New Diagnosis Facing BMX
Hi, I have been reading a lot of your posts. So glad to have found a site with so many people who are facing the same issues that I am! My Mother's Day present this year was a diagnosis of DCIS in both breasts. I suppose that I should really look at that as a gift, because it appears that it is all contained, there is no invasion outside the ducts. Unfortunately I had been very busy and distracted with job changes and issues with my husband's health and I neglected my own mammograms for three years. Apparently my breasts were busy during those three years! About 6 weeks ago I started having some bloody discharge from my right breast. This happened several years ago and I had a ductogram which was negative. So I wasn't too concerned, but it did prompt me to get my overdue mammogram. They scheduled me for a diagnostic mammmogram and the radiologist added an ultrasound. Again, I was not too concerned because this had happened to me in the past and all was well. During the ultrasound the radiologist mentioned that she was concerned because there were two sites in the right breast. She also saw something in the left but felt that it was most likely fibrocystic tissue. So the next step was the needle biopsies. Several days later I had three needle biopsies, and then the results came in.....positive on the right and positive on the left. Wow, that was some phone call. I am a nurse (formerly in hospice and oncology) so I knew the message that she was delivering, but it still was pretty mind-numbing. There was a problem with the biopsy (somehow the tissue samples from the two sites on the right got mixed together), so they could not know for sure if one, the other, or both were positive. So lots of decisions to make...further testing? Another biopsy? The surgeon talked at length with the radiologist who felt that the likelihood is high that both sites are positive. She did not highly recommend an MRI because they can show a lot of "stuff" like benign papillomas, etc. (I saw on another post that someone said her doctor said her breast was "busy," sounds like that is what is going on there for me too). Decisions, decisions. I have decided to go with bilateral mastectomies, even though she assures me that she can do a lumpectomy followed by radiation on the left. i think with the multiple sites that I would never be able to rest easy unless I know the cancer is GONE! I have decided not to go with reconstruction. My breasts are part of me, I am not my breasts. If I can't have my own breasts then I don't want any. I would rather look in the mirror and know that my cancer is GONE, I really believe that if I looked at reconstruction then it would just be a reminder that I had cancer. Thankfully my husband is very supportive; he just wants me to be sure that I won't regret my choices later. I figure that I am 53 years old, and I have never been one to be overly concerned about how I look to others. I am very glad to have found this forum; it's nice to read and "talk" to folks who are in similar situations. I have seen some other posts from women who have been dealing with some of the same life issues that I am now facing: I am the one who has the income and carries the benefits; my husband has been out of work for several years and is not able to even get an interview (more than one recruiter has told him that if he is not working he won't even get a call from someone, and that even though companies can not discriminate based on age, he is still 53 and there are many younger candidates out there). I am very fortunate that my boss and the organization that I work for are very supportive and flexible. But, I am still SCARED to death of the surgery (probably because I am a nurse and I know too much). I am very concerned because I have a lot of issues going on at work that I need to take care of, so the next few weeks will be very busy.
So.......at this point it seems that my surgery will be June 12, as long as all the pre-op stuff goes well. I go back to the surgeon next week to sign consents, and I will do my pre-op testing then too. Just wanted to log in and introduce myself. It's nice to have a place to go and talk. I think my husband is very scared and I hate to keep "yapping" at him with my thoughts and concerns. He is extremely supportive, but there are things that he can never understand because he is a man...
Martha
Comments
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(((Martha))) Welcome to the club no one wants to join...so very sorry you have to be here but glad you found us...I am a nurse too, so I know what you mean about "knowing too much" and, like most nurses we don't always see the good outcomes so it's easy to let worst case scenarios dominate our thoughts. It's normal to be afraid...there are so many more questions than answers at this stage in your diagnosis but, it may be hard to believe...it will get better as you get a treatment plan and feel like you are fighting this beast...There are so many forums here where you will find support and wisdom, hang in there, let us know how you're doing...(((Hugs))) Maureen
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Thanks Maureen....and thanks for the (((hugs)))! So much is happening so quickly, but now it's a waiting game. Surgery is scheduled for 6/12. I know it will be here soon but it seems like such a long way off. I have lots to do at work to prepare for a leave of absence, so at least I don't have a lot of time to think about it (during the day). It's nice to know that there are so many out there who understand. As I said before, I am very fortunate to have a good support system in my husband and my boss. And I just found out yesterday that the CEO of our organization wants to know what she can do for me to help....any suggestions from anyone who has been through the surgery? She offered to send food, but hy husband likes to cook and it is a good distraction for him. Are there any other ideas out there of something that would be helpful when I first get home from the hospital?
