Lumpectomy Lounge....let's talk!
Comments
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In my second pt session this week she had me start massaging my scars (Im 6 weeks out now from bmx). She got approval from my ps to do it. Its kind of freaky but continued massage over the course of my expansions she says will cause the scars to flatten and become more pliable, and make expansions easier as well. I asked about bio oil etc and she said (at least in my case) my skin has natural oils and there is no need for anything more. She said if I did use any lotion or anything to avoid ones with fragrances as they would tend to have more alcohol content.0 -
Hi all,
I have been sick for awhile, so have gotten very behind in reading these boards! Just over a week and I have missed out on so much. I spent several days in bed, and even though back to "normal" schedule, I still feel so utterly exhausted in the evenings I am too tired to think straight. Don't know if I am still just run down from being sick, or maybe rads fatigue has kicked in. I hope it's not the latter, because I still have a long ways to go on that front!
Anyway, Sorry to those of you to whom I may not have replied back, or those who gave me some advice, if I never thanked you. I was just too exhausted to get back online, but was thinking of you all the whole time
Summergal, my SBBC twin, thanks for missing me! I kept thinking that by the time I joined back in these boards, I would feel like a stranger again. Thank you for making me not feel so. I am so glad to hear you finally got things settled with your appointments, and hope you will not be left out of the loop again.
Bounce, I know you have probably heard this a hundred times already, but I finally read your post from 9/30 the other night and I bawled my eyes out! You are the first person I have ever heard sum things up quite like you did. The first person who ever treated their breast with tenderness and compassion, instead of thinking of it as being "bad". It really made me change the way I think about my poor old besten, battered breasts now too. You have really touched us all with your words and wisdom.
PatAlameda, so glad to see you again, but sorry to hear your infection once again reared it's ugly head!
Canuck, I will talk to you over in Fall RADS land. I have a lot more to say, but this post is slready getting too long!
Welcome to any newcomers, sorry to those of you going through work woes, and family woes, or to those who feel they are lacking support. This is a wonderful place to get your support. Hang in there, and happy weekend to all!0 -
Hi,
I started taking Tamoxifen on Sept 27th. Took all I could do to put that tablet in my mouth. I read the side effects and that was enough to want me to run for the hills, but at the same time I know that it will decrease my chance of this monster returing.
How long did it take for you to feel side effects. I take the Tamoxifen a bit before I go to bed I can not go to sleep and when I do I wake up hot, so I uncover, then I am cold , so I cover back up then hot again.. GRRRRR , This has been happening for a few days now and I am in need of sleep!! I also noticed my breast pain has increased the last couple days. On inspection of the girl I dont see any red spots or new hard spots. I just need sleep!0 -
Hi Lumpies!
L2grl - we've missed you. Hope you are feeling better soon and regain your energy. Hydration was key for me during and after rads. Plus the twins need you to take good care of yourself...hydrate, rest, exercise, and just pamper yourself. You've got this brave warrior
Ndgrrl - ugh:( no sleep night sweats hot cold leg in&out
(( I take HT at lunchtime...seems best for me. I also determined not to read all the SEs because they are scary...so gulp down and pound my bones with attitude. Journal for a week your SEs than call your MO to discuss options. May give you something to help with sleep as your body adjusts or another generic or nongeneric. No sleep Added to that breast pain ugh! Are you overusing your right side or sleeping on her? Ugh this new normal. Any pain meds left to ease you into slumber...or medicinal ###:).
Aviva - PT massage for scar tissue...your team is on top of it...I just started & hope to soften her up for mammo in Nov. Interesting the pattern of massage and how firm compared to my light caress...just more confident and purposeful. Think in the beginning I was too overwhelmed and afraid and protected her so...now I'm more comfortable...we've been through a lot me and my girl!
How are our laser tag warriors? No more alarms and lights and bells! Hang in there...healing light.
And our chemo land Lumpies? Remember we are in your pockets!
