Just got diagnosis and new here

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Artista928
Artista928 Member Posts: 2,753
edited June 2015 in Just Diagnosed
Just got diagnosis and new here

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  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2015

    Hi,

    My left breast has been bothering me for a very long time. I'm 50 and chalked it up to hormones. I also have a generalized anxiety and depression illness for ever now. Taking meds for it for years now. Bad me, with my gen anxiety it's really hard to get me to go for preventive stuff. If I feel not too bad, I don't go to drs as it's too much with my mental issues.

    So last Tues I woke up and like over night what used to be annoyance but nothing really standing out to some pain, big lump type thing easily felt and discomfort. I got in to get a mamo, then they did an u/s. It looks like an alien in there. You can see the lump but there's all kind of 4 leaf clovers around it that puzzled the radiologist. So biopsy was done the next day, last Thursday.

    Both the dr who's been doing this full time for the past 35 years and the u/s tech were saying they've never seen anything like this ever. It took more digging as it wasn't just a lump to go to but I guess to those 4 leaf clover wings type of things to. So he said it's not cyst or fibroid. If it was infection I would be screaming bloody murder so that's out. So the only thing he could come up with is it's either a very large and smaller blood clot formations, a combo of tumor and this, or just tumor. If it's blood clots it'd resolve on it's own. Others, surgery is needed so it'd be lumpectomy v masectomy. I should note my breasts are huge and have always been not lumpy per se but lots of mass to them (don't know the word). So there have been false alarms before but most they did was an u/s and take fluid out of cyst.

    Discomfort and sometimes shooting pain. Of course worse at night. Luckily I don't work so I can sleep during the day which is of course minimal too. Got call yesterday that it's tumor, forgot the cm but it's almost golf ball size. No evidence of blood clots so all that weirdness I guess is all part of it. It doesn't sound nor feel like to me lumpectomy will be an option- would be surprised after seeing it on the screen. It looks like an alien!

    I have a consultation with my surgeon next Thurs, a whole friggen week more wait. Great. Meanwhile my right breast has been acting like my left one did long ago. I know it's not in my mind, even though the mamo didn't show anything. I've heard it still be something cooking. But the left was always more forefront so I basically could ignore the right.

    I guess next Thurs when I see the surgeon he'll tell me my options and give me a surgery date. I have no family history and don't know anyone having gone through mastectomy much less probably bilateral. I know everyone is different, but can anyone tell me basically how it goes? If I have both out, how long you're in the hospital assuming no complications. If they take them both out and find lympth nodes effected, are you in longer? Is there more surgery for that which I would think so as they'd have to do path on it to see what's up there.

    How long do you need help, like someone staying with you if you do come out feeling horrible? I mean from what I saw, I highly doubt I'm going to be going chemo free. I have a busy friend nearby and a bro who lives in LA but neither can be 24/7 for long even looking at 2 schedules. Is it like you feel like you have the flu where you just don't feel like doing anything as the worse case if you react poorly to chemo? Just trying to get a sense as I have a week to stew and stress.

    Sorry for the long post but thought I'd be as thorough as I can off the bat. Any advice, info would be greatly appreciated. I don't have any one to gage against in real life. Thanks!

  • Kicks
    Kicks Member Posts: 4,131
    edited June 2015

    Whaf is your DX? It takes a biopsy to determine the type which goes to the TX plan .

  • Kicks
    Kicks Member Posts: 4,131
    edited June 2015

    Whaf is your DX? It takes a biopsy to determine the type which goes to the TX plan . There are MANY variables - all BC is not the same, same TX or prognosis.

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2015

    Had biopsy last Thurs. Just got my records.

    Invasive ductal carcinoma is final path. BI-RADS: Category 6; known biopsy-proven malignancy.

    lesion size- 4cm, location 2 o'clock 4 cm from nipple of left breast.

    Surgeon consult appt is next Thurs so 1 week. I have discomfort a lot and occasional sharp pain. Right breast while mamo showed fine (didn't do u/s on it) can have a little discomfort/slight pain from time to time but much less than left.

    Thanks for any guidance/help/advice/knowledge! I'm assuming it's going to be left masectomy vs both. I'm 50 and don't want to deal with this. I may even not have a choice as I don't know if 4 cm is considered too big for lumpectomy or what.

  • RosieMjdtrt
    RosieMjdtrt Member Posts: 30
    edited June 2015

    if you are large breasted you don't necessarily need a mastectomy. I had 10 cm tissue removed and boob looks pretty good. My DD size gave her plenty of tissue to move around. As far as chemo, you will need to wait until they remove it and find out stage and grade before they decide your treatment. The hard part you should prepare for is the waiting. I was diagnosed in March but didn't have surgery until 2 weeks ago. Had to wait for my period to get MRI first. Now I'm waiting on the oncotype results to determine treatment plan.

    Best of luck to you. This is a great place to be to educate yourself and help pass the time.

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2015

    I'm 42 DDD probably bigger than 42. I'm 50 and not too concerned about it per se in that I live alone, don't have a bf and so far don't have fear of it being all gone because they do good reconstructive surgery. Also these are too big and heavy. I'm very dense in the breasts and always wished I could get reduction, though of course not this way so I'm pretty sure even if lumpectomy is an option, I would say no and do both to be done with it.

    The only thing is the nurse who sees tons of bc pts says you do a lumpectomy and good chance later on you'll have to do a total. I have 2 lesions. I've read it should be 1 and less than 4 cm for the best decision to be lumpectomy if you don't want to go through another surgery in the future. I'm not afraid to get it taken and the other one too because that one bothers me too even though the mamo didn't show anything on that one.

    Thanks for responding to me. I welcome any one elses thoughts as I have no one in real life and am pretty clueless other than researching and asking that nurse general questions. I know the only one I must listen to in terms of what to expect is the surgeon but hearing different exp is good too if you have the same type! Thanks!

