Lumpectomy Lounge....let's talk!
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Molliefish - that is so cool to MISS an anniversary date. Life does go on and we are not defined by cancer. I look forward to my MISSING my anniversary date one day. You brought a big smile to me today. Thank you.
Tappermom - leading up to my having my mamm. that brought me the news of my BC. I had this unusually high amount of women that were being diagnosed with BC. Lumpectomies and Bilaterials or second round of a lumpectomy. Along with several other cancers diagnosed with coworkers and neighbors. All within a month. And if it wasn't the close contacts, the conversation of BC seemed to be on the lips of people I just met. I had no symptoms, nothing to alert me that I had BC but I will admit the news was not as shocking to me as if the news of others somehow prepared me. In fact, I think the radiologist and nurse seemed more concerned that I showed no reaction and was already of the mindset of well lets get this treated. And to top if off my friend of over 30 years was diagnosed with lung cancer the same week that I got news of my BC. My dear friend and I feel certain it was meant that we take the challenge on together.
You mentioned people you know keeping the news low key. I still have been selective in my sharing. Mostly from those that use the info more for drama talk and would not be so focused on the realness. But I am also driven to be very vocal. As women we should have the conversation with one another and not be so quiet. We should make it a point of saying to our family and friends, I care for you so much that I WANT YOU to get your yearly mammogram. Some of my best gifts this year have been several women reporting back to me that they DID go get their mammogram or that they made the appt.
Today is a good day and bless all you wonderful ladies!
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Yay, Mollie! Woohoo!!
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I agree with Gardenerd. When we share our diagnosis we can encourage others to get their mammos. I know I got several friends moving. Even my surgeon husband couldn't feel the lump but I am HER2 and am really grateful I hadn't put off my annual. Things could have been so much more serious.
I would also say that I have had nothing but support from my openness (other than the woman who told me to just drink lemon juice!) but I know that hasn't been everyone's experience. It has also made me comfortable to go bare headed or wear scarves rather than deal with a wig - it's already over 100 here in Phoenix and I play golf.
Hope everyone is having a good weekend focusing on family and friends rather than the big C.
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I agree also, Taco and Gardennerd. In fact, it was a friend who is just celebrating five years who lit a fire under me to get my screening mammo. My only problem has been feeling the need to reassure everyone that I'm OK. I tend to downplay my situation, which is actually very good!
MJ
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Congrats, Mollie!
Gardennerd, when I got my first abnormal routine mammo report, I was in game-plan mode. I think the most stressful time for me was the two weeks between ultrasound and the day after my biopsy, when I got my results. The “what if”s were worse for me than my reaction to being diagnosed, and the knowledge that I had my treatments mapped out (combined with the authoritative reading I’d done) kept me from falling apart. I strongly suspect that for those of us over 60, it comes as less of a shock than it does for those not yet menopausal, and especially for those diagnosed in their 30s. (I’d have been a wreck were I 34 or even 44 instead of 64). We “oldies” pretty much expect that we are entering the stage of life during which serious, even life-threatening, stuff rears its ugly head.
Velvet, I hadn’t thought of getting genetic counseling/testing because I had no first-or-second-degree relatives with cancer—those who had cancers of any kind weren’t full-blood relatives, and none of them had the kinds of cancers associated with known genetic mutations. But while I was waiting for surgical path results and my first MO appointment, I was reading Dr. Susan Love’s “breast bible” and was surprised to see that anyone already diagnosed with breast cancer who has Ashkenazi Jewish heritage ought to get tested for the BRCA & PALB 2 mutations. I am Ashkenazi on both sides. When I mentioned that to my MO, she immediately picked up the phone and made a genetic counseling appointment for me. (Most insurers and health systems require counseling before testing). Fortunately, I’m negative for the mutations.
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When I was diagnosed with BC, I pushed hard with the women I worked with to get their mammograms.
There weren't any excuses I would accept. I heard all of these excuses.
There's no BC history in my family. Mine neither; I am the first as far as I know.
I did it for years and never had a bad mammo, I'm wasting my time. Me, too. Twenty years of clean mammograms...then THE ONE.
They hurt. Not that much.
What if they think they see something and I have a biopsy and it's nothing? That's a lot of pain for nothing. What if they think they see something and you have a biopsy and it isn't nothing?
I had a lumpectomy ten years ago, I'm fine. Are you sure?
I just don't want to know. What about your family? Your daughters and, yes, your sons?