After 3 bids to paint our home we decided to pay ourselves to paint...ha! I've got more paint on me than the walls (10')...visual...wearing inside out...my hubby's boxer shorts, old ratty golf shirt, a bandana, knee pads, ugly old sketchers and now a beautiful shade of flat wall paint called natural lol! I get all the low on your knees cut in stuff then roller time! Bamboo floors next...($$$why we are painting) this fixer may get fixed this year after all! The past 3 yrs cancer (his/hers) has knocked us around and our gut job has stalled...this Phoenix is rising out off the ashes...Break time...munch my carrots enough rambling back to finger painting!
(((Hugs)))
Cindy0 -
Having read about it on these boards I wasnt surprised when she started but as I couldnt see what she was doing I was imagining the incisions popping open and blood gushing everywhere as she massaged up and down the 6 week scar/incisions. Of course, they are closed but not scarred over, but it was kind of panicky in a funny way inside. We are so cautious with our bodies when someone starts to be more intense its panic time!0 -
Hi all,
I had a lumpectomy on Aug 19 . Today I was inspecting my incision and noticed a stitch on the end. I was sewen - inside out- and this is a stitch on the very end. I wonder if I can just clip that, or will it disolve? I thought it at first was a scab, but nope, it won't leave.
Also under my incision is very very hard and has been causing me some pain, it is not red or hot. Is this normal?
Thanks all for all the help, you have been sooo helpful in all this.:)0 -
I had stitches poking out of both incisions and I just left them - even though the one under my arm bothered me a bit.
At about week 5 after surgery they disappeared.
I am at week 6 after surgery now and I too have been wondering about my armpit incision. It is very bumpy - not flat like the breast incision and unless I keep doing stretching exercises 3 times or so during the day it gets tight and uncomfortable.
Someone said they were massaging the scar. How do you do it?0 -
When I saw my radiologist Onc on Sept 26 he told me to wait another month and then just get some vitamin E oil or some lotion and just softly massage the incision. He said at the time because of internal rads that I was not healed enough to massage. I was wondering more about "how" myself.
I hope that my stitch also goes away on its own.
My incision in my arm pitt is also quite puckered and I have to be careful when shaving my arm pitt. I will be going back to the lympodemia clinic next week and hoping she will show me some massages and comment on my incision as my arm pitt area is very swollen yet , She took measurements of my arm last week and we are waiting to see if I get worse or better this week. If I am worse I get to have a compression sleeve put on.0 -
Received a call this morning saying that my date for re-excision has been moved. Instead of it being in November, it has moved to October 29th. I am kind of nervous about it and hope it won't be as big of a deal as the first procedure.
Wishing everyone a good Monday.0 -
hobbesla4- Had a re-excision and SNB on 8-20 and other then 2 annoying areas to take care of and going thru not lifting over 5 lbs etc. etc. it went well. The waiting for path. reports still sucks!! Wishing you an easy time. Hugs, M0 -
Am going to Pink Power Night tonight, sponsored by our local cancer center. 700 survivors, family and friends gather together for exhibits, a meal, inspirational speaker and a panel of our local CA docs talking about the latest (have to admit, when the surgeon's nurse handed me the "Big Bag O'Pink Stuff" on diagnosis day, I was so overwhelmed that I put it in the trunk and didn't look at it for a few days. I felt like sometimes the "pink" thing gets to be a bit much...especially this month, as it now takes on a whole new meaning for me. I was in Lowe's shopping for a toilet seat the other day and the pink ribbons were EVERYWHERE!). Anyhoo, I am looking forward to this tonight and even bought a cute little light pink dress to wear to it
l2girl - SO glad to "see" you again! Sorry you were so sick. I'm sure your body needed the downtime, but what a way to have to get it!
ndgrrl - I also had a stitch sticking out of the ends of both SNB incisions - at first (around 1 1/2 weeks), they were very sharp and poked into my underarm skin but now (at 3 1/2 weeks) they are starting to soften and I don't notice them at all. I also have a big hard spot under my right breast incision. It causes me a lot of discomfort. My left breast incision seems fine, a little toughness under it, but very little discomfort at all. Others on this board have said that the discomfort does start to fade as they get further away from their surgery dates, but as Tom Petty once sang, "The waiting is the hardest part."0 -
Hi Beautiful Lumpy Ladies. I have been away for a long weekend but I am catching up as fast as I can.
ndgrrl- You dance that happy dance young ladies. Yahoo!
