Lumpectomy Lounge....let's talk!
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huh, Peggy, I think when it comes to sharing I might be your mirror image/opposite!
Early this year, after about six months of seeing all sorts of specialists and having every eye test you could imagine, I was diagnosed with a retinal injury. I have permanent and partial blindness in one eye, and it will never get better (at least not until they perfect an artificial retina in ten or twenty years; in fact my retinal doc wants to see me every year or so just to keep tabs on me in case the technology does change :-)). However, it will also not likely get any worse. So, after months of testing (with all sorts of scary stuff on the table) basically I was told, 'sorry, it is what it is; nothing we can do, learn to live with it.'
And I have. It doesn't have a huge impact on my quality of life, and I've been able to adjust in the areas where it does have an impact. My first question to doc after diagnosis: 'Can I still scuba dive?" Doc: "of course" Me: "Good, because I was going to do it anyway" :-) But of course, the questions I had for my doc after the bc dx had nothing to do with diving...
The entire time I was trying to get a diagnosis on my eye, I told everyone at work and all of my family and friends the blow by blow description: of which docs I liked, which were useless, what they had eliminated as causes, what tests I had had...everyone at work knew every detail and all the frustration of trying to have a rare type of medical situation diagnosed in a small town (not surprisingly, I had to travel to a major teaching hospital several hours away to finally get the tests I needed and the diagnosis).
but otoh, even though breast cancer is much more common (or possibly because it is?) and even though I have several colleagues who have had bc (or possibly because I do?) I have told almost no one at work. My boss, my most senior direct report, one friend. That's it. All the rest of my staff and all of the rest of my colleagues know only that I am out for surgery. They obviously want to know: I've been asked questions like, 'Are you ok? Will everything be ok?' I've just said, "I am fine, thanks for asking". What the hell I will do if I have chemo and lose my hair I don't know.
I've also told only my immediate family (hubby and adult kids), my sisters, my stepmom, just a very few close friends. My father has dementia and barely recognizes me (he is 91 and in assisted living so I haven't seen the point of telling him. Nor have I told my full circle of friends...
It just feels private to me. Possibly because it is a life threatening disease. I can handle people thinking of me as partially disabled (having a blind spot, for example), but I just simply don't want them to think of me as anything other than fully alive. I admire those who can be open about it, but even though I ordinarily am not a private person, this feels private. In that regard, even though I sometimes worry that some friend will accidentally find me on here and recognize my 'voice', I am SO glad I have you, my sisters, who really understand, as support! Hugs to all of you!
Octo
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Ringelle: if your gut is telling you there is something in the left breast, I'd listen. I am a big believer in science and medicine, but I also believe in listening to gut instincts.
About four or five months before I felt the lump in my breast, I had some vague but present breast pain. I kept thinking something was wrong. Of course, the internet told me that bc was usually painless, so I told my self I was being ridiculous. Until I found the lump, then I called my GP the next day! (and the lump was painful.) Actually, I had vague feelings that something was wrong with my body as long as six months ago, but all the stuff I was going through related to my vision issues made it easy to ignore those feelings on the assumption that 1.) yes, something was wrong with me, namely my vision and 2.) they were testing for all sort of stuff and I figured they would catch any serious problems. It might not have been a bad idea for me to listen to the gut feeling that 'something wasn't right'.
xox
Octo
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Octogirl, if I were working (I'm retired) and in a larger office, I wouldn't share either. For all but 2 of my last 25 working years, I was in a very small family company and I would have told them. the last 2 years I was in a huge company and I would have told only my boss most likely. Being retired makes my "contact list" much smaller. I think you're absolutely right not to tell the whole world - yours is large, mine is small. And what was right for me in my particular situation is probably not right for you in your particular situation. And it's always possible that down the road you may feel differently or not.
Listening to your body is always smart. What hurt in my breast wasn't where the BC was but the BC was found because my breast did hurt.
HUGS!!!
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i have told everyone. But I work with scientists, many of whom worked in oncology for years. And I work in HR and have been helping people navigate their bc. Felt a little weird to not share when I got bc. I'm gone every friday, and I wanted people to know it was because I was sick, not because I felt like taking Fridays off all summer. But I'm not a very private person.
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Yes, I think we all have to do what is right for us, and Peggy you are right that the fact that I work for a large employer (one of the larger, if not the largest in my county) is definitely part of it. OTOH, I also work with many, many scientists, some of whom do bc research, and I still don't want to tell some of those colleagues and co-workers. Not sure why but yet one more example as to why we all have to listen to those inner voices and do what is right for us. Not that we should reject science or informed decision making, mind you, but still: what I want is to get all of the information, know that my treatment team have access to the latest science, inform me as to my options drawing upon that evidence base, and then respect that ultimately it is my decision and my body...and while I am going through the process, I don't want other co-workers giving me their opinions. You ladies, otoh, can do so! :-)
Well, it is dinner time here in California. Roast chicken, roast potatoes, broccoli. May not be ideal to have run my oven this afternoon, but I am looking forward to the comfort food!