My breasts are small, I probably don't have to worry like you do. Not true. Just being a woman AND having breasts puts you at risk.
I breast-fed my babies. So did I.
I was able to get ten of the twelve women in my department to schedule and go for their mammograms that first year. I hope they are keeping it up.
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Sandy - you brought up an important point about age and BC. I certainly have a different view as I get older. A side story is that my DH and I were discussing retirement plans last year. My DH regarding our finances and plans seemed to go at it with the idea we'll always have money and/or time and health wasn't a concern either. So I am the realistic one and DH is the dreamer. I'm a dreamer also but darn it someone has to be the grown up. So he was on a roll of discussing of what we were going to do, buy, when we retired etc. etc.. The plans, his plans would have carried us into our being 100+ years of age. I finally just asked, "do you realize we only have 20 years left?" (granted it was just a number). He paused with this blank look, so I repeated myself, "we only have 20 years left!" From that conversation he has curtailed (a bit) his thoughts on how we will proceed into retirement. But the diagnosis this year of my BC. It was as if he was hit with a mack truck. He was the 34 year old that just found out she had BC. His prospective of the future changed. But you are SO right, when we are younger, we don't see time ticking away . . . when you are younger, we always have time. Which is why us older gals need to get the word out to our younger women friends and family the importance for check ups.
VelvetPoppy- oh my Gosh! I've said many of those same excuses myself. I stopped for five years and then the sixth year the mammo showed cancer. The oncologist asked me why did I go this time when the doctor gave me my yearly checkup. And it was a simple change in how she handled it this time. Instead of saying here is your referral, she said let me make the appointment. Seriously that was the only reason why I went this time. I truly believe had she gave me the referral for me to make the appt. myself, I would not had. And my excuse would have been one on your list.
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Had my follow up last week - received very good news - no cancer found in breast tissue or lymph nodes!! So very grateful and relieved!! Incisions are healing well. Still sore and having trouble getting comfy to sleep, but definitely better each day. I was told I will have my next mammogram 6 months after I complete radiation, will see BSO every 3 months for 2 years and then every 6 months for 3 years. I meet with RO in 1 1/2 weeks. Been a crazy week as all 3 kiddos came home and we have been nonstop, plus our septic tank has decided to act up so doing laundry for 5 at the laundry mat. One tired momma
. I was told that I would not be able to swim once I start radiation due to the chlorine - is this true???? I was really bummed to hear that as it is summer and we spend lots of time at the pool. My kiddos are all great swimmers, but my oldest has Down Syndrome and likes me to get in with her, which I enjoy. Not happy with that news. Also, we were thinking of planning a quick little trip, maybe to a waterpark, before I start radiation. Would I be crazy to do those rides, etc? I would be 3 weeks out of surgery - I think I know the answer. Just sad it is summer and Mom is messing it all up. Guess I need someone to talk some common sense into me. Also, when did most of you return to your regular bras? SJI - love that sweet pic - so thankful we lift one another up.
LoungeKat - welcome and always sorry any of us are here. Yes - I have found people respond "oh - you just had to have a LX". Never mind I have a Grade 3 tumor and Oncotype DX of 35. I have to remind myself that unless you have traveled this road, you just have no idea - I didn't either until I was here.
Gardennerd - so happy for you that you were able to sleep in your bed! I just told a friend that I can not wait to be able to curl up in my bed and sleep.
Sandy - the lymphedema therapist gave me several exercises - one of which is wall walks. Are you saying I should not do? I have been doing twice a day - hope I am not causing harm.
Robin - Biotene was a lifesaver during chemo for dry mouth!!! I used the mouth rinse, toothpaste, and spray. I kept a spray in my purse and one by my bed to use in the middle of the night.
Kim- Did you start chemo this past Friday or next Friday. Big hugs and prayers your way. How is your port feeling? Yes - get the Biotene!! LIfesaver. Keep a spray by your bed for the middle of the night. It is unbelievable how dried out everything gets. Skin included. I have always had oily skin and my skin was so dry. A good moisturizer is a must. I have numbness under armpit and yes - my nipple feels like I have been nursing for too long. I have not felt around very much either.
Skelly - welcome and sorry any of us have to be here. great group of ladies here!
KB870 - wonderful news! celebrate!
Barbmak - 2 1/2 weeks since mine so not too far ahead of you. we will get there!
Mollie - great thing to forget!!
Hope everyone is having a wonderful weekend!!!