RMlulu- Your posts are so positive and uplifting. Thank you thank you.
Bounce- I can't believe what you have had to endure thus far! Sheer craziness. I am sending prayers your way for smooth sailing.
Summergal- Regarding nipple soreness, I developed that midway through radiation and was given Mepilex by my RO nurse to cover my nipple. Ask if they have some in the office and can give it to you. I don't know if it is over the counter and where you would buy it. It has been a godsend. Canuck's suggestion about messaging the incisions is a really good one; my surgeon suggested that to me.
I'm not big on the "pink thing" but was touched when a male flight attendant was wearing a pink tie and pocket hanky. He stopped by to charge me for my adult beverage and I thanked him for supporting the cause. Not that I expected it but my beverage purchase was free as was my sister's. He told me he bought ties, etc. for his co-workers as well. Nice gesture.
Have a good day Ladies.0 -
Hi Fephna
Sorry about the late reply but does having your ovaries out mean you can do away with Tamoxifen or other such drugs?
I seem to remember reading a few posts by women who had total hysterectomies years before and still developed ER+ cancer.
Don't other glands also produce ER? Not as much as ovaries but a bit?0 -
Summergirl that does sound like fun. I wished I lived in a bigger area that did things like that. We do have "Relay for Life" every Summer.
hobbesla4, good luck. Waiting is horrible in all this. My sister will be having hers next Thurday.
RMlulu, Thank for for sharing your journey and encouraging all of us even as you struggle with your own battles. I always enjoy your posts.
Cakes- TY for celebrating with me
Thank you everyone for this board. If it were not for you, I am sure I would be sitting here floundering in a sea of pink books the breast center gave me and as I am finding out they basically all say the same thing and nothing says what I want to know at the time.0 -
Yes, your body still produces some estrogen even after hysterectomy, especially if you are like me and have a little (or a lot) of extra weight. If you search this site for estrogen you can find more information about the process. I had a hysterectomy for endometrial cancer and still developed Er+ breast cancer.0 -
Some of you may have seen other question I've posted about my whole strange situation going on, but to make a long story short Lumpectomy in July (was a benign lymph node) then 12 weeks later my breast surgeon did a skin biopsy because I have thick skin swelling and redness quite a few inches lower on the same breast that won't go away after surgery (even with antibiotics.) Now I'm really swollen, in pain, healing, and left waiting on results to rule out IBC. So worried and stressed, anyone else have this thickened painful skin after biopsy, lymph node removal, or lumpectomy?0 -
Hi everyone. I am scheduled for a lumpectomy Oct. 21st and worried that I am making the wrong decision. My tumor is 7 mm, grade 2 and the receptors are est/pr + and her2- .. so some of that is good.. grade 2 not so much. All the doctors on my team recommend a lumpectomy, but I wonder if I should go for a mastectomy. Radiation scares the heck out of me...always has. I have had so many dental x-rays over my lifetime, I won't even let my dentist do bitewings...and here I am facing huge amounts of radiation? To say I am scared is an understatement!
My question to all of you is this .. do you ever second guess yourself and wonder if you should have done a mastectomy? How did you decide to do the lumpectomy? I know this is a personal choice and I have to do what is 'right for me'...but I don't know what is right for me! I am the worrying type and I'm not sure I can face all those mammograms or the thought that it will come back.
One day I am settled on the lumpectomy...the next the mastectomy. I'm about to lose my mind..or maybe I've already lost it! I just seriously want to run away and hide somewhere.0 -
PRB1956 - I think it's normal to second guess yourself; it just means you are not at peace yet with your decision. Maybe a second opinion from another surgeon will help you to know what is right for you. Have you discussed your feelings about radiation with your doctors? Maybe the reality of it is not so bad. Also, consider this: you can always have a mastectomy after the lumpectomy, but not the other way around. In other words, if you do the mastectomy and later regret it, it can't be undone.
