Extremely Overwhelmed - Help
I had a treatment plan in place, they decided to cancel that to do an MRI before making a treatment plan. I know this is a good thing, but again leaves me up in the air about what's going to happen next. It has been 17 days since my diagnosis of DCIS and I am just TIRED. I slept my weekend away, which is not like me and disturbing to me. How does everyone deal with this part of this journey? And, I think I'll be ok once I know the treatment plan and can plan around or though that. Is that everyone elses experience? Thanks for any informaiton you can provide.
Comments
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Sorry you're feeling so overwhelmed. Don't be too hard on yourself. This is a scary time with all of those unknowns out there. It will get better. Once you know what you're dealing with and get a plan in place, it does get easier. Promise. Hang in there.
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This time is the hardest. Sending good thoughts your way.
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hang in, take it as a good sign that they are doing the MRI as they seem to think it will help answer guestions
that is what a pals doctor husband said to me when I was waiting in your spot
his comment...."there is something they need more info on" and he was right even though he was not a cancer doc at all.
yoga breathing is good now or maybe a massage, facial, mani or pedi to take your mind off of things?
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Positive- Our first instinct when hearing the word cancer is "Get it out of me!!!" It's a very anxious time. But the good thing (if anything can be good when it comes to breast cancer) is with DCIS you have time to gather all the information you need to choose a treatment best for you. An MRI will help you do that. It just gives the doctors a better picture of what is truly going on and helps makes sure there's not some additional cancer that wasn't spotted by mammo or US. This gives you additional time as well to prepare. You're right, though, that once a firm treatment plan is in place it becomes much less stressful. I had 3 months between my dx (diagnosis) and my mx (mastectomy) and I felt like I was having an out of body experience during that time! Hang in there- it'll get better. I'm sorry you are having to deal with this, though. (((hugs)))
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Positive--good name----Almost everyone goes thru this time of waiting for for things to get moving. But the time goes by and u'r plan will be in place It's not easy but believe it or not it goes by and an MRI is a good sign--they're checking on everything. I personally like aromatherapy it's very relaxing.
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yep - this was the hardest part of this journey so far, the waiting before treatment, before surgery. I had to wait 6 weeks - i was going a little crazy. But it did give me time to read about my dx, preventatives like diet and exercise.....and just to keep my life going.....by the time surgery came, i wasnt even nervous any more - tho i would have preferred to have things go a little quicker.
hope your MRI gives you some peace - mine showed no other cancer any where else - so that was a huge relief for me.
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Hello positivenergy....love the name too!
One thing that I can say to you with almost 100% certainly, is that nearly all of us here have been where you are now. It is not a pleasant place to be. Looking back, it was probably the most difficult time of this entire experience. So many questions, fears, uncertainties....so many decisions to be made and second guessed. I agree with the others who have said that your docs ordering an MRI is a positive thing. In this game, the more information the better. I would have liked to have had an MRI prior to my unilateral mastectomy (UMX) last June, but none of my docs felt it was necessary. I finally had one in April at my one year check up, and all was clear in both the foob and the boob!
I guess the best advice I can offer is to try to stay in the moment and not get ahead of yourself. I tried to learn as much as I could so that I knew what questions to ask my doctors. Make sure you use reputable sites. I tried to stick to as normal of a schedule (around all the doctor's appointments) as I could and I tried to do something I enjoyed non breast cancer related every day. I got a book about preparing for surgery by Peggy Huddleson. It is called Prepare for Surgery, Heal Faster. It has some great advice on how to prepare your body and mind for surgery. I bought the CD that accompanies it that has a guided meditation and listened to that twice a day in the weeks prior to surgery. I believe that it helped me immensely. I upped my yoga practice, tried to eat well and tried to get enough rest. That was a tough one at times. If you need it, ask your doctor for something to help you sleep. It is so important.
I found that staying busy was helpful for me. Once I had my surgery date, I kept busy getting ready or nesting. I cleaned my house well, cooked meals to freeze for later, moved items down lower so that I did not have to reach for them (clothes, laundry detergent, kitchenware etc.). I shopped for pillows, button up shirts, front closure sports bras that my PS recommended, silky PJ bottoms (makes sliding out of the bed easer), drain care supplies, books......
As far as it being 17 days...I know that seems like an eternity to you now. I was diagnosed on April 28 of last year. And of course, all of it started with my yearly mammo earlier in the month. I did not have my UMX until June 15th. Like Kate said, with a DCIS dx, we have time to get our ducks in a row. I know that we reach a point where we just want it all behind us, but those of us with this dx. are fortunate that there is not any real urgency to move to immediate surgery. We have time to learn, question, prepare....
