Upsetting incident, need thoughts!
Comments
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I'm so very sorry you are going through this at a time when you need it the least. I greatly admire you for wanting to put it right, that says a lot about you.
The older I get the less patience I have for people who turn every situation into their own drama which is what she is doing. At this time you need support and friendship, if she cannot give you this the loss will be hers.
Good luck with your surgery xxxx
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Dear McKaylaleigh, You can tell your know it all friend my story.....the surgeon was so sure when he removed my breast that he got all 13 cm of DCIS. It was the good cancer. None was invasive.I would be fine. Blah blah blah.....guess I wasn't positive enough either because there were very small invasive components of the Real cancer that was out of the duct.....you can tell your friend.
And then one year later, that same cancer that wasn't supposed to be real was now 50 unreal tumors in my lungs. Stage 4 of unreal cancer. Tell her to kiss your butt!!
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You really cannot afford to spend your energy on this right now. I would drop it. If necessary cut it short by telling her that you are going through an emotional period and would rather focus on your health at the moment. Then try to find your calm. Even if you have to go through this journey pretty much alone, you can do it. You will actually find solace in yourself. Be kind to yourself and take care of yourself right now. It'll heal you.
My husband does not cope well with hospital and health issues, so I had to do most of it alone. When he was around I often had to console him or take care of him in some way or another and it was very draining. It does not mean he doesn't care, I think he just can't. He creates hell when he is around in hospital - He shouts at nurses and doctors, he is out of himself. As a result I preferred to go through chemo alone and many times after my surgeries I was alone. Even for my mastectomy I asked him to drop me and leave. And often I would not share what I was going through. I still managed - I found peace in myself. I was my own companion. You will find a lot of strength within you.
You have a husband, may be you can share with him. But you really don't need people giving you crap right now.
I send you a big hug. I honestly wish I could be physically there for you, and I am sure many people here feel the same way. We are behind you. Take that energy and use it. You have many people behind you even though you can't see them.
Take care. I wish you strength. xxx
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Mckaylaleigh, I am so sorry to hear about your friend's behavior. Unfortunately, some people just seem incapable of providing the empathy, support, and compassion that a situation like this requires. Instead, they make it all about themselves and their own needs. I suspect your friend's reaction wouldn't be all that different if you had been diagnosed with invasive cancer. I bet she'd find some other reason to pick a fight with you in that case, too.
Others have provided good advice if you choose to try to reconnect with your friend or if you choose to take a break. I would also suggest looking for other sources of support. Is there a nurse navigator at your hospital? If so, they often know about resources. Also, consider a few sessions with a psychotherapist, who should provide an empathetic ear. This may be too much to do before your surgery, but keep it in mind for later.
You might also think about letting a few more people know about your situation. You may be pleasantly surprised. I was diagnosed a few years after relocating across the country from the West Coast, so I didn't have a deep social network nearby. I wound up telling a neighbor about my diagnosis (long story) and even though I didn't know her very well before that, she turned out to be a wonderful source of support! Her sister-in-law had been diagnosed a few years earlier, so she had some experience in that role.
As for whether DCIS is "really" cancer, I decided that I don't really care what it's called. To me, the impact on my life is what matters, and DCIS has had an impact that is far from trivial. Because doctors can't reliably identify which women will experience a progression from DCIS to invasive cancer, the vast majority of women with DCIS receive the same treatment as women with early stage invasive cancer: mastectomy or lumpectomy plus radiation, often followed by years of hormonal treatment. Until the final pathology report is available after surgery, we don't know for sure that it's "only" DCIS. Bottom line: while we are spared a lot that comes with invasive cancer, we do experience the same types of surgery and often other treatments, which can be painful or traumatic. And we do experience the fear of recurrence.
Please do not ever doubt that regardless of whether someone decides to call DCIS cancer or not, you are undergoing a very challenging time and you deserve support. You will always find it here on these boards. In time, I hope you will find more people in your life who can provide it as well.
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Mckaylaleigh, my surgery is next week too. BMX. It's a tough choice, but I'm ready to do it and get on with recovery and living. It's our best chance to get rid of this stuff forever.
From your photo, I can see that you are beautiful, and from your treatment choice, I know that you are brave. Everyone here supports you. Go into surgery next week and kick this crap to the curb.
