2012 sisters
Comments
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hi--first post and looking for help/advise from what looks like some really smart courageous sisters----Got oncotype score two days ago---it was 18 and the doctor just says I am "on the line " and it is up to me. I am tortured trying to decide. Had no issue deciding double MX but the decidon on chemo or no chemo is making me crazy. Part of me wants to do EVERYTHING i can to get rid of this but part of me knows chemo is poison and can't imagine putting it in my body when no one is sure its gonna make a difference. thoughts?
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Hi Chitown 3,
Looks like we are very similar in dx. I had lumpectomy 2 weeks ago and am awaiting the octotype score. It is a tough decision. What does your MO recommend? How much does chemo lessen chance of recurrance? I think that will be a big decider if I end up in gray area. Also age at dx, other treatments? I assume i'll have rads and hormonal of some sort. Its a big stats game. Level of mental comfort you can live with also plays a big role in my opinion. -
Tasty thinking of you!
Dakota, good luck with your biopsies. Sorry you have to do this all over again.
Tina have fun with the school shopping and camping. Normal life, isn't it the best!
Juneau, I know the hair must be a shock for you but I think it looks great! I have always been a short hair person though... The melons look awesome!
Someone I don't know very well came to the house yesterday and I think she was trying to be nice but said that my hair looked like a pixie cut, very stylish. I wanted to punch her and chop off her thick long hair and then see how stylish she thinks it is.
Liefie, congrats on being cancer free. It is not at all surprising that you are emotional. You have been through a marathon and I am not surprised emotions of all kinds are coming to the surface. You did it babe!
Tpoly, I am so sorry you have to go through this at all but especially at such a young age. This shit isn't fair. We are here for you. I know it's easy to say no that mine is gone but the port is no big deal. It's your little friend and let's then give you the medicine that is going to kick your cancers ass.
Chitown welcome. Chemo or to no chemo is a giant decision. I had no choice but there are several people here that just went through what you are. It all comes down to your gut feeling and your tolerance of risk. If it were me I would probaly through everything I could at cancer to make sure I never had to do this again. Chemo sucked but it wasn't that bad. Not that it doesn't have it's risks of course. I hope you can find a decision soon and feel good with it. Welcome and sorry you are in this situation.
I am feeling a lot better today. The swelling seems to have gone down noticeably and the I can move my arm almost without pain now. I can see eyebrows and lashes just starting to grow back. I have my appointment with my MO tomorrow. I still fear that she is going to tell me I need more chemo and then will lose all this hair recovery that I have made. Going for a walk. It's hot but beautiful today. Love and hugs to all! -
chitown3: I get it and was there two weeks ago. Go back and read my process through and perhaps my experience might help you a little. I'm 44 years old my # was 22, with 0 nodes out of 5. Only one dr had the balls to say do it. Everyone else beat around the bush. But In the end I haven't come this far so at 55 some dr can tell me I have this in my liver too now.
JP your auto correct called Tazzy "Tasty"! LOL. I needed that!
Thanks on the thumbs up on the hair and melons. -
jpmom - I just cackled so loud sitting here reading your comment about wanting to punch that girl and chop off her long hair. I needed that. Good luck with the MO today.
juneau - I love the cut and the melons. I need to get me some more fills!!!
chitown - welcome and good luck making decisions. Fortunately for me - I'm being given no choices. At 37 with 6 positive nodes, they are throwing the whole big fat book at me. jpmom is right - listen to your gut.
tpolychron - sounds like you are on the right path and in control now. good for you! go kick some cancer a#@!
websister - Not sure when you leave, but wishing you a very enjoyable vacation
tazzy - not sure if you're on the table right now, but sending you healing thoughts.
I'm forgetting others, I'm sure. So hugs to all.