Soooo, positivenergy....I'm sending you all the positive energy I can muster this afternoon. Take lots of deep, cleansing breaths. It helps. Try not to imagine the worst...if it does turn out to be more, then you will have lived through the worst twice. Come here often for support and education. This site has abundant love and will lift you up when you are needy.
Take care and remember to breathe....
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Wow, you ladies got me through this day. Thank you so much. Some great information and support, I'm so glad I found this site. I will be staying in touch for sure and hope to be able to pay it back after I have completed this journey (as complete as it can be). Have a great evening. Hugs to you all
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To Positivenergy - I know the waiting is hard. I went through 2 sterotactic bx's and 2 lumpectomies and waiting about a week for each path result. It was tough. Just find other things to do if you can.
Just one suggestion re the MRI - sometimes it gives false positive results. I know, it is known to be accurate. But I faced that exact problem with my MRI after the stereotactic (core) bx (#1) which led to the MRI core bx #2. The MRI showed typical features of an invasive cancer or Grade 3 DCIS, but much larger (~9 cm) than the calcifications seen on mammo. That scared the s**t out of me. I had recommendations to do a mastectomy on the basis of the "clear" results of the MRI. My doctor (BS) strongly suggested I do the core bx in the MRI to get real data on real tissue which I really supported as I could not understand how such a large area of 'cancer' on the MRI would not be visible on the mammo or how it could have grown so fast (had clean MRI year before). Long story short -- MRI core bx of a representative area in that very suspicious area showed fibrocystic disease, hyperplasia, and inflammation but no cancer. I thus avoided a mastectomy and could do a lumpectomy safely. MRIs are good but not perfect, especially in women with lots of inflammatory changes in their breasts like hyperplasia or atypia (or others). Make sure you get pathology results before you make a decision.
And yes, keep in mind that, as Susan Love has said, "breast cancer is not(never) an emergency". Make sure you ask lots of questions and take some time to get the information you and your doctors need to make the best decision.
Good luck
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Myna, thank you so much. This is good information because I might have reacted if I got that kind of news instead of stopping and thinking about it. I hope that you are doing well, I see that you are probably still doing the Rads, you take care of you. Thanks again and have a beautiful day. Brenda
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My MRI also overestimated the size of my lesion -- just like Myna. The area that was described by MRI ended up being a bunch of abnormal (but benign) cells. It all needed to come out in the end - but the radiologist had said that she wasn't sure if a lumpectomy of such a large area (the area + clean margins that would be required with the lumpectomy) was going to be cosmetically pleasing. I discussed this with my surgeon and we decided to try a lumpectomy first and if the margins were not clean then we would procede with a mx. Luckily, the margins were ADH and other benign stuff. It did cause me a weekend of stress
This is most definitely the worst time/part positivenergy ... once the "plan" is in place things get much easier emotionally.
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Hi Positivenergy,
You have come to the right place. There is so much good information on this website. Listening to these ladies (and men?) has helped me enormously to make up my mind as far as surgery, treatment, etc. I was very lucky with my local radiology department. They were on top of scheduling everything and gave me the results right away. So at least in your case, they want all the information they can get so you can make the right decision. And don't forget, it is your decision on what you want done. My doctor just assumed I would have a lumpectomy, radiation and tamoxifen, without even letting me know I have choices. So good luck to you. And it does get easier!
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Hi - I am 2 weeks post-op, 4 weeks from diagnosis. Yes, it was, unbelievably, 2 weeks between those words "you have a form of pre-cancer" (the breast surgeon was starting off gentle with me) to the operating room---primarily because a slot opened up in the calendar and the surgeons were able to grab it for me. But that time was extremely anxious for me - I worried about every twitch in my body (esp. near my lymph nodes, so super-aware of them suddenly), worried I was losing weight which is a problem for me, worried I would not be making the right choice for surgery procedure....in the end, what helped a lot for me was to watch something that made me laugh, or go out with friends to distract me in the evening, then deliberately NOT do any more reading or internetting about breast cancer afterward. And "take deep breaths" advice actually is really useful and you should do it whenever you remember it!! I would relax my face and shoulders in the exhalation and somehow that would help to refocus my mind as well. We've all been there!