Have a good night, all.
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Ringelle,
Listen to your gut. I knew something was up with me because I had breast pain for months until the lump showed up. I called and got the referral for the mamo but for some reason didn't tell them about the lump or the pain. I knew when I left they would be calling me back for an ultrasound and they di that same afternoon. When the radiologist wanted to do a biopsy on the spot I knew it was cancer. When I had surgery Wednesday I knew my lymph nodes would be positive because I had the same pain in the axillary area. I am glad I didn't get scared enough to put anything off but I was scared enough to not say what I was sensing in my body.
I don't have young children but I know my 22 year old daughter is scared for me. You just need to do what is right for you and get some counseling for your daughter. Sending hugs your way.
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Hi Y'all! Brief (ha..for me that is) update: I got an earlier (by 1 hr) connecting flight out of Atlanta last night, so arrived at airport before midnight! Because of the standby status, sat in a different row from my son--but next to a very weird and large fidgety guy--that's another story--but I opened my phone and got somewhat caught up on the more recent posts. Gosh, I glad it was a night flight as my tears were once again streaming, BUT
There are so many things I want to say, and to respond to the great discussion now, but will have to wait until I am a bit more awake. I really wanted everyone to know that #1, after writing my pity party post on Sat and reading (reaping) all of your love, I felt better. I mean REALLY better. Just getting it off my chest (no pun? hum), being validated, feeling understood and supported....it all added up to an amazing amount of relief for me on the last day of the swim meet. Still very stressful, yes, but it was doable because I was no longer alone. YOU, my dear Lx sisters, helped so so much. THANK YOU for being so kind and patient with me.
We got home and to sleep around 1am and up again at 6am. I hadn't received any emails about my Her2 results status so prepared for the 50-min drive to the MO appt this am. Needless to say, I got a call while on the road from the MO's assistant who told me that the results were still out, so the appt was once again cancelled. I pulled over, cried, considered which fast food place to try for "breakfast", went to my office and waited for my afternoon clients. Now I am home and have a million things to contribute to the conversations with Ringelle and everyone (after I nap).
Gosh, I love typing on my laptop instead of my phone. I digress. Ringelle, I concur with others about listening to your gut.
Will write later. love y'all, sweetmamaj
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Octogirl ,like you, I told only my inner circle. For some reason it felt vey private to me also. I process things better on my own and didn't want to have to make others feel better about my BC. I didn't want questions I didn't yet have answers too. It was impossible to keep others from talking....so I did have people find out from other sources. Luckily it was after all my treatments were finished and I could assure them I was fine. It was just easier for me this way. I found comfort in these boards because unless you've walked the road you really don't understand...and that's ok. I think that's why those of us who have been there really want to help those who are just beginning. ((Hugs))
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so glad you are home sweetmamaj but that SUCKS about results still out. I write this from the MO waiting room so more later
Big hugs to all of you
Octo
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Hi all- I got my path results. All good. Clear margins, no lymph node, no LVI. The only tiny hitch in the giddy up that was surprising I guess was my ER/PR. er 90% moderate to weak stain PR 100% strongly stained. I guess it is more common to have er stronger than PR. Anyone know anything about that? So because of that he had me choose if I wanted to order oncotype DX. He puts my odds at 95% no chemo but I think better to have the hard data. So another couple weeks. I think the waiting never ends. Ugh!0
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Plumster I have decided to have the onco dx test done for my peace of mind! I couldn't live with myself if something surprised me later. Great news on the clear margins and no node involvement!0
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Plumster, good call. I'm with 123JustMe, I'd rather have the hard data to make a decision than just sail along and miss the boat. I'd certainly have done chemo without a second thought if the oncotype had come back with a number indicating it. But nice to have a number saying it isn't necessary.
Plumster, congrats on the fantastic path report! Now BREATHE!!!
HUGS!
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plumster, congratulations on a great path report! Sweetmamaj, sorry you didn't get the results yet. I see my surgeon tomorrow. Not sure if my pathology will be in yet but at least I will get the darn drain out. I am a bit anxious not knowing if the positive slnb will change the plan to include chemo. I don't know when I will see my MO.
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Yay!! Plumster...so happy for your good news. 👍😀
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Molly, did you have a positive node? Your profile indicates negative.
HUGS!!!
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I did, yes. She did alnd so I am waiting for the biopsy on those as well. I haven't updated my profile because it asks how many removed and I have no idea.
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Molly, I was looking at the wrong profile when I asked. Hope you don't need chemo. But if you do, keep in mind what it (and all your treatments) are doing: KILLING CANCER!! That may help you get through whatever happens.
