October 2014 Surgery Sisters
Comments
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Sandra, regarding the article about repeat surgery - I felt the headline was rather misleading. At first read, it sounds as though a substantial number of lumpectomy patients end up needing more (more drastic) surgery down the road, such as a mastectomy due to recurrence. Instead, it's mostly a matter of getting clean margins, although some women end up needing mastectomy due to finding of more widespread cancer in the tissue than expected.
I think the headline could be re-written, frankly.
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I want to wish all the October Surgery Sisters a wonderful Thanksgiving. I have many things to be grateful for and I hope you are all able to find things, too.
One of my favorite tricks when sleep is elusive is to go through the alphabet, listing things I am grateful for from A to Z.
My stitches were removed yesterday from my nipplectomy. Sharpei is a bit red and struggling but she looks a whole lot better than when she was cobalt blue and very wrinkled! I am grateful for my sweet little blushing Barbie boob.
My first fill is scheduled for next Monday. We have worked out a schedule which hopefully allows us to get to Florida, into the light and the warmth. I hope to go down between fills to get my contractor moving along so we have a place to go to. Then I will have one extra fill midweek and a double fill right before we leave. I hope I can tolerate it all. I have been told to take ibuprofen before I come to the office, and maybe in the evening.
Our holiday dinner is coming precooked, pre prepared from a local market. More time for gratitude, serenity and joy.
Happy Thanksgiving all!
Sharpei
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Good to hear from you, Sharpei. I hope your Thanksgiving will indeed be very serene and happy, and that all goes well for you next week.
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Had my last fill today - made it 580cc each. He tried to put more...really tried..ouch. Squishes scheduled for Feb 4th.
PS talking about anatomical 700ish size.
Final path report showed extensive LCIS, minor DCIS, proliferative fibrosistic changes, lots of different atypically, and fibrosystic changes with stromal fibrosis.
Filling out the genetic testing paperwork I realized I am now the oldest woman alive in my family bloodline that hasn't died from BC. Glad this sh-- is out. And glad it was done early.
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"Filling out the genetic testing paperwork I realized I am now the oldest woman alive in my family bloodline that hasn't died from BC. Glad this sh-- is out. And glad it was done early"
That must have been pretty sobering. That certainly puts the whole process in perspective, doesn't it? Here's to many, many more healthy years.
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awe hopeful,,, that was sobering, but felt so very very good. I have been questioned by so many as to why not just watch and wait. You made me feel validated. Thank you.
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Fourminor we are in the same boat. I am going to research, hear what they say and make a decision on what makes sense for me. You really don't know how your body will react to treatment because we all are different. I am not happy about patology report, it has conflict in it, here it is
HER2 -, ER/PR positive high for both, K67-70%, John Hopkins Stage 2, grade 2. Having BM mid Dec. Breast MRI, Bone scan, chemo and all the rest ,time to buckle up it maybe a bumpy ride!
Patology said it was slow growing, the final patology report k67 was high that means its fast growing, so researched k67 info, some docs won't even pay attention to it because it can be different from one lab to another so I am waiting for my Oncotype to be done before I freak out. Oncotype gives you the personality of the cancer over all so I don't think splitting it into two would change it. This is just my thoughts. They are being very aggressive with my tests and I have read that whether it is a reoccurrence or secondary primary (that how they refer to it when it comes back in the same breast) chemo is the standard treatment. Having said all this who knows, on reports says one thing another says something else. My surgery is coming up soon, I have decided to see MO before to get more info and have my primary Doctor order Onocotype test so that can be looked at before surgery. Could this get anymore difficult!!!!!!
Hopeful8201… I lived in Lincoln City on the ocean. No sun. As you can see my K67 is high also, I believe there maybe a connection. Were you HER2 - and ER/PR positive, mine was 95, 98 percent.
This is a website you can use to get your stage, grade and what the treatment options are, It was the best one I found,
http://www.lifemath.net/cancer/breast/cancer/therapy/
I would be going nuts if I didn't you guys to talk to. Those tests have me worried, the what ifs are flying around my head like killer bees.
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Horsemom,
I don't blame you for not doing a wait and see considering your family history.
Had my weekly BS appointment. The sonagram showed not enough fluid to bother aspirating. He doesn't need to see me for two months!!!
I see my PS next Tuesday to see about scheduling a DIEP next year.