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positivenergy: My mamo was Jan 11th, biospy surgery on 3 area's right side, came back one area DCIS, others LCIS; after that MRI which showed some weird stuff on the left two of which had to be biospyed the following week; 5 in all from mid January to mid February. as each biospy past I knew what my choice would be. what I also knew is that no matter what nor how comfortable I was with my doctors I was going to go for a second opinion. So for the first two weeks in March I did just that and by the end of March I switched my doctors to a new group and scheduled mx with immediate diep reconstruction on 4/23. I am currently 8 weeks out of surgery. The biospy and decisions you have to make were really really hard but I learned to listen to my gut and my feelings. As soon as I walked into the door of the second opinion doctors, both BS and PS I knew they were the right ones for me and I had to change. So my advice...you will know when you make the right decision for you. Good luck. Rtnyc
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Once again, overwhelmed and blessed for all of these supportive responses. However, I have to apologize for "my bad" I did not even think about men being on this discussion board. Thank you to all of the men that are strong enough to participate in this discussion board as well.
Still no results on the MRI from last Friday, my anxiety is starting to get to me now. Hopefully soon!!! And, hopefully, great news!
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Waiting for the final diagnosis until surgery is over is an anxiety-filled time. You want to call the doctor and say: "Please, please tell me that everything will be all right." There are biopsies and tests and pain, discomfort, and the people around you can't tell you what the future holds. I kept thinking: I wish I could run away from this, I wish I just didn't have to deal with this.
It's taking a leap of faith. You may have to make decisions quickly and you have to listen to your gut instinct. Before making the decision to have the type of surgery I did, it helped me to study as much information as I could so I would have some idea of what the options are, of what might happen, of what is likely to happen. I had the surgery less than 3 weeks after finding out that there was DCIS. I wanted the abnormal cells OUT, but I also didn't know if I was prepared and then realized that I never would be. I knew the initial diagnosis could change, that it might be better or worse than it appeared to be. I still have many questions and uncertainties.I think you have to draw on the strength inside yourself and draw deep, and on the strength of other people who care. The people who use this board have been a tremendous help for me. If only I had known about this forum before diagnosis and surgery! It helps to know you're not alone in this. Wishing you the very best outcome.
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Like everyone here has said the waiting in the beginning is the worst part. When you get your "fight plan" it is easier. You know what you have to do and get about doing it. I am over 3= years from where you are...you will get to the other side of it. Breathe.
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The results are in. Not sure how I feel at this point. MRI shows a large mass in my right lower breast, I felt something might be wrong there too because it hurts just like my left one. The left mass is larger than they thought it was.
I'm confused how the MRI would show the mass as being much larger when the mamo and the ultrasound could barely find it. I'm scared, but feel like it is going to be what it is and I will just have to deal with it. My sister said what if you say I just want a mastectomy, won't that eliminate all of this... I guess it's an option - RIGHT?
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I'm so sorry Postivenergy. What are the doctor's recommending at this point?
A BMX is an option some women take, but nothing to rush into out of fear.
Hugs.
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((hugs)) to you......you dont have to rush to a decision.....take time, be with the people you love.....the answers will come, youll know what to do.
wishing you lots of peace in your decision making........
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Hi Positvenergy,
Sorry to hear this. Wondering how they made the dx of dcis in the first place, needle biopsy or lumpectomy ?
I am having a bmx next Tuesday. You need to have all the facts before you make any decisions, wishing you all the best...
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Hi Positivenergy,
Sorry to hear the new information on the MRI. However, make sure you consider doing a core biopsy of the area before you decide to do a mx. Your situation now sounds a lot like mine. . . Also, make sure you have a breast surgeon (BS) you trust. You may have to go with your gut on this one or maybe a trusted doctor can advise you who is best.
Also make sure the surgeon is looking at all the options and have a Q&A session with them. Bring a list of questions. If you do not know what to ask, you can send me a private message and I will respond asap. Fortunately, my BS was the one who helped me make what I think was the right decision for me (Lumpectomy). In my case, a lot of tissue was removed from the L bst and I was still able to get great cosmetic results since my surgeon is an oncoplastic surgeon. You may want to get opinions from multiple surgeons before you decide what is needed (or wanted) in your case.
You first have to determine if your mass found on MRI is malignant or benign. That will determine what really must be done. If benign, you have choices that you may want to consider. Hope this helps.
Hugs to you.
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Great advise Myna!
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Positivenergy, MRI is prone to over-estimate size -- meaning it can light up for benign things too. Your surgeon will tell you whether or not it is possible to have a lumpectomy first and then see what the pathology is like before deciding what else to do. I had exactly the same thing happen, large 4cm area lit up - and my surgeon took a 3.5 cm "chunk" out and it ended up the actual cancer part was not nearly as large as the MRI had found; if the margins from the lumpectomy would have come back with cancer on them, then we (me and my surgeon) were ready to move on to the mx. For the left sided mass - if you don't mind waiting on pathology results after an initial lumpectomy, you might have better results in the end.