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Nope, ML—au contraire, I should have continued doing the wall walks, because the original NP’s warning that they could cause cording was all wet (maybe that’s why my BS switched NPs?). My LE PT had me resume them, and my trainer has me end every cardio session with them.
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Sandy - great - I shall continue them then. I feel so much better after I do the exercises she has given. She will see me once a week during radiation.
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ChiSandy I had my surgery back in May. I have been getting this pain in my right arm that is killing me. I thought I pulled a muscle at first. I told my BS about it at the FU visit. She said it would go away on its own just give it time. Anytime i extend my arm It feels as if my muscles on my forearm are curling back into a ball. Feels as if muscles are pulling off the bone! I went to scratch my upper back with that arm and the pain from the back of my elbow to my shoulder was incredible. I heard you mention cording so I looked it up and it describes me to a Tee! What exercises should I be doing and will it go away? Should the BS have referred me to a therapist?
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Susie2017 - I am sorry you are having pain. My BSO has a lymphedema therapist in his office that he has his patients meet with. I see her each time I see him. I had my surgery on 5/23. She has given me exercises to do twice a day to stretch everything out, prevent scar tissue, restore the nerves, prevent lymphedema etc. You can google exercises to do after a LX and can see how to do wall walks etc. I believe it was MD Anderson that had very thorough explanations. I have the handouts, but wanted to see videos as I forgot how to do some of the exercises. Hope things get to feeling better soon for you. I would definitely let your dr know and see if you may need some therapy.
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ML1209 should i use heat? I have no swelling just cant extend my arm to the fullest. I've been compensating with my shoulder but I feel as if I'm going to have problems with that if I don't correct the problem now.
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Susie - I honestly do not know. Have you seen a lymphedema therapist or PT? Hopefully Sandy can advise since she has dealt with this. Maybe your MO can help. I am so sorry I am no help.
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Susie, I wouldn’t do anything DIY to treat your arm pain until an LE specialist or LE-qualified PT or OT can confirm a diagnosis of cording or even LE. It could also be referred pain from a neuropathy, caused by nerves that might have been cut during the surgery or sentinel node biopsy. But I would use neither ice nor heat (which could actually aggravate LE) without getting a consultation first. The wall-walks wouldn’t hurt, but without therapy they might not help either. It does sound that the most likely explanation is cording. But it’s awfully soon after surgery for that to have developed—mine didn’t appear until a week and a half after I finished radiation.
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ML1209 I have not seen a therapist yet. You have helped just by listening and answering back. It means a lot, thank you.
ChiSandy When I saw the BS she said that the pain was probably from surgery and gave me Ibuprofen to take. So let's hope that is what it is. I will do wall walks and avoid heat. I'm glad to know if it's cording it wouldn't happen that fast. So that is a bit of relief. Thank you!
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Susie - I am about a week and a half behind you as far as surgery and have had nothing like what you are describing. It sounds painful. Keep asking your drs. I see you start chemo soon - hopefully you can get it figured out before then. I finished chemo in April. Crazy journey we are on. I checked again and both MD Anderson and Memorial Sloan Kettering have great youtube vidoes on the exercises to do post surgery. It has really helped with getting my ROM back in my arm. Praying this can be resolved quickly.
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Poodles, while not exactly what is going on with your mother, I still thought of you when Facebook reminded me I had posted this a few years ago.
HUGS!
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Susie2017- if it is cording you can usually see "the cords" when you reach or stretch your arm out. I'm seeing a PT now who is certified in lymphedema treatment. It's so worth my time! I feel like I'm getting a massage once a week! I popped a few of my cords (my educational background is OT) myself but there were a few I just could not do. I tried to get my DH to pop them for me but he wouldn't he was afraid he would hurt me. I definitely do not recommend you try to do it yourself. I really shouldn't have myself but the COTA in me couldn't help myself. The PT has me in a compression sleeve to. She suggested when I'm busy wear it. Which with a multiple a handicap child and 6 grandchildren I'm always busy. Knowing I do alot of lifting I also have a compression sleeve that I wear at night while I sleep. It's very comfortable so I do not mind wearing it. My PT also does cupping at my appointment and it feels so good. I'm not sure how they determine who a good candidate for cupping. It has my surgery scat so soft and loose. I can now sleep with out a bra because the weight of my breast isn't pulling on the scar.
Hope you get to the source of your pain soon!
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Poodles, prayers for you and your family, know what you're going through and although we would never wish it on anyone, it happens to the best...