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited June 2015

    When I had my first consult with my surgeon, I told him I wanted both gone. He mumbled some stats back, I insisted BOTH. I said I wasn't doing this again. It's my body, my choice. If he hadn't agreed, I'd kept looking.

    Usually, you are in hospital over night. You will need somebody to take you home. Bring a small pillow for under the seatbelt.

    After the first day or so at home, you should feel ok. Not wonderful, ok. Have things you use at counter height, it's difficult to raise your arms. No driving till drains come out, so lay in supplies. Showers, depends on doc. Clean before surgery and learn to ignore dust bunnies!

    Best wishes.

  • RV6gal
    RV6gal Member Posts: 331
    edited June 2015

    Sorry you find yourself here Artista928. Spookiesmom gave you some good information. I just wanted to say that I remember that the waiting in the beginning was the one of the hardest parts about this whole thing. Once you have had your consult, you will have a better idea of what you are dealing with so you can set up plans.

    Wendy

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2015

    Thank you all for responding! Appreciate it much!

    Spookiesmom, so you're in for 1 night only for bilateral mastectomies? I thought is was 2 or maybe even 3 from what I read on another bc info site. I hope I'll be fine after a couple days. Seems it's so individual. Found out a 4th cousin of mine who I don't know but my bro does said she caught it early so it was small and had a lumpectomy. I think that was out the same day but she had to have 6 months of brutal chemo. Seems hers was aggressive and she felt horrible much if not the whole time.

    So stage means like whether it's spread or not and how far? type is what I typed for myself. And what is grade? Trying to get these terms down as it's confusing so I can sound a bit educated for next Thurs. Thanks!

  • maxdog
    maxdog Member Posts: 147
    edited June 2015

    Welcome. I am having a BMX at the end of the month. MD said 2 nights in hospital, then home.

  • I_Spy
    I_Spy Member Posts: 507
    edited June 2015

    Artista the number of nights in the hospital depends on whether you are having reconstruction started right away, I think. I am having Tissue Expanders placed after my mastectomies, and my plastic surgeon said 2-3 nights in the hospital. The Stage is whether it has spread and how far; the grade has to do with the type of cancer that it is. The surgeon oncologist needs this data in order to decide on the best treatment plan. And yes, everyone will tell you that waiting to talk to the doctor and get the data and make the decisions is so hard. Once that is all done you're sort of along for the ride.

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2015

    Thanks. I guess it depends on the surgeon even with BMX. Thing with me is I am very fatigued and not just because of this stuff. I have generalized anxiety issues and am on meds on it. I either can't sleep even if I'm dead tired or can sleep all the time, but either way, I'm always dead tired. I have obstructive sleep apnea too which I can't use cpap cuz then it's 0 sleep. Hope they invent something other than a nasal mask and machine with that long tube. Nerves actually aren't getting to me because I'm on meds for my anxiety which leaves you numb. Not always a great idea for me to drive so if I do, has to be when I'm feeling a bit more energy and not like a massive sleep deprived fatigued zombie. Sleep meds don't do a thing. Have had these issues forever now.

    So I'm going in like this. If I'm to be honest with myself, it doesn't sound like I'll be able to be ok after a few days to do things on my own. I mean I barely have energy to pull myself to the bathroom. Can't imagine after surgery and then after chemo... :/

  • jmute
    jmute Member Posts: 34
    edited June 2015

    my wife just had a BMX last Thursday, she spent a little over 24 hours at the hospital. I'll be glad when she gets her last 2 drains out next week.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited June 2015

    I am copying over this post written by Beesie, one of our resident experts. It gives a very thorough, and unbiased, list of considerations to think about as you make your decisions.

    "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

    Twenty-Year Follow-up of a Randomized Trial Comparing Total Mastectomy, Lumpectomy, and Lumpectomy plus Irradiation for the Treatment of Invasive Breast Cancer

    Twenty-Year Follow-up of a Randomized Study Comparing Breast-Conserving Surgery with Radical Mastectomy for Early Breast Cancer

    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?

    .I hope that this helps. And remember.... this is your decision. How someone else feels about it and the experience that someone else had might be very different than how you will feel about it and the experience that you will have.  So try to figure out what's best for you, or at least, the option that you think you can live with most easily, given all the risks associated with all of the options.  Good luck with your decision!"


     

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2015

    Oh I see thanks. Yeah, I want it all done in one sweep. I guess it depends on if the plastic surgeon is available as well..? How long after the surgery does chemo start, or is that individual too? My problem is I have a good friend here who is going on vacations a week every month and also has an ailing mother here that calls on her help. The only other person is my bro in Los Angeles (I live in SF Bay area up north) but he has schedules he has to keep an can't just come up here and chill with me. So I'm trying to get an idea of how debilitated I'm going to be. I'll stock up on things. I live alone in a small apt. My parents are to be kept in the dark which is easy because they are not near here at all. Part of why bro can't chill here is my dad who's an hour away from him and needs his help every couple weeks or so. So I'm more worried about aftercare should I have more issues with fatigue and energy because I'm already pretty flattened and nothing's started yet. It's not stress. I've always been like this with sleep apnea, my generalized anxiety which my meds help but still...

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2015

    Thanks all and thanks for the decision making post ruthbru! You guys are all great here and I appreciate it much! X

  • Kicks
    Kicks Member Posts: 4,131
    edited June 2015

    "No driving til drains come out - ". I've never before heard that. Yes, someone to drive away from hospital. My last drain was removed 4 weeks post UMX - I drove myself to all my appts (Drs knew I did and nothing was said that I 'couldn't' drive myself. I started adjuvant Chemo 3 weeks post UMX, a week before the last drain was removed.

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