One thing that struck me is that when there is a local recurrence after mastectomy, it is often on the chest wall, which can be much more serious than a recurrence in breast tissue after a lumpectomy. It is a very difficult decision to make and there are a lot of factors to weigh. Wishing you peace and strength.0 -
PRB1956 - lane4 has given you excellent advise. I had also been told by my oncologist about the local recurrence after a mx is often on the chest wall. That along with other statistics helped me make my decision. You need to be comfortable with your decision because it is your body. Go with your intuition and don't second guess yourself. I'll be praying for you.0 -
PBR 1956 - I was EXACTLY in your shoes a month or so ago. Had made my decision to do Bilateral LXs based on my second-opinion surgeon walking confidently into the exam room and telling me I was still a good candidate for breast preservation. Despite that, I was still worried until, no kidding, the morning of surgery in the pre-op room that I'd made the wrong choice. It is incredibly difficult to make this decision, but I agree with what lane4 said, that you can always do a lumpectomy first and then do a mastectomy later. I know it's not as easy as that, though. There is a great list put together by a forum member called Beesie. It goes through many things to consider when choosing between LX and MX. I have private messaged Beesie to see if she would come to this forum and re-post her list here for you. I think it might help...and it will probably also raise a lot of questions for you. As for radiation, I don't even like to use the microwave oven!! So I totally get where you are with that, too. But, I will tell you that last night I went to a Pink Power Night and there were 700 women there (survivors and supporters) and one of the speakers is several years out from her cancer treatment and she talked about having had radiation. And all I could think was, there is a vibrant, beautiful, healthy-looking woman and she had radiation. And there are many, many others. I still worry nearly every day that I made the wrong choice, especially when I read the profiles of women on these boards who had the same diagnosis as me, or even smaller tumors, and they chose mastectomies. I wonder, "what don't I know that they do?" I hate that because of cancer, we are faced with the decision between two really rotten choices. But, I am almost a month out from my lumpectomies and I'm feel okay, and am starting to actually believe that my cancer is not a death sentence. I'm really glad you came to this discussion board. I think you will find a lot of support and caring from the community here. As one of the gals likes to write, "we've got you in our pockets." Hang in there. And look for Beesie's list.0 -
PBR1956 - I wanted to add, one of the docs on my team said this, "Why do more surgery for less cancer?" That gave me a lot to think about. Based on your description of your tumors, I had a very similar diagnosis, as you can see from my profile below: ER/PR+ and Her2/Neu neg, grade 2, 6mm in the left breast and two in the right that amounted to 1.8 cm of tumor. Had lumpectomies on both breasts at the same time, with sentinel node biopsies under both arms...and nearly a month later am mostly recovered with a four-inch c-shaped scar on the right breast and a two-inch straight scar on the left. Am now waiting for the results of my onchotype dx test to determine if I need chemo (my nodes were clear) and if not, will start radiation in mid-November. I haven't read much about radiation. But I'm trying to trust my doctors. And, yes, that is hard. One other thing - there may be an October Surgery thread started on one of the discussion boards, and if not, I suggest you start one! I was on the September Surgery thread and it was so helpful to have so many other women going through many of the same things at the same time. We really supported one another as we moved toward our surgery dates. You will get through this and come out on the other side. ((((HUGS))).0 -
PRB1956 - From my biopsy results I was told I would need to have a lumpectomy and radiation. and take anti hormonal medicine for at least 5 years. I said I would rather have a double mastectomy and no radiation and no Tamoxifen thanks.
The breast surgeon and the medical oncologist both assured me I would have a higher chance of survival if I did the lumpectomy/radiation/Tamoxifen!
I think wanting to have a mastectomy is a natural stage that many women go through - let me correct myself and change that to "feeling the need to" rather than "wanting to" - its a huge difference.
Both doctors also assured me that having a mastectomy wouldn't spare me from doing radiation or guarantee that cancer would not reoccur in the chest wall or migrate somewhere else. That was very shocking news to me.