As for me - feeling pretty good after a nice xanax sleep. Resigned myself to whatever will be with my chemo start vs. my son's chicken pox vaccine. Like teeballmom said - this will all be a blip in their radar when all is said and done and I need to focus on me. For all you ladies that lost lymph nodes and are worried about lyphedema - I hear you, I'm right there with you. Back to work for 3 days now, sitting at my computer all day long and my left arm has been getting very achey... Just called the BS office and asked to be put in touch with PT so I can learn additional tools to combat this and prevent it from happening. If you google lymphedema, you'll find a ton of info. I kind of liked this site: breastcancerdiy.com. If you select lymphedema on the side, you'll get a page with some helpful info - as well as a link to buy an alert bracelet. We'll all know to tell folks not to stick needles or take blood pressure on our affected arm - but if we wind up unconcious, no one will know. Not to scare any of us - but it's an unfortunate reality. And on a bad day - that is what i get most pissed about in this whole BC thing. Really, g-d... at 37 this is what you want me to have to start dealing with? Anyhoo... Determined to have a positive attitude day and fight whatever gets thrown my way. Here's to kicking some BC butt today ladies. Have a good one!
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Omg that's hilarious. Damn autocorect. Actually if I can find it there was an absolutely hilarious email going around with some of those autocorect snafus. It had me crying with laughter. Usually it corrects me to say tizzy. That one always makes me giggle too.
Good luck TAZZY! -
Ramols: tell your BS you want a script for P/T, don't ask. She told me arm fatigue is a big deal. NOT to massage it to deeply or push to hard past being slightly stretched. Never sore. I have cording, you can actually see it run from my arm pit down around my upper arm and into my forearm now that she pointed it out. I just had to turn my arm outward (elbow toward floor). I don't have lymphodeama YET. She said of I push it past fatigue and dont "protect" this arm...then it's a future possibility. The longer you wait to start PT the tougher it gets to "repair" and I hear ya... At 44....like seriously! 😠 this is 💩!
JP...I've seen those emails too. So funny! Happy walking... I'm taking nap. Then I'll try to remember how to style short hair, and off to a spiritual meditation tonight at 7:00.
Hope no one else tells me I could just shave if or do a "Annie Lennox" hair cut instead... I'll freak on them! 😡 -
Just wanted to add my voice to the well wishes for Tazzy!
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thanks for the info juneaubugg - if i learned one thing in the past few days, it's to speak up loud and clear when I have a concern that some are brushing off!
cmartin and mccook - where you been? Hope you're doing ok out there!
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jpmomof3 - I smiled at the Tizzy for Tazzy - thought it was just my auto-correct doing that. Also have to correct Ramols all the time as it wants to make it Ramos.
Tazzy - continuing to think of you today, can't wait to hear from you from the other side of the surgery. Take care and heal well.
Juneaubug - looking good!
I have been back from the power port insertion for about two hours. The procedure wasn't too bad. I accepted the offer of Fentanyl and Midazolam, I figured it would help and I'm tired of being stoic. Was a little drowsy but relaxed during the procedure. The freezing was a little stingy, I have two incisions, one for pouch for port and one for jugular vein access. I could feel some pressure after the freezing but no pain. The tunneling felt a little weird, but not painful. It didn't take very long. They used ultrasound at the beginning to mark the vein and then did an x-ray at the start and before suturing up. I was sent to Day Surgery afterwards for two hours of bedrest and then allowed to go home. Now that the freezing has worn off the port incision is a little stingy and I am a little achy in the neck and arm. The doctor performing the procedure was a lady and she was very good to locate it so my bra strap and a seat belt will not be rubbing over it. Glad to be done, now I can concentrate on vacation, we will leave on Saturday. I
Welcome, chitown, you are right - there are some very smart and courageous ladies here. I agree that Juneaubug's posts as she went through the decision are good to review.
Take care, everyone -
Welcome chitown, prayers for Tazzy. And much love to everyone else.
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lostinmo I just saw my lumpectomy scar today. I was afraid to look at it but it looks just like the node scar so it wasn't bad. I understand the yuck effect of seeing yourself cut up. When you see it, you will probably be not as grossed out as you think you might be.
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internutz-it was gross when I first looked, but as it is healing it's getting easier to deal with. No desire to show to anyone though, oh wait I didn't show my boobs off either so no big deal.