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Hi, RhodyMMM -- sorry that you need to be here, but it is an amazing resource! I can't imagine going through all of this without the wealth of information provided here.
My husband loves to cook too, but after a while he was visibly relieved to have someone cook for him once in a while! Everyone will want to help right away, but let them know that you will probably need more help in 2 weeks when your hubs is worn out. Hopefully you will be feeling much better by then since you will not also be recovering from reconstruction.
How would you feel if you get the path report and find that there was nothing on the left side because they mixed up the slides? I had an MRI and it showed suspicious spots on the right side that they said could be monitored every 6 months. I chose BMX and had no regrets when the spots on the right side turned out to be false positives from the MRI. If you think you would have regrets, maybe you should do another biopsy to be sure?
Best wishes with all the planning and preparing! Just plan to rest afterward and let people take care of you. I read cheesy books, caught up on old movies, and phoned old friends while on pain meds. It wasn't all bad. Life will get back to normal and you will have a great summer. Take care!
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I would redo the biopsies so you know exactly what you have and where it is. MRI does have false positives but it is super for finding stuff and getting an idea of how big the affected area is. I would do that also.
Then you have a very clear idea of what you are facing and if you are a candidate for breast conserving surgery if you are interested in that. If your area of DCIS is small it might be a possibility. I would not conduct bilateral mx without a full set of data to make the choice.
I did prophylactic bilateral MX with no recon and frankly it was a very easy surgery, fast recovery and no problem. I have full range of motion and am the same in every way (except without breasts
Don't be too scared of it, even though with your medical background you know the scary stuff. -
Thanks for the responses and the advice. I did ask the surgeon if se thought it was worth getting more biopsies, that was my first reaction. She did not think it would be helpful since there are sites on both sides. The samples that got mixed up were from the same breast. So I definitely have the DCIS on both sides. beacon 800, I really appreciate your comment about the easy recovery from the BMX with no recon; that is what I am hoping for, and that's what the surgeon anticipates. The other day I spoke to someone from a place that does mastectomy bras and forms, and she mentioned that she has seen this surgeon's work and that she does a beautiful job. That was the best news I got all week! I am comfortable with my decision, and my husband is too. I just want this to be over so I can move on to new and better things!
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Welcome Martha...I'm fairly new here myself and I can tell you that this is one of the best places to be for support. I just want to share just a little bit of advice that I wish I had back when I was first diagnosed and faced so many difficult decisions. You don't need to worry about reconstruction right now...it is very possible to look into that much later when you have taken care of the more urgent decisions. I had a mastectomy and a year and half later I still haven't even organised to get fitted for a prosthetic. I have just recently decided to look into getting a prosthetic. I'm just trying to say that you don't need to feel so overwhelmed right now...it's o.k to just focus on your treatment and healing for now. I have worn a padding in my bra and made sure i had clothing that weren't too clingy on the top area and I managed to get aroud like that. I realise now it's not a long term solution but I know I am in a better mind space to make more informed choices now.
This is a great place to explore choices as far as prosthetics and reconstruction etc.
I'm so glad you have found this place...again I say Welcome .