(I believe some women who live very far from medical centers where radiation is done "choose" mastectomy over lumpectomy.)
After my lumpectomy I was very glad I hadn't been given the choice. I feel I went through a stage where I just wanted to do anything to be rid of cancer as quickly as possible. Now I am glad I got to keep my poor saggy, bruised and battered breast and her less saggy not bruised or battered sister.
I think what is important is what many ladies have said already - find a breast surgeon who does many lumpectomies - not a general surgeon and not just breast surgery - but the type of surgery that you will be having. Also make sure you can have the Sentinel Node Biopsied at the same time as the lumpectomy. Also make sure your facility has a lab pathologist working at the time of the operation so they can check the Sentinel node and the margins while you are out. That will save you having more than one procedure - which is a huge help both to the body and to the mind. It also saves having healthy lymph nodes removed as the surgeon will only go ahead and remove more lymph nodes if the sentinel one is affected.
By the way my Medical oncologist said it wasn't so terrible that the tumor was Grade 2. Hopefully she is right.
Did your doctor give you a choice between lumpectomy / mastectomy? If so ask him/her to explain the pros and cons of each.
That will help you to make a decision based on medical knowledge at the present time rather than an emotional decision made during a period of intense fear and turmoil.
Don't feel bad to ask for more time from your doctor. You are entitled to it to make this major decision.
Take a few deep breaths. Everything is going to be OK whichever way you choose.
Hugs0 -
Bounce - whenever I get that bee buzzing in my ear worrying me that I've made the wrong decision, you pop up and write an eloquent, informative, wonderful post like the one above. And it makes me feel better. And it makes me know that there are people out there just like me. Thank you.0 -
I, too, want to echo what Bounce said about finding a Breast Cancer surgeon (surgical oncologist) who does hundreds of lumpectomies, and not just biopsies, per year. This is really important. I had a choice between my local general surgeon, who I really liked, who did my original stereotactic biopsy and guided me in the early stages of my diagnosis...and a breast cancer surgeon an hour and a half away who I barely knew but who does nothing but breast cancer surgery. This was critical to me in my decision-making. I wanted someone who had so much experience that he knew exactly where to cut to get the tumors out. That's not to say that there wasn't the possibility of bad margins after the surgery, but as my husband said, "If you have the general surgeon do the LX, and you don't get clear margins, you'll always wonder if the breast cancer surgeon at the cancer center would have done a better job. But if the experienced bc surgeon didn't get clear margins, you'd never wonder if the general surgeon could have done a better job." Again, that's not to disparage anyone who had their surgery with a general surgeon, there are many who sub-specialize in breast surgery and are very good at what they do. And many women don't live near enough to a cancer center to have access to a BC surgeon. But that's one of the considerations that affected my choice - the level and quantity of the surgeon's experience in lumpectomies. Don't be afraid to ask questions like, "How many lumpectomies do you do in a year?" "How many times do your patients have to go back for re-excisions?" "On what criteria relative to my case are you basing your recommendation for lumpectomy?" These are legitimate questions and you have the right to answers. Also, any good surgeon will support you in seeking a second opinion, and with your diagnostic characteristics (small tumor, low grade, hormone receptor pos and her 2 neg), you do have some time to make a really informed decision and yes, you CAN request a different, later surgery date in order to get the answers you need. We're here for you.0 -
Here's the post by Beesie, one of our experts wrote on a thread awhile ago. She lays out a very balanced view. It's lengthy, but very informational.
Beesie wrote:
Some time ago I put together a list of considerations for someone who was making the surgical choice between a lumpectomy, mastectomy and bilateral mastectomy. I've posted this many times now and have continued to refine it and add to it, thanks to great input from many others. Some women have gone through the list and decided to have a lumpectomy, others have chosen a single mastectomy and others have opted for a bilateral mastectomy. So the purpose is simply to help women figure out what's right for them - both in the short term but more importantly, over the long term.