Mellange.. Congratulations on your mammo... I have mine this month, and praying it's just as good
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ML, WONDERFUL! So glad for this news today!! I got in my regular bra one exact week after my LX-before I left BS office! Interesting that some feel better than others certain days, but since I have had the port placed, my right side feels like nothing compared to the new bruising on the left. Ha. I will say today is a better day. Whew! And chemo starts this Friday, the 16th, at 1pm. I will add that to my growing signature. Definitely am getting all the acoutrement in place to eliminate any and all SEs. 🙏
I was not given any exercises to do, but thankfully, I had no issues. In fact my myofacial pain in the right arm has been greatly reduced. I wonder if that is due to my focus on other pains? For whatever reason, I am glad for that!
Susie, I will be a week ahead of you with my chemo. You can bet I will let you know how I'm doing. I am ready to get this show on the road. I pray you can get your arm issues better before you start.
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Thank you for the love and prayers. Mother is very low today. We think she had a small stroke yesterday. Today is not moving, not talking, not drinking. Can't get a good deep breath despite 5L oxygen, CPAP, and a wedge. Afraid when she's awake. Hospice is trying to get some Ativan to dissolve under her tongue.
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mustlove, I pray she will not be afraid and can have peace, as can you. Both of my in-laws have Alzheimer's. It is a difficult disease for caregivers and families, not to mention the patient themselves. May all you need at this time be provided to your family. 🙏
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mustlove - prayers for you and your family.
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Thank you Kim and Celia and Peggy. Mother has stage 4 kidney and liver cancer, plus stage 5 kidney failure. Thankfully, She is not in any pain and she is still lucid when she's aeake. But she doesn't want to be moved, touched, or talked to, so we're just staying nearby.
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well ladies here I am 😐 My cancer was discovered in April, thanks to my GP telling her nurse to make an appointment Since it was over 5 yrs since my last mammogram. Had a LX May 25 with 8 Lymph nodes removed and cancer found in 7 . Next week tons of test being scheduled, thankfully all being scheduled by the Cancer team. I have to see my cardiologist for an echo and get a bone and full body scan. Just to make life really interesting I need to have my AICD replaced. (That is an internal defibrillator.) within the next 2 mos ! I am trying to stay calm but when I am alone it gets to me.... Glad I found this site .. On the 21st I will get the results of all my test and see where we go from here. I think I am at stage 1-2 and grade 4 ...? Is that bad not sure we have to wait and see if it is anywhere else. Got my fingers and toes crossed. Thank for listening to me.
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Poodles, aw gee, I'm so sorry. Hope your mom can be made comfortable.
KittyM, Welcome! We're sorry you have to be here but this is the best group ever. Sounds like you are riding quite the whirlwind right now. Glad that the cancer center is handling all the scheduling. You might want to read Dr Susan Love's Breast Book. That should give you tons of information which most of us were lacking when we started our journey. We all have had this "get" to us. It's overwhelming. Whatever treatments you need, you will find they are doable, not easy, but you'll manage. Also, please fill out your profile as completely as you can, then go to the SETTINGS (in the upper right corner) and make each and every single thing PUBLIC. That way it will show up after every post and remind us of what your particulars are and tell us where you live - it's possible we are nearby.
HUGS!
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kitty, Hang in there! Sorry you've had to join us, but you've come to a very supportive place. Try your best not to worry about stages and grades at this point, as my expected ones changed quite quickly. Take it a step at a time and write down all the questions that come to you. Sounds like your team is on top of things. Deep breaths. Prayers for peace and calm as you await results after testing. You are not alone.
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Poodles, prayers for you and your family
Kittym, welcome! Sorry you have to be here, but this is the best place for support and encouragement. This journey is full of twists and turns until you get your treatment plan figured out. The waiting is the worst. Try to stay busy so your mind doesn't go to dark places. Just remember, as Peggy said, it's all doable. Sending prayers and positive thoughts to you.
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Poodles - prayers for you and your family.
Kittym - so very sorry you have to be here. The beginning is the hardest as there are so many unknowns and so much waiting. Once you have all of your test results and a plan, it gets a little better. We are here for you.
Kim- I remember the bruising from the port - ugh. So sorry. I understand about getting it all started so we can get it over with. Did they tell you to use plastic utensils to help with the metal taste? It really does help
. My prayers will be with you on Friday at 1:00! Peggy and Gardennerd - thank you for helping with the signature. I finally got it .... I think anyways
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