Regarding the right-side "stuff" -Myna has sound advice, you need a biopsy before you make any more choices on it, you have no idea what it is at this point.
This is such a difficult time, but you don't have to make quick decisions at this point ... unless you want to, that also is YOUR choice. If waiting and seeing, or moving in a more stepwise fashion (lumpectomy +pathology +another decision), is not something you can do without driving yourself crazy - then yes, MX is an option.
Best of luck to you.
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I feel for you. The waiting is so hard!!! It will be hard now with this newest info. I think you just have to take it one day at a time. Because this journey does involve a lot of waiting for test results. On the topic of mastectomy, I wanted that from the start, before I even had biopsy results on my left side. I felt persuaded into lumpectomies and radiation, which is what I opted for. When it came time for consult with radiology onc., I decided I did not want to accept the possible side effects from radiating both sides. I also weighed out the reasons others chose bilateral mastectomy, how I would feel losing both breasts, would I be able to handle future BC scares, etc. There are also many details you will find out about your cancer cells. You probably have noticed the ER, PR, Her2 +/- oncotype scores, grades, stages, IDC, DCIS, etc. All of that may help you decide if you do in fact want mastectomy, or if the MD recommends it. It is your choice ultimately. Not an easy one.
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positiveenergy... For me, the MRI showed that my mass was larger than what they thought from the US (mammo didn't show it at all)... but after lumpectomy, it was actually larger than the MRI showed...and I had a positive node which they didn't know until full pathology came back.
I had an MRI that showed some "other suspicious" stuff, and before lumpectomy had it biopsied... The other stuff turned out to be benign.. so I went with the lumpectomy... But I had IDC and needed chemo, and was then supposed to have radiation... During my chemo, I had a lot of time to reflect, and decided that I WANTED a BMX... I wanted to not worry about this... and my cosmetic results after the lumpectomy were excellent... clear margins etc... But my desire to never worry again outweighed everything... and that "other benign stuff" included a papilloma, which 2 doctors said should come out... so I knew I needed another surgery regardless....
So, I decided to have MX, and then I needed to decide on reconstruction. This is not a one size fits all... and another reason to take your time, and do some research. If you chose to have a MX and recon, you would need to decide it you want implants, flap surgery (using your own fat), fat grafting,... and no reconstruction is also an option. I feel doing it right the first time is always going to give a better cosmetic result.
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Dear All,
Totally agree with all the posts . . .ultimately everything is your decision! As a person with some science background, I felt I had to have all the information in front of me before I decided. However, if you feel that you would rather have a mx, for any reason, that is reason enough. Speaking for myself, I had to choose between a lumpectomy and later close surveillance (even with Rads and tamoxifen) or mx+tam +/- reconstruction or bmx+tam +/- reconstruction. For me, I could not bring myself to choose mx when I had another good choice (by information I read and my BS's opinion). But that was my choice; not everyone will agree. As I sit now, almost halfway into rads, I am happy with the decision I made, although I do have to tell you that I have questioned it a few times before I got into the routine of rads and no serious side effects on tamoxifen.
I just think everyone needs to have all the info on their particular case in front of them before making a serious decision. Believe me, this was probably the hardest one I have faced in my life especially since some of the info said I should consider bmx.
I wish you many positive thoughts as you go forward.
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Positivenergy,
I'm sorry that your MRI muddied the water instead of making things easier and clearer. All of the previous posters have given some great thoughts and advice, so I don't have much to add. I can't agree enough about finding a surgeon or surgeons that you trust and feel comfortable with. And, make sure you get all of your questions answered....take someone with you to your appointments and/or take a small voice activated recorder. It always helps to listen to the visit again once you get home. I was always amazed at the stuff that I missed in the office. And an important piece of advice that can't be stressed enough is that no amount or type of imaging will give you a definitive answer to what is going on inside your breasts....only a pathologist looking at your tissue can make that call.
This is a tough time. Try to be kind to yourself and listen to what your heart tells you. Listen to those you trust and you will know what to do. Sending lots of warm thoughts and positive energy and gentle hugs. Lots of long, slow, deep breaths are in order too. Take care.
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Have to add that my lesion was smaller than the mri as well.
Thinking of you during this hard time......believe that the answers will come to you - we've all had those moments of clarity when it finally does come to you. Get your dream team in line......doctors that you trust.... Take care of yourself!
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I understand and agree with you all about information and will do that, thank you. This all got a whole lot scarier and real for me today. I know I will survive it but right now not feeling so strong. First time I can't sleep and I know that's not good. How do you get through every day, especially your job. I know it's important for me to keep as nomal as possible, but it's very hard. Love to all my friend here can't thank you enough. Brenda.
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