Good luck tomorrow and let us know what you find out. I'm in your pocket dancing around (don't laugh - I know I can't dance)!
HUGS!!
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30 minutes around the lake walking today. Feels good to be back at it in a structured way. My weekend was a bit busy and a little active but I like "knowing" I got in my 30 minutes! To a good active week for us all.
SORRY I must go to bed...looks like I posted this on the wrong thread!
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plumster: great news on the path report! Yay! I know it is hard to wait for the oncotype but I agree with the others that it will probably be best for your piece of mind...
so got back not too long ago from my MO apt: we didn't get out of there until after four and then it is a long ride home...
The good news: he did order the oncotype (yay!, I really wanted that)...and the chemo or no chemo decision will come down to that score, probably. Of course, more waiting. We probably won't have results for two weeks yet. He set a follow up apt in two weeks but asked me to call before driving all the way there for that apt to be sure the results were availabe. Also, I liked both him and the nurse practitioner, who spent quite a bit of time taking a complete medical history, going over path report, etc. They both took their time and made sure all of my questions (and hubby's) were answered. So, at least for now, I am good with sticking with him.
The office was well organized (contrary to my phone impression)...so that was good.
The only not so great news: MO isn't totally happy with how one of my incisions (the one where the nipple was) is healing. It does seem a bit more bruised to me than it has been. Unfortunately, my bs is out of town, particularly unfortunate since her office is just across the street from his office and I could have just run over there for her to have a look (which would have been his preference). So, he asked me to put saline solution on it twice a day, keep gauze on it, and thinks bs should look at it next week when she is back. He asked me to call if it looks any worse between now and then so I can see her backup, and of course if I start to run a fever..Part of the concern of course, is that assuming I go the Rad route, they can't start that until the breast is healed. He basically said he didn't think it was a major concern, but he obviously was a little concerned about it. My worry is that I am heading out of town for the weekend (big family wedding, fun stuff), so hopefully it will all be fine. Sigh. More crud to deal with. Oh well, at least he is paying attention.
Anyway, I am worn out from everything and tomorrow is my first day back at work, so think I will head to bed early.
Thanks as always for listening!
Octo
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Reader425, good for you! Walking does do amazing things.
Octogirl, glad your appointment was so good. Especially considering how incompetent the office staff had seemed. Sounds like your MO is the right one for you. Sorry that your incision isn't healing well. That is worrisome. Does it hurt? I had my Lx last year on July 23 and started rads after Labor Day. You should be fine by then!
Good luck tomorrow!
HUGS!!
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Peggy, thank you for being such an encouragement. Octogirl, I am glad you liked the MO. I hope you heal quickly.
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I try, Molly50. We all need encouraging words. This is such a crappy journey. I know I appreciate(d) the real and virtual hugs I've gotten. Made a huge difference.
HUGS!!
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Thanks Peggy...everyone I met with today was very nice and helpful and respectful. Of course, I didn't meet the person I dealt with on the phone.....I didn't bring it up only because everyone was respectful and helpful and because the place is well organized. Going to keep an eye on it, however
The incision doesn't really hurt but my breast is a little sore. We did the saline thing tonight, with hubby playing nurse, and that actually felt soothing. Hopefully, will indeed be fine.
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Octogirl, You have to be relieved that the office and MO are so much better than you expected. Well, if that saline thing is soothing, it has to be working! Hard to wait for that damn oncotype result.
HUGS!!!
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Thank you everyone for all the positive comments! Octogirl, relieved for you that all seemed well with this MO. Guess we and 123justme are all on oncotype watch
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Quick catch up: Plumster, thank you for your encouragement and support, it made me cry (good tears)--Hugs back! And I am so happy to hear your great path report! Yea! Sorry I can't help much with interpreting the staining data...I've been driving myself crazy with scientific journal articles analyzing and recommending different protocols when the Her2 results come back equivocal.... But I'm right there with you in the waiting room! More hugs!
Pontiac: Thank you for many great ideas as always!! More Hugs back!
Horsegirl: Thank you for such nice words of encouragement. But regarding my user name, my DH gave it to me decades ago when we were dating and wanted to start a Blues band (him on the guitar, and I would play the blues cello-never happened). Anyway, he thought sweetmamaj was a good stage name for me and it stuck. And your ice cream idea made me smile! Hugs back!
Octotwin: I loved the image of y'all in the stands and on the plane (instead of that strange guy) with me! thank you and more Hugs back!
Sailorbev: Thank you also! My son gave me a card last week and wrote: "I'm glad I get to call you my mom" I am so lucky to have him. And y'all as well! Hugs back!