Before getting to that list, here is some research that compares long-term recurrence and survival results. What the research has consistently shown is that long-term survival is the same regardless of the type of surgery one has. This is largely because it's not the breast cancer in the breast that affects survival, but it's the breast cancer that's left the breast that is the concern. The risk is that some BC might have moved beyond the breast prior to surgery. So the type of surgery one has, whether it's a lumpectomy or a MX or a BMX, doesn't affect survival rates. Here are a few studies that compare the different surgical approaches:
No Survival Benefit For Mastectomy Over Lumpectomy
Now, on to my list of the considerations:- Do you want to avoid radiation? If your cancer isn't near the chest wall and if your nodes are clear, then it may be possible to avoid radiation if you have a mastectomy. This is a big selling point for many women who choose to have mastectomies. However you should be aware that there is no guarantee that radiation may not be necessary even if you have a mastectomy, if some cancer cells are found near the chest wall, or if the area of invasive cancer is very large and/or if it turns out that you are node positive (particularly several nodes).
- Do you want to avoid hormone therapy (Tamoxifen or an AI) or Herceptin or chemo? It is very important to understand that if it's believed necessary or beneficial for you to have chemo or take hormone therapy, it won't make any difference if you have a lumpectomy or a mastectomy or a bilateral mastectomy. (Note that the exception is women with DCIS or possibly very early Stage I invasive cancer, who may be able to avoid Tamoxifen by having a mastectomy or a BMX.)
- Does the length of the surgery and the length of the recovery period matter to you? For most women, a lumpectomy is a relatively easy surgery and recovery. After a lumpectomy, radiation usually is given for 6 weeks. A mastectomy is a longer, more complex surgery and the recovery period is longer.
- How will you deal with the side effects from Rads? For most patients the side effects of rads are not as difficult as they expected, but most women do experience some side effects. You should be prepared for some temporary discomfort, fatigue and skin irritation, particularly towards the end of your rads cycle. Most side effects go away a few weeks after treatment ends but if you have other health problems, particularly heart or lung problems, you may be at risk for more serious side effects. This can be an important consideration and should be discussed with your doctor.
- Do you plan to have reconstruction if you have a MX or BMX? If so, be aware that reconstruction, even "immediate" reconstruction, is usually a long process - many months - and most often requires more than one surgery. Some women have little discomfort during the reconstruction process but other women find the process to be very difficult - there is no way to know until you are going through it.
- If you have a MX or BMX, how will you deal with possible complications with reconstruction? Some lucky women breeze through reconstruction but unfortunately, many have complications. These may be short-term and/or fixable or they may be long-term and difficult to fix. Common problems include ripples and indentations and unevenness. You may have lingering side effects (muscle pain, spasms, itching, etc.) on one side or both (if you have a BMX). If you don't end up with symmetry (symmetry is not a sure thing by any means, even if you have a bilateral mastectomy with reconstruction done on both sides at the same time), will you regret the decision to remove your breasts or your healthy breast? Are you prepared for the possibility of revision surgery?
- How you do feel about your body image and how will this be affected by a mastectomy or BMX? A reconstructed breast is not the same as a real breast. Some women love their reconstructed breasts while some women hate them. Most probably fall in-between. Reconstructed breasts usually looks fine in clothing but may not appear natural when naked. They may not feel natural or move naturally, particularly if you have implant reconstruction. If you do choose to have a MX or BMX, one option that will help you get a more natural appearance is a nipple sparing mastectomy (NSM). Not all breast surgeons are trained to do NSMs so your surgeon might not present this option to you. Ask your surgeon about it if you are interested and if he/she doesn't do nipple sparing mastectomies, it may be worth the effort to find a surgeon who does do NSMs in order to see if this option is available for you (your area of cancer can't be right up near the nipple).
- If you have a MX or BMX, how do you feel about losing the natural feeling in your breast(s) and your nipple(s)? Are your nipples important to you sexually? A MX or BMX will change your body for the rest of your life and you have to be prepared for that. Keep in mind as well that even if you have a nipple sparing mastectomy, except in rare cases (and except with a new untested reconstruction procedure) the most feeling that can be retained in your nipples is about 20% - the nerves that affect 80% of nipple sensation are by necessity cut during the surgery and cannot be reconnected. Any breast/nipple feeling you regain will be surface feeling only (or phantom sensations, which are actually quite common and feel very real); there will be no feeling inside your breast, instead your breast will feel numb. For some, loss of breast/nipple sensation is a small price to pay; for others, it has a huge impact on their lives.