Tazzy- thinking of you have a quick recovery!
websister-glad your port insertion went well. I don't remember anything about mine until I was being taken out in the wheelchair with DH at my side. I like it that way.
liefie-congrats on being cancer free!
chitown-welcome and good luck with your decision. I know it's a hard one.
ramols- thanks for the website with the LE info. I will have to check that out. I was told basics like you mentioned but still need to get the bracelet.
tina_jason- I've been making my DS make his own lunch and do laundry for over a year now. Told him it was so he would know how when he moved out. So glad I did this as he has been a big help to me. Happily his grades haven't changed, we homeschool so he doesn't get away with anything. But I do try to spend more time doing stuff with him one on one. Someday I will be able to defeat him in chess!
juneau-the hair looks great
I went to and met the woman who will be able to fit me with the prosthetic in a few weeks. She made me feel very comfortable and spent 30 min. with me showing the different ones. Even sent a little cotton one home with me for now so I don't have to stuff my bra. She also went over LE with me some. Then we were just talking and I found out she went to school with my DH. Talk about a small world.
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Tazzy-Thinking of you all day today and praying that all goes well and you are feeling good in no time!
liefie- had to laugh when you said you look like an ugly elf. My hair is about the same length and I have no idea what to do with it. I decided to try and spike it for church on Sunday and it didn't look too bad. I have cowlicks in weird spots and my birthmark just happens to be a bald spot on the left side of my head. I have spent my entire life making sure it was covered up but when you only have a 1/2 inch of hair there is no covering it. I am so sick of hats and scarves because I get so hot!!!! You're right, its better than bald but its got a long way to go before it looks like a "normal" hairdo!
websister- My port surgery was the easiest of all the procedures I've had since dx. I felt good following the surgery. I didn't get sick and was back to my old self in 2 days. My port was a godsend through chemo but i am ready to get rid of it. I've had it since January 6. I won't have it removed until after radiation. Sometimes it itches and sometimes it really sticks out but my surgeon put it low enough that you can't see it with normal clothing. I went to the beach in June and my swimsuit even covered it up. I hope you do well with yours.
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Ladies, I want to share with you the most inspriring post I have read on these boards in all my hours on here the last few weeks since my dx. Lindalou53 was answering a post about why someone should go ahead and have aux nodes removed if it fights the cancer vs fear of lymphedema. Her attitude and inspriation truly touched me. I PM'd her to ask if I could share this with my 2012 KCA sisters and she gladly approved. She just did her yearly update and is doing well and enjoying life! I hope this touches you too..~Aruba
LindaLou53 Joined: Jan 2006 Posts: 798 Post a reply Report this Post
Jul 30, 2012 10:08 AM, edited Jul 30, 2012 11:04 AM by LindaLou53
SccS, I am sorry that you and your wife are having to go through this difficult time. The central issue is that no one can give you any guarantees. Your wife's outcomes, whether she will ever develop lymphedema or whether her cancer is fully curable, is an unknown at this point. So yes, we try to play the odds by making the best decisions we can, based on current medical knowledge and often on our gut instincts. Unfortunately, in the area of lymphedema the statistics are widely variable and poorly understood. No one can tell you what will be your best choice, but we can all certainly understand the frustration, stress and anxiety these types of situations present.
I would like to offer you a few of my personal thoughts, hopefully to add another voice and perspective that might be helpful. I ask your forgiveness in advance for the wordiness of my reply. I have never been very good at being concise!
I have had 2 separate breast cancers. The first in 2000 on the right side, an invasive Ductal cancer treated by lumpectomy, SNB (micromets found in 2 of the 7 nodes removed), chemotherapy x 6 months and radiation x 7 weeks. Five years later in late 2005 I was found to have a new primary breast cancer, unrelated to the first. This time in the left breast, an invasive Lobular cancer and pre-surgical scans indicated the axillary nodes were most likely already involved.
At this point, given my prior history, I opted for bilateral mastectomy but discussed with my surgeon beforehand my desire to initially start with a SNB on the left, just in case the scans were wrong. She agreed to do this, but we both agreed that if there was obvious nodal involvement she would continue to remove nodes based on their visual presentation and her experience at detecting abnormalities. My goal was first to remove any sites of known cancer and second to minimize the collateral damage from the surgery.