Ringelle: I didn't know you were a swimmer! Astute and absolutely correct-you're preaching to the choir, as they say in the South. I've said everything like that to him on countless occasions, and it was so good to hear it as a reminder and something to help ground me. Regarding a decision to tell others about BC, I think it's an individual choice--there are so many factors involved, and those factors constantly change!
When I talked with my son about cancer, I encouraged him to share the news with a few close friends but also told him that teens--and adults--often do not know how to handle that type of information and may not know what to say. That silence or a "wow, dude" does not mean his friend doesn't care, but is just trying to process and how my son can come up with a quick "thanks, I think she's doing ok right now" or something like that. Still, he chose not to say anything except to One friend who lives in another town.
Octogirl, I'm right there with you, being partially blind (my glaucoma is actually my Aunt Sohpie), elderly parent with dementia, etc. Yet I wonder if I am trying to protect my mom "because children are not suppose to die before their parents". Not that I'm expecting that to happen, but the thought of my mom thinking that, gave me pause. But regardless of if I'm just being selfish by taking away my mom's right to feel however she chooses to feel just so I won't have to feel bad, and therefore allowing myself the allusion of control in a situation where I have no control over cancer (how's that for psychoanalysis-lol), or if I'm just processing this s*** one day at a time, is all relative. Situations change, we change, our prognosis might change. I think our "woman's intuition" is real and powerful, and something that can guide us through these many challenges, whether a decision to tell coworkers, or an uneasy feeling about a lump in our breasts.
I agree with Tresjoli that a counselor might be a great idea for your little girl. A registered art therapist is also a good resource for children. National Cancer Institute has free books to help children and teens deal with their parent's diagnosis of cancer. You can download them, but I chose to order a hard copy of the teen booklet for my son--just so he can thumb through it at his leisure and not be distracted by the popups of multiple notifications on his laptop.
I am so sorry to hear about your last Lx results
. I still did not get a chance to read the older posts from the week of July 24th! Your 2nd surgery was that day and it must have been tough to go through it when your heart was telling you that it was a waste of time! Yes, as others indicated, whatever you decide, we are here to fully support you! Make as much of an informed decision as possible, listen to your instincts, and know that we love you and are here. If essential oils help you feel better, than more power to you! Many Hugs!! I think the CDC classifies "aromatherapy "in the Complementary and Alternative Medicine or Therapy department. I wanted to bring my small scented candle on our last trip, but am afraid to light a match in a hotel room. Octogirl: it sounds like you are also in the waiting room with me and Plumster! I apologize if my responses seem random--I have a hard time catching up on all the news and actually have been working on this post for a couple of hours! Glad about the oncotype and very glad about the new MO!!!
Take care of that incision and have a wonderful time at the wedding! On that lighter thought, I can make some jokes at the thought of us walking down the street, me blind in one eye, you in the other, my lumpy L breast, your lumpy R one, looking for a stiff martini because the visibility was poor on our last dive...Molly: many gentle hugs to you! Even if your path report is not back tomorrow, you can get the drain out and ask your BS questions about healing, how many nodes, etc. I will be thinking about you and sending positive thoughts. Please write when you can.
sweetmamaj out
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sweetmamaj, your name fits you so well. What a blessing to walk this path with you ladies. I haven't even really processed the idea that I have cancer. I thought surgery would make it real but I am still in this surreal state of mind. I will update tomorrow. I took a percocet for my sore leftie and need to sleep.
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Molly, I think the processing takes on many stages and we only process what we can, when we can (if that makes any sense). Take care of that L girl--sleep on the R one tonight, and sweet dreams to you. xoxo,
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Molly50, SweetMamaJ is so right. We allow ourselves to process this information when we can. I was dealing with my very debilitated DH, caring for him with no help when I was diagnosed. Everything about my cancer seemed to be happening on the periphery of my life. I was concentrating so hard on his care. Needless to say I was exhausted from it (4 years x 24/7). When my kids came to stay when I had my surgery, they were the ones taking care of their father. They hadn't known how difficult it was and I was able to sleep all night. Then they left. I started radiation. DH had surgery and has not been home since. I just couldn't care for him anymore and after he left the hospital (he contracted pneumonia), went to rehab and then I had him admitted to a nursing home. By that time, I was done with radiation and on my way to a "normal" life. There just wasn't time to process I had BC. And now that I do have the time, it's almost a non-issue. I take my Arimidex every morning and live. It is all so strange! So don't worry about not processing it.
HUGS!
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Sweetmamaj sorry about more waiting (we never get used to that :0(
Molly hope you are staying cool and comfortable.
plunmster, My MO indicated it was the % er that mattered and that the staining wasn't really an issue as long as % was high. I know they all have their opinions but get the oncotype for sure if it gives you peace of mind. FWIW my stats are very similar to yours and my er/pr were both 25% each (weak-mod stain) my oncotype was 23. I was worried about the weak staining as well.
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