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Dear MacKaylaleigh, I realized after reading my post it might have been pretty scary to you. I meant it to be supportive that your tech friend was blowing you off by not listening to your feelings. She obviously doesn't know the stories of our lives like we do....maybe only some statistics. And we are not the statistics. Your feelings do matter. Hopefully you will come out of surgery and remain Stage 0 forever and we will be here shouting in joy!
Faithfully and lovingly,
Brenda E
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A "good leaving alone" sounds appropriate, especially since things are not getting better and you really need to be selfish about your energy and focus right now. If you don't work things out before, please don't spend time with her after your surgery until you get back on your feet and off pain meds. I don't like the idea of your comments being misconstrued while you are in a vulnerable position of healing. I'm so sorry that you are dealing with this dynamic right now. Regardless of her experience and knowledge, your friend is being very selfish. Stay busy with your to-do list, and try not to give her any more energy now.
Beatmon, thanks for sharing your story. It's a good reminder, amid all the DCIS overtreatment conversations, of why we treat DCIS.
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Beatmon, I am so sorry. And, NO, you did not scare me, my heart aches for you. That is why I have done the research that I have, I wanted to be prepared for whatever may come. That was why my friend thinks I wasn't staying positive and needed to stay off the internet. I, as the patient as others have said, see it differently, I want to be informed.
Thanks again everyone. This weekend has been exhausting and I have told her I need some time. I can't go into surgery beat down and exhausted like I feel right now. I thank God every day for this forum, you are such a great group of women and I am glad I found you all
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Beatmon, your comment was important for all of us to hear. Thank you for making it.
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This " friend" of yours as I've discovered with some of my "friends" is not concerned about your psyche. That's stating the obvious. What's not so obvious to most, is that when a friend or relative of ours is diagnosed with a life-altering disease process, the facing of one's own mortality is what is the cause of some baffling responses. I've had friends bring me food, send cards, text wonderful things, etc, and others who have been outright cruel and/or dismissive or who have not returned phone calls, etc. DCIS is a very complex set of diseases. Some indolent, some aggressive. Some a mixture of low to intermediate. Some with comedo necrosis, some without. Some treat with BCS, some do the entire mastectomy. If the medical community, and the like are scratching their heads about it, can you imagine what others must think? I'm just playing devils advocate. I don't have time to explain the minutae of DCIS to most. Some people do " get it", some don't. I just say, stage 0, pre-invasive cancer if people ask. Some doctors are very concerned and treat it with due respect, others have waved me off and have actually said: " this is nothing". Right now, I can't waste the mental energy on everyone else. This is a time to be selfish. This is a time to set boundaries. This is a time to find out and weed out who our real friends are. Personally, I don't give a hoot who I offend at this stressful time. It is stressful TO ME..and right now, that's all that matters. Who ever likes it, likes it, who ever doesn't..? Tough. This is a wake up call, time to do you. You can't rationalize other people's actions. Reserve all your mental and physical energy for yourself. You'll need it. Godspeed.
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How sad that your friend spins this as you insulting her career. It sounds like she has made up her mind about how you should be feeling about your diagnosis and isn't hearing you and being a supportive friend. Some people aren't very empathetic and don't make it very safe to share with. What is going on in your life isn't about her career. It isn't about her at all. It is about your feelings about how DCIS has affected you. Not that you are the center of he universe, but if she is a good friend she should allow you to share your heart. You had or are going to have a BMX! That in of itself is a big deal.