As it turned out, the SNB nodes, the first level nodes, the second level nodes, and even the few 3rd level nodes my surgeon could safely remove were all positive. All 23 nodes positive and many with extracapsular extension (meaning the nodes had already burst into the surrounding tissue due to the cancer cell growth). When I was given this news post-operatively I was crushed, and later when all the final pathology reports confirmed the extensive local spread in the nodes, both I and my oncologist felt I was most likely already Stage IV. My oncologist did not give up on me, however, but rather threw the proverbial "kitchen sink" at me. I again went through a full 6 months of chemo, 6 weeks of 3-field radiation which blasted my chest wall, full axilla and supraclavicular region to hopefully kill any cancer in the local area. I had IV Zometa for 5 years and have been on Aromatase inhibitors now over 6 years.
Did I develop lymphedema? Yes, I did on the left side. In fact my lymphedema occurred 8 weeks after surgery and during my second round of chemo. I continued through my full rounds of chemo and my 6 weeks of intensive radiation with lymphedema already present and being dealt with. I continue to deal daily with lymphedema. I have endeavored to fully educate myself on the subject and also attempt to contribute back to my local community by helping to run a lymphedema support group. My lymphedema on the left is stage 2, which requires compression garments 24/7 and daily maintenance. I have just recently developed early stage lymphedema now on my right side after having to lift a heavy weight in an emergency situation.
All of this for me to make a few simple statements I hope you may find helpful.
- In spite of the advanced local spread of my disease, I am currently still NED (no evidence of disease) almost 7 years out from my diagnosis in November 2005
- I have learned to live with lymphedema. Is my life miserable because of this condition? Absolutely not. My life is full, active and not revolving only around cancer or lymphedema
- Is my cancer cured? That still is and always will be an unknown until it's not. In fact I get blood drawn today to repeat a tumor marker test that was ever so slightly elevated a month ago.
- Would I do things differently if given the chance? No I would not. I am at peace with my decisions, knowing I did the best I could with the information and understanding I was given at the time.
As with all life, once we make a decision and head down a particular path, we can never know how things might have been had our choice been different. We really can never know for sure that our actual outcome was a direct result of the choices we made either. There is no question that some patients are over-treated and suffer adverse side-effects unnecessarily. Given that we must live with whatever decisions we make when surrounded by all this uncertainty, it is my opinion that there are 3 basic elements that must be present.
- Surround yourself with the best medical professionals possible, given your insurance, financial and regional constraints.
- Inform yourself and become an active participant in your treatment decisions, knowing it is your right to have your voice heard and your opinion respected.
- Give yourself the grace and peace of mind, of knowing that you made your decisions to the best of your ability.
Please understand that your wife's own cancer presentation is unique and cannot be compared with others, even though we do often gain insight and information when reading personal experiences here on these forums. I only hoped to offer the concept that whatever the outcome of our treatments, Life can still be productive, rewarding and precious to us.
SccS, I wish you and your wife the very best during this most difficult time. I believe you have already accomplished steps 1 and 2. Take one day at a time...prepare to the best of your ability for the future...and cherish each moment you are given.
Life is not measured by how many breaths we take...but by the moments that take our breath away! 2000 Right Stage IIa IDC, AC/Taxol Rads, 2005 Left Stage IIIc ILC, Bilat Masts,Taxotere/Xeloda, 3 Field Rads, Zometa, Aromasin, 12/6 yr survivor!
Dx 7/14/2000, IDC, 1cm, Stage IIa, Grade 1, 2/7 nodes, ER+/PR+, HER2-Dx 11/21/2005, ILC, 5cm, Stage IIIc, Grade 1, 23/23 nodes, ER+/PR-, HER2-ost -
Aruba, thank you for posting that wonderful piece by lindalou53. Amazingly fitting and true.