- If you have a MX or BMX, how will you deal emotionally with the loss of your breast(s)? Some women are glad that their breast(s) is gone because it was the source of the cancer, but others become angry that cancer forced them to lose their breast(s). How do you think you will feel? Don't just consider how you feel now, as you are facing the breast cancer diagnosis, but try to think about how you will feel in a year and in a few years, once this diagnosis, and the fear, is well behind you.
- If you have a lumpectomy, how will you deal emotionally with your 6 month or annual mammos and/or MRIs? For the first year or two after diagnosis, most women get very stressed when they have to go for their screenings. The good news is that usually this fear fades over time. However some women choose to have a BMX in order to avoid the anxiety of these checks.
- Will removal of your breast(s) help you move on from having had cancer or will it hamper your ability to move on? Will you feel that the cancer is gone because your breast(s) is gone? Or will the loss of your breast(s) be a constant reminder that you had breast cancer?
- Appearance issues aside, before making this decision you should find out what your doctors estimate your recurrence risk will be if you have a lumpectomy and radiation. Is this risk level one that you can live with or one that scares you? Will you live in constant fear or will you be comfortable that you've reduced your risk sufficiently and not worry except when you have your 6 month or annual screenings? If you'll always worry, then having a mastectomy might be a better option; many women get peace of mind by having a mastectomy. But keep in mind that over time the fear will fade, and that a MX or BMX does not mean that you no longer need checks - although the risk is low, you can still be diagnosed with BC or a recurrence even after a MX or BMX. Be aware too that while a mastectomy may significantly reduce your local (in the breast area) recurrence risk, it has no impact whatsoever on your risk of distant recurrence (i.e. mets).
- Do you know your risk to get BC in your other (the non-cancer) breast? Is this a risk level that scares you? Or is this a risk level that you can live with? Keep in mind that breast cancer very rarely recurs in the contralateral breast so your current diagnosis doesn't impact your other breast. However, anyone who's been diagnosed with BC one time is at higher risk to be diagnosed again with a new primary breast cancer (i.e. a cancer unrelated to the original diagnosis) and this may be compounded if you have other risk factors. Find out your risk level from your oncologist. When you talk to your oncologist, determine if BRCA genetic testing might be appropriate for you based on your family history of cancer and/or your age and/or your ethnicity (those of Ashkenazi Jewish descent are at higher risk). Those who are BRCA positive are very high risk to get BC and for many women, a positive BRCA test result is a compelling reason to have a bilateral mastectomy. On the other hand, for many women a negative BRCA test result helps with the decision to have a lumpectomy or single mastectomy rather than a bilateral. Talk to your oncologist. Don't assume that you know what your risk is; you may be surprised to find that it's much higher than you think, or much lower than you think (my risk was much less than I would ever have thought).
- How will you feel if you have a lumpectomy or UMX and at some point in the future (maybe in 2 years or maybe in 30 years) you get BC again, either a recurrence in the same breast or a new BC in either breast? Will you regret your decision and wish that you'd had a bilateral mastectomy? Or will you be grateful for the extra time that you had with your breasts, knowing that you made the best decision at the time with the information that you had?
- How will you feel if you have a bilateral mastectomy and no cancer or high risk conditions are found in the other breast? Will you question (either immediately or years in the future) why you made the decision to have the bilateral? Or will you be satisfied that you made the best decision with the information you had?
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Summergal - In regards to the nipple pain, I had that too for a few weeks after my lumpectomy. I am 4 weeks out now and it is finally fading. I asked the surgeon about it and she said that the breast has very few nerves except for in the nipple. So, when the breasts are healing, the sensation culminates there. I really did not like that feeling - felt like a sunburned nipple!
Dawn0 -
PRB1956 - I just thought of something!