I had a "friend" who was a nurse in a nearby hospital who worked with patients post mastectomy. She told me if I needed anything she was there for me. I shared how it was hard for me etc. to think about going through all this. She told me that at least I didn't have cancer and I would have better boobs than her because hers were saggy after breastfeeding and the boobs she sees are much perkier. Let's just say I didn't feel safe sharing with her anymore. She wasn't my best friend though ... which would make it definitely harder. But I guess hard life situations bring out people's true characters. Fair weather friends are easy to keep as long as the weather stays fair
A "good" friend of mine told me to surround myself with people that build me up and not tear me down when I was in the midst of diagnosis and surgery etc. Your main job is to take care of yourself and keep yourself healthy. You don't have to dump her but you have better things to focus your energy on right now
Best wishes. -
Good morning!! I don't want to share my negative incidents w/doctors, friends and family, but I too have had my share. I have had tears and anger concerning things that were said and tried to work through it as best I could. I too was terrified of my DCIS and did not understand a lot about it. It's been 2 years now and I still have my good days & bad and I do on occasions think about the scary word-reoccurance. One thing I have learned is that here on this forum is the best support group you will ever find!!!! These are the most amazing and phenomenal women and each and every one of them has a unique way of handling what has been thrown at them!!!! When you need to vent they are here, when you need to cry they are here, when you need a hug they are here, and even when you need a good laugh they are here for that too!!!!!!! I can truly say that I have never liked people so much I've never met, but here we are--together going through this and even though I don't post that often I read non-stop !!! So, please continue to stay with us and let us be your friends and support group as we all really enjoy helping each other with this devastating disease we've been handed!!!!!
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Sweetie, perhaps (playing devil's advocate here) your friend has seen so many cases of really advanced BC in her line of work that she was in her own (strange) way trying to tell you that you are not in that league so "chill" and she was trying to minimize your diagnosis by telling you "it's not even cancer" (the new/old argument in the medical world) so that you will not be so scared. Then when you questioned her motives, she felt as though you were attacking her profession which she is obviously very proud of and she went off the rails.
I think that she definitely has issues with being "wrong" in any way and has turned that out on you in a venomous attack that was not only awful, but not what good friends should ever do. I think whomever said in the post above that she needs some time is spot on. I would not let it go because she hurt you deeply, but letting it go for now might be best. Then, when the smoke clears and you have your wits about you and it is not so raw, you can calmly explain your side to her and she might realize that she was out of line big time.
DCIS is cancer that has only one little step to go before it can kill you. Bottom line, it is serious for sure. Did you get lucky? You won't know until it is all "in the dish" as they say but you definitely have landed on that more serious line of Grade 3 with necrosis. Hugs and know that we care and will be here for you no matter what. Hope your surgery goes well and that you indeed only have DCIS (the orphan of BC is what I like to call it...lol)
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Thanks so much ladies. Today has been the roughest day yet, not only because of what I am going through with her, but also because things are getting closer and I am just starting to really stress. My period is starting too so I am hoping that is part of it as that usually takes everything out of me itself! Reading your posts and having your support through all this means everything! I wish I could just fast forward to next week but then I guess it would just be someone else's turn. Got a prescription for Xanax, think I am going to pop one and just try to meditate through these next couple of days!!
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McKaylaleigh, these days are exactly why Xanax was invented. I also recommend some nice walks and a sweaty workout to calm the nerves and feel strong. Best wishes on your surgery! I found that, after finding the right pain meds that didn't make me feel nauseous, recovering from MX is almost easier than waiting to have one. Waiting is awful!
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I don't doubt that LAstar, my anxiety is doing a number on me right now. I had an appt with my gyn on Tues just to TALK and I about had a panic attack just being there (same hospital) knowing I was going to be right back there in less than a week for surgery. I do work out six days a week and I have been working out even harder because it is my therapy, but it's getting down to the last couple of days, it was Xanax time!!
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Awesome! You have a good core for getting up and down in bed. You will rock this!
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Oh uuuuuugh, I was so tired of the, "It's just DCIS." Well, it wasn't...and it was in the lymph nodes...with a ki67 score of 78...with extranodal extension...and I'm BRCA2 (only one in family with BC). But not a big deal, right? I went from having "precancer" to having a 30% chance of metastasis in 5 years.
I guarantee you are much more knowledgeable about breast cancer than your "educated" friend. Big hugs and prayers that it's "just" DCiS and that it stays in situ.
ETA - also not meant to scare! I knew all along it was invasive for whatever reason, so I found all the dismissals tough to swallow. Cancer is a big deal. At any stage, at any age.
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Cajunqueen, when you say you knew all along, was it just a feeling? I feel like I have that same feeling (I am a pretty intuitive person), but I don't know if it is me being intuitive or because mine is so large so I have just prepared mine for the worst.