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aruba - thanks for sharing that very inspirational post. Our surgery decisions are all very personal, and only we can make them for ourselves. When I was first diagnosed and it sounded like lumpectomy wasn't such a good idea based on the placement of my tumor - I immediately decided to just go for a bilateral mastectomy - even though my right side was not yet cancerous. I decided to just get it all out to prevent any possible future cancers there. And when my surgeon said she recommended removing all lymph nodes on the left side - I decided to follow her advice. I didn't look back. I will admit that as I've watched many of your lumpectomy stories move forward I have sometimes wondered if I opted for an overly aggressive treatment for myself - but those moments are fleeting. I feel certain I made the right choice for me. I think your friend lindalou is very wise and was able to put into words some of the things I felt when I went through this decision making process. And her comments about lymphedema are very inspiring and remove some of the fear I feel about my left arm. Thank you for sharing.
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Thank you everyone for the support. The egg retrieval went well, just feels like I have really bad cramps but doing well. Also, thanks everyone for sharing your port stories. Sounds like Monday will be easy for me. You girls are great for talking me off the ledge!
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Aruba, thank you for sharing LindaLou's post.
Tazzy, thinking of you.
Hugs to all!
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2friedeggs-
Yesterday went well they were able to get the sample they were not very optimistic in the beginning. I did feel like a contortionist at one point. My little guy is 8.... He is so cute. And happy to see me in my scrubs today. Have a great day everyone. -
Dakota that's great they got the samples , that it went smoothly and that your little guy was happy to see you ready for work today. I remember my son at that age; he took in alot that we didn't realize he was absorbing. LOL- I didn't want to say anything until yours was done , but when I had mine there was one point that the radiologist was really struggling to get the sample as mine was on the deep inside near the cleavage area. Anyway she was on the last sample and here she nicked a vein- they said its like a 2% chance or something of that happening. Even though they had numbed me I sure felt that! I ended up with a huge old hematoma and bruise. It was crazy.
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Achy, stiff and sore today; not the best night post port insertion but knew I would feel like this from other's sharing. Know that tomorrow and each day after will be better.
Tpolychron - glad the egg retrieval was successful
Dakota2012 - glad they got the sample, hope you get good results
Aruba - adding my thanks for sharing the post
Know I've missed responding to tons, take care all -
Websister. Hope you heal and enjoy your vacation!!
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Web sister: enjoy vacation. Hope you can TRY to not think too much about this stuff!
Dakota: praying for good results for you. -
Hello all. Waiting for chemo treatment #5 and just remembered I forgot to put the lidocaine cream on my port... argh... It is going to hurt! This day is going downhill fast. Woke up after an awful night with little sleep and feeling sad and angry today. I don't want to do this today! Can I get a do-over? Sorry just needed to vent... Anticipating the SEs and that I probably won't make my niece's engagement party this weekend. Just one more fabulous BC day. !
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Hey chrissera, sorry you are down today. My moods have been up and down a lot lately too, especially since my surgery. I am not sleeping well either. Hot flashes and discomfort and not being able to sleep in my normal position are making it hard to get enough sleep. This morningI found myself angry at my body for failing me, angry that I can't run or do things like I used to, angry at the young healthy women on the greenway path that blow by me with their long hair and nice eyebrows and perky cancer free boobs.
I am getting over it though. The walk helped. My kids energy helps. It's normal to have these swings. I wish I could work the anger out though. It's taking a long time. I think I am getting better and then it swings in again when I get news I don't like. Every time I found out more news about my pathology report I got more angry.
I am sitting in my MOs exam room right now waiting. The nurse made me cry by commenting that I looked a little down. I hate it when people do that to me. I am nervous about this appointment for some reason. I am nervous that she is going to say I need more chemo. I am nervous that she is going to say I don't need more chemo. I am confused and scared about all this.
On a good note after this I am going to a really good Thai Vietnamese restaurant with my mom and going to eat Pho, vietnamese soup, and then I am going to go test drive some fast cars, really fast. And I am going to leave all this shit behind me for a while. -
Hugs yor way for good news and a great afternoon!
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jpmom- hope you get good news!
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I am still here. She was encouraging. She thought there was a decent (though of course not complete) response to the chemo. No one at tumor board recommended more chemo. So I get to keep my pixie hair. They are going to have to be agressive about the radiation, but I knew that. I am feeling somewhat relieved. I didn't realize how stressed out I was about this appointment.
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Thanks jpmom . My chemo nurse made me.feel a little better.. good luck with the MO. Keeping positive thoughts for you!
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