimate of the size of the cancer? Do you know if you have DCIS in just one area (a single focus) or more than one area (multi-focal)? And have you had an MRI? After a diagnosis of DCIS, an MRI can help provide an estimate of the size of the area of DCIS - and this is a big factor in whether a lumpectomy is likely to result in clear margins.
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Bluewillowskys,
Don't take no for an answer! Keep after them!
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Motherofone....MOST important.....listen to yourself.....don't let people confuse YOU.....you have wonderful support....and that is YOUR husband...Liz
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Hi motherofone!
I am in the same joy-filled boat as you
DCIS, small breasted (barely an A even now!) with a lumpectomy scheduled for March 3. My BS said that if they can't get clear margins the first time, I would only be "eligible" for one more try, just b/c there isn't that much breast tissue to take.My BS said that in her experience, only 1 in 10 need to go back for a second surgery so I am hoping that i am in the 9 that does not. I wish I knew (maybe I don't!!!LOL) how much of a lump they are going to take. She mentioned that I could see a PS afterward but also said that prob only hubby and I would see any difference.
Sometimes it is so hard to do, but I know all that I *can* do is take a deep breath and keep on going fwd.
good luck to you!
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KLJ: i got a response back the next day and they are setting up the MRI around March 10th. YAY !!! a doctor that finally listened to MY concerns. She's a keeper !
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Bluewillow, I am so glad you found someone to listen to you! She is a definite keeper! Keep me posted with your results!
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Hi,
I had my mam and stereotactic biopsy and met with my BC doc and she immediately wanted an MRI. It confirmed that I needed to have a mas. Instead of a lump.
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Thank you all of you who responded. Today we met with a plastic surgeon. I cried in the appointment and the whole way home. I feel even more confused. There is no crystal clear option. There are negatives to each one! I feel exceptionally thankful that my prognosis is good, but the worries are overwhelming me!
I do not have a copy of my pathology report but the surgeon said it was a small area at about 1:00. 2 1/2 - 3 cm? I was told that if I went the mastectomy route there would not be a need for radiation. The plastic surgeon said I was a candidate for nipple sparing surgery.
I would just go for the lumpectomy, but I hate the idea of radiation. I need to read more about radiation and the problems associated with it.
There is no one shot, easy answer to this. Everything has a con to it, some more than others. I have never felt so lost as to what to do! You all have such valuable information. That is what I need. More information to make my decision. Each and every thing you share is greatly appreciated!
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motherofone, I was completely set to go with a lx because the size of my tumor was only 6mm. Would need radiation after that. Well, after one visit to the radiologist it was determined that I wasn't a candidate for radiation because of the location of the tumor. I have had a heart ablation and the tumor is right up against my chest wall. Have you consulted a radiologist yet? May change the course of everything.
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I am in a similar situation motherofone and I really feel for you. I opted for the lumpectomy with radiation because I couldn't face having a mastectomy, although I am concerned about radiation. Well, three lumpectomies later it looks like I may end up with a mastectomy. Next week I go for a second opinion and will take it from there. This is such a difficult decision to make.....when my doctors told me two weeks ago that they recommended a MX at this point, I completely fell apart. I decided to have the third lumpectomy in hopes of saving my breast, but found out today that one margin was only 2 mm. I am starting to accept that a MX is probably my best choice and I would get to avoid radiation. I guess my only advice to you is that it takes time to process all of this. There are so many feelings to sort through and it is difficult to make such a big decision when you are really scared. Maybe you can take more time to make your decision?
If you do opt for the LX/radiation route, there are many things you can do to support your body through radiation to help minimize the adverse effects. That knowledge helped me feel less scared about having radiation. I am seeing a naturopath who recommends IV vitamin C and glutathione. Other recommendations for specific supplements can be found here:
http://www.lef.org/protocols/cancer/radiation_therapy_01.htm
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Thank you everyone for so very many kind, sensitive responses. I've zipped from emotion to emotion - plan to plan with lightning speed. Spoke with ladies with experience as well as a psychologist who works only with cancer patients. After leaving the psychologist, I knew what I was going to do. Since that time, I've been able to sleep, eat, and talk without crying. I've decided to do the Lumpectomy. That is what 2 surgeons have recommended. It was me, with my fears of what the future will bring that had me jumping to Mastectomy. My surgeon said, she was pleased that I have made the decision to do just the lumpectomy. I am now resolved. I will be doing radiation too, so I will be desperately researching that next. I appreciate the information on nutrition and will do what is recommended. My surgery is schedule March 13. Hope it is lucky for me. How long have you all taken off for lumpectomy. I have lots of sick days. I'm an elementary teacher and am quite active. I plan to take at least a week to avoid being jostled and lifting. Heck, my bookbag is more than 10 pounds!
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My first DCIS was 20 years ago. I was 42 and couldn't even think of having a mx. I had a lumpectomy (2X to get better margins) & 6 weeks of radiation. Neither was bad at all. 17 years later DCIS on the other side. No big deal, I had been thru it before it was relatively easy & hadn't returned (to the same breast) so I had lumpectomy & radiation again. Once again neither was bad. My breast weren't perfect but weren't bad. 2 years later DCIS returned to the left breast (the most recent). I had no choice but to have a mx since I couldn't have radiation a second time in the same breast.
I did choose to have a bmx. After 3 times I was done. I am 5 weeks out & have TEs. My experience with a bmx is that it is way harder then lumpectomy & radiation, both physically & mentally.
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bump FYI Bessie's comments
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I believe I am writing this more for myself but also to weigh in on choices one has to make for themselves.
Yes, it is a personal choice and taking in all the information the doctors tell you is sometimes overwhelming. I am or was very small breasted (30AA) with dense breast tissue. I had a follow up mammogram November 2013 which showed some growth in an area of micro calcs. I scheduled a biopsy for Jan 2014. It had to be done in the hospital with another mammogram to place the needles for the area of incision. Most painful! My pathology report came back positive for DCIS. My initial BS first said lumpectomy followed by tamoxifen. Had an MRI and a follow up mammogram after biopsy. She then had me see a radiologist. Radiologist told me I needed radiation. Went back to BS with husband as she was going to take more of the DCIS out. Got to appointment and she wasn't even sure what she was scheduled to do with me. At that time she also told me I of course needed radiation and had always said so. I called her on it and she told me I was confused. Every time I spoke to her, I felt she really did not have a clue to whether I was patient A or B. My husband was not impressed either. I needed a new doctor!
I found her! She explained my mammogram had 4 other areas of micro calcs. These were all in different areas. She was unsure of clean margins and I most likely would need further lumpectomies. I was not a fan of radiation nor tamoxifen. Neither which I would need after a mastectomy. She also told me I was a candidate for NSMX. I felt very grateful as I knew it could have been even worse. I realize a mastectomy may be too aggressive to some but for me it seemed the right choice. My husband has been SO supportive as well as my children (23 & 20 yr olds). My journey through reconstruction is in the beginning phases. My BS organizes a support group every 2nd Thursday of the month.
It's a personal choice as it has been said. And each choice should be respected as we are all different. An informative choice is a smart choice.
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