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it was both a feeling and a result of the inordinate amount of research I had done. I had no lump but had comedonecrosis. I had an MRI and ultrasound, none of which concerned the doctors. But I knew "loss of fatty hilum" meant 90% chance of malignancy in lymph nodes. The surgeon said that the first thing I said out of surgery was, "I told you so." I don't remember that at all. I met with the medical oncologist who said he probably wouldn't see me again and I said, "You're wrong, I'll be back." When I came back he recommended the most aggressive chemo possible and I was not at all surprised.
I went for a second opinion and that Dr was so dismissive that I never went back to that facility.
Before my first ultrasound I knew I was having twins and told everyone that. Again everyone was dismissive. When you know your own body sometimes you just know. I was glad I was prepared for the worst case scenario. Which really wasn't the worst case scenario because I had a clean PET scan but still...
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My experience has been that in the world of cancer, you must be your own advocate. If you think something is needed, keep pushing. If nobody is listening, find somebody who will. When I was severely neutropenic during chemo and they kept trying to delay me, I kept pushing until they changed my dose and gave me what I wanted. Make your doctors explain things until you are satisfied. I wanted tumor markers to start right after chemo so I got my lab work printed before I left so I could request it. I'm not saying the doctors don't care, I think they do...but they aren't livng with this awful disease at 35!!! They also tend to follow insurance regs, but those can be flexible if your doctor uses the right wording and code. Many onco nurses are survivors too and willing to help.
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I totally agree. I have been my own advocate this whole time. I was a little blocked/limited by the military but I still informed myself with all I could and was even able to get a second opinion off base with one of the best BS in town. Unfortunately I was forced to still have my surgery on base but my 2nd opinion doc knows my base surgeon very well (actually taught her) and told me I am in very good hands. I haven't put a lot of thought into the after, I will see how my path reports come back and cross that bridge when I get there!
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Mckaylaleigh, I disagree with your friend. I know that doctors are currently trying to downplay DCIS, even to the point of not calling it cancer. Dr. Susan Love calls it " noninvasive precancer."
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Ductal Carcinoma in Situ (DCIS)
As more women have gotten mammograms on a regular basis, DCIS has been found far more often. DCIS is a noninvasive precancer. It is not life threatening. If you have DCIS, it means that you have abnormal cells in the lining of a duct. While virtually all invasive cancer begins as DCIS, not all DCIS will go on to become an invasive cancer. An invasive cancer is one that has the potential to metastasize (spread). Right now we have no way to determine which DCIS will go on to become invasive cancer and which will not. That's why doctors recommend DCIS be treated.
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So while your friend considers it no big deal, it is a big deal to you and you need to make treatment decisions that are right for you.
My mom had DCIS, had a lumpectomy, rads, and tamoxifen for 5 years. She did well. It was 17 years later she developed ILC in the other breast, but that was more due to her being BRCA2+. Is there breast, ovarian, or other cancers in your family history? If so, it's worth genetic counseling and genetic testing.
Best wishes on your surgery. You may want to check out some of the surgery boards (January and February 2016 to see how people do through surgery). Also the reconstruction boards (TE primer, Breast Implant Sizing, and Exchange City) are helpful if you're doing reconstruction.
love, Mominator
Edited to remove Stage I statistics, which do not apply to DCIS.
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IMO you need some space from her. Time away will give you some perspective on whether or not you want to continue the friendship. The bottom line is this is about you not her and she is not being supportive. We learn who are real friends are during good times and bad. I don't want to sound cynical but its really hard to find a good friend. You need all the energy you have for surgery. BMX is no walk in the park. For that reason alone she should be there for you. Forget about the DCIS issue. Good luck and keep us posted.....
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Mckaylaleigh was scheduled for surgery this morning, Monday, March 7. Sending positive thoughts her way for the best possible pathology results and a speedy recovery.
BarredOwl
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Mckaylaleigh, I hope your surgery went well and you are resting and recovering.
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Mckaylaleigh, I, too, am thinking of you - sending positive thoughts that your doctors got all of the cancer OUT during surgery and hoping you know you have friends here.
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Thanks all. Everything went well for the most part, home resting now. Just still very groggy. Pain is very manageable and looking forward to shower later! Right now I think I am going to lay back down!
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Happy to hear that it went well. Rest is what you need right now so glad you are doing that. Hugs!
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Sending hugs and best wishes for a smooth recovery!
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