You may have to take into account your family history or lack thereof hopefully - of breast cancer.
Mastectomy might be something to think about more if you have a strong family history of breast cancer and/or if you are BRCA 1 or BRCA 2 positive. Ask your doctor about genetic testing and to explain the implications. I have a strong family history but am BRCA 1&2 negative and as I said the doctor saw no reason to have a more major surgery.
Summergal is right - if your surgery is delayed for a short while for you to get these answers - its ok as far as we have been told.0 -
RMlulu sounds like you had a fun weekend painting! No lights and bells so far this week but X-ray wasn't working today. Still had treatment but not my 10th tx X-ray and measurements. Tech said as long as its done this week it will be ok. I have no choice to trust what they say.
Hi L2girl glad your feeling better!
Bounce, yes the body still produces estrogen but most of it comes from the ovaries. I will still have to take arimidex for the next 10 years.
I'm 9 weeks post surgery and now my snb all of a sudden has a white pointy stitch sticking out. I showed my ro yest and she said even tho my nodes aren't getting rads somehow it made the stitch poke thru. I see my ps tomm and ro said not to touch it. Leave it and if after rads it's still there ps or bs can remove it. And tx # 10. I'm a nice shade of dark pink and skin has orange peel look. I kinda freaked this weekend. First thought was IBC but ro reassured me its a reaction to rads. So aquaphor 2 times a day. See how it looks next week when I see her again.
Summergal hope your pink party was fun!
I hope I didn't miss answering anyone. I have been in such a funk since I noticed my skin changes and the worry of it possibly being more cancer. Still letting in sink in ro said it was ok.0 -
PBR1956 - adding my 2 cents worth... Please remember that although it may look like we all have the same or similar dxs each one of us is different and that ultimately helps to determine decision making on lx vs mx. i.e. my BS suggested lx for ME ( based on my info) because of initial dx of dcis stage 0 grade 3 less then 1 cm. After 2nd lx it was idc stage 1a grade 3 but still under 1 cm. Based on size of tumor, my age (post menopausal) and 95% ER+ HER2- and 0 lymph node involvement I was an excellent candidate for lx. Statistically the difference (in my case) between re-occurance between lx and mx was very minimal. Please ask as many questions of your BS as you need to and seek a 2nd or 3rd opinion if you that's what you need to help with your decision.
Beesie bless you for such a comprehensive list - and solid data to consider. You are awesome!!!
Ultimately we all have to trust our own instincts on what we feel will be best for us - believe in yourself and remember there really is no right or wrong. No one can predict what our future will be. Hugs to you. M0 -
PRB1956- The other ladies on this forum have given you great advice! I wish I had ran into Beesie's list when I was worrying and stressing about having a lumpectomy. My surgeon gave me so many options and said if I wanted to look like an 18 yr old again, here was my chance. I told him 18 yr old? the rest of me sure would not match!! He did say I was a good candidate for lympectomy because of the size of my tumor. I came in with a strong history of BC and found mine with my very first mammogram. My sister has since been dianosed with BC so 5 of us total this year. I am Braca negative though.
To me it was a personal choice but like others have said, I felt if my bc would come back then I could do a masectomy at that time. I wanted to keep my girl for as long as I can as long as the doctors agreed it was the best thing.
I was bummed when I heard I was grade two as well but thenI was told Grade 2 was not a bad thing. I was told that grade 2 is more active cancer than grade 1 so easier to treat.
I didn't have a whole lot of choices in surgeons = I am from a small area- I did choose the one who was the lead for the breast center though he does other surgeries as well. I felt comfortable enough with him and asked around and found others who liked him.
I had internal radiation, It was 5 days- twice a day and then I am done. It takes a bit longer for the breast to heal after it and there are a few side effects like any radiation but all in all I have been happy with it.
My Radiologist Onchologist as well as my surgeon both assured me that having radiation and a lympectomy were just as effetive as a masetomy, but they did leave the final decision to me.
I wish you luck. Its such a huge decison and I know all about wanting to run away.
Hugs to you in your journey0