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It's been one year since my last mammo diagnosed with DCIS November 2nd 2011, had lumpectomy clear margins, rad-for 8 wks, finished rad in April 2012, lumpectomy was no big deal for me can hardly see the scare but I was in the hospital nov For 2 days with chili tie from a reaction to vicoden, so girls be careful with the after meds, that was more dangerous e for me! Haha I'm on this forum for all the girls throwing out statistics, I'm having a mammo we'd and report to u all if I have a reacurrance, or in other breast, as it is like tissue, u can call it stAge 0 but it doesn't make me worry any less. My best friend also 49 is fighting for her life in the City of Hope with stage 4 - 5 breast cancer and she found hers a month after my Radiation was final, what she has been through makes me feel like mine is a walk in the park. My side effects from radiation were a lot of dizzy spells, lot of hot flashes, night sweats, which have past, maybe one once every few months, I do feel like radiation gave me something scientist r calling chemo brain, but its not from chemo it's from radiation, I have had ringing in my ears and clicking like tinnitus, started during radiation has never past, and foot plantar type thing maybe radiation effected the joints started inflammation I am not overweight and in really good shape. And I have read that both these things can be caused from radiation. But my radiologist assures me that radiation has none of these side effects. My best friends radiologist begs to differ. So we all react differently to everything, we r all individuals, and all we can do is love every minute of every day!
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Oh and to bettylovestrees, I love and agree with your advise! And by the way I love tree's too! And I hate my spell correct! And on my notes I tried to spell cholitis five times
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Shinny,
LoL....I don't even know what 'cholitis' means...hehe. Nice to meet another treelover:)
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So surgery was yesterday. BMX w/sentinal node biopsies on both sides and ended up with removal of the axillary nodes on the right side. Now to wait for the final path reports and next steps. The doctor must have done a great job...not much discomfort, just took some Tylenol this morning. Family and friends have been incredibly supportive-a friend surprised my husband and showed up to wait with him during the 3-hour surgery and then recovery. And my brother surprised me by flying in. Now I need to take care of me...something I don't know how to do!
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Something I didn't think of when I had my BMX years ago - I'd be sleeping on my back for a while. If you are, be sure to get a wedge pillow to put UNDER YOUR KNEES - it eases stress on your lower back - and makes sleeping on your back more comfortable.
Also, don't know if you have drains - but small pillows, one on each side of me, helped sleeping/resting too, while I had drains.
All best wishes - we've all done what you're going through - nobody chooses it, but honestly, it gets better.
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Thanks for the advice. I did know that and ordered a 4-way adjustable pillow to be able to adjust my back position. I will definitely use a pillow under my knees too. BTW I hate sleeping on my back:)
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Wow, it sounds like you are doing great!! I'm so glad your surgery went well & hope you have a speedy recovery & good results.
My favorite recovery item was ironically an old silky sleep shirt (button up) that I forgot I even had. I had DIEP so we also bought a recliner, which everyone wants to sit on.
Sending lots of good thoughts for a continuing speedy recovery!
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Didn't do so well taking care of me, I thought I was being good but ended up back in the OR in the middle of the night with a hematoma that needed to be evacuated and cauterized......apparently I did some bleeding and bottomed out my blood pressure and passed out in the bathroom. Yesterday was pretty rough but today I am home again and following strict orders. My surgeon had to leave the country because of a family emergency later in the day of the original surgery, but apparently electronic information travels to the Phillipines because she surprised me with phone call when I was back in the hospital. My concern at this point, though, is future treatment..she keeps alluding to future treatment, which tells me that she is anticipating chemo. She tells me that this is just a minor setback that will not delay and future treatment plans....
Martha
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(((Martha))) - sorry to hear of your hematoma and need to return to the hospital...Yes, it is hard to take care of ourselves but this is the time to do it:) You seem to be doing well in managing your pain - thank goodness for that - but as you know, pain does help to slow us down and makes us take it easy...sometimes we do too much if we "feel okay" and it's even harder to let others take care of us...At least the surgery is behind you now - YAAY! Sounds like the thought of chemo is weighing on your mind now? You'll find lots of us on the boards who've been thru chemo, so if that becomes part of your treatment plan we can help you. There are many different chemo regimens and each of us faces our own challenges with chemo but, for me, it wasn't as bad as I feared and all the side effects are behind me now. Rest, recover, take care, let us know how you're doing:) (((Healing Hugs))) Maureen
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