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Yesterday was my one month anniversary as my plastic surgeon put it. One month from having a bilateral mastectomy but it was also two months of finding out I had BC. Not a good day anyway you put it.
I saw the plastic surgeon today. He said everything looked great. He pumped a 100 cc into the Tissue Expanders (TE's) this go around. If he does another 100cc into each one at the next visit with him on December 16th, I'll be fully expanded. He finally let me get out of "the iron bra" aka the ace bandage that had to be tightly wrapped over the top of my undershirt. What a relief! He suggested a soft bra to wear for now such as the Genie bra. One of his nurses was so sweet and give me some coupons for the bra because she found them in the newspaper and cut them out to give to someone. Walmart among a few other places carries them so I popped into Walmart quickly and got a 2 pack. The bra is quite comfortable actually.
Also saw the Physical Therapy Research Coordinator and I'll be taking physical therapy in the plastic surgeon's office for my right arm and it will be for about 4 weeks. I can move my left arm as normal but the right one needs some help as it is the one they removed lymph nodes from under. It is stil a little stiff and I can't reach up to get something without twinges in it.
I have a doctor appointment tomorrow to recheck/refill bp meds, etc. Then nothing until Monday when I start chemo. I'm looking forward to Thanksgiving as well as Friday, Saturday, and Sunday without any doctor appointments.
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Happy Thanksgiving! Hope everyone avoids overdoing and makes some time to pamper and recharge themselves. I am so thankful for all of your contributions to the site. Many nights I am just too tired to respond, but do enjoy reading everyone's posts.
Sandra-An amazing woman-juggling your home life, taking care of yourself, and being so supportive to each of us. I can so relate to your "no husband ever" quote. Loved It!
To everyone with young children-how difficult it must be. I have a daughter home from college, I am back to work all day, and she seems dissapointed I don't have the energy to run around with her at night. My day begins at 5am and by evening, I'm spent.
Horsemom-I also had my last fill today. Haha-at 420cc I feel huge! My gummy will probably be 350cc. : )
Laura- Are they using a port for chemo? If not, be sure they don't use the arm (right?) that had the nodes removed. No blood draws, blood pressure cuffs, and especially chemo infusions because it will increase your risk of lymphodema. The first chemo hits you a few days in. The day after you can get a lot done because you feel good and have an adrenalin rush. Day 3 and 4 you feel a little "off" but the anti nausea meds will get you through. I was required to take meds for 4 days. The first time I continued those for a few more days, but after you know what to expect, you can judge better, or may not need the meds. I became addicted to Yorks peppermint patties to keep me settled. You need to eliminate spicy foods and will lose your ability to taste foods. You will need to nap and rest! Good luck-relax and enjoy the time at chemo-they usually have hot tea or snacks available. Also drink tons of water to flush the toxins out as fast as possible.!
Yayy! I have "graduated" and will move on to the next phase Dec. 8th with my catscan and radiation setup. Then radiation for 6 weeks. 3-6 mos and then exchange. I will be completing these treatments approximately a year from my diagnosis.
Congratulations to everyone with good news this week! More to be thankful for!
So a week of Tamaxofen and no hot flashes or other noticed side effects. I thought I'd be less emotional, but seem to be edgy, easily annoyed, less tolerant, and maybe a bit more sensitive. When I asked who wanted to drive with me to dr. today at dinner last night, no-one seemed too interested-so went on my own today(nothing new-my daughter would have gone if I called her from work today to be ready). Then driving myself 30 miles home get a call from DH (who has been home all day while I worked) freaking out about shopping for Thanksgiving food due to incoming snow storm tomorrow-I reply I'm already at the store.
It seemed I was feeling sorry for myself today-don't know why; I've been on my own, strong, and managing well most of my life. At the hospital today, I saw an 80+ year old woman in a wheelchair having the hospital volunteer call and see why her pre-arranged ride had not arrived yet. Strong and independent despite her age and physical condition. I saw myself in her. I thought "why would I even expect family to step up and volunteer to ride/drive with me-it only sets me up for dissapointment. I am strong and can handle this myself and if anyone does anything-it is then a pleasant surprise and bonus." All in all, I have a very good life and lots of supports to be thankful for!
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Revup - Oh yes, Lincoln City. I think they average about 60 minutes of sunshine per year
We head to that area, specifically Neskowin, whenever we get an opportunity for a beach weekend. And despite the lack of sun, the gardens are always about 2 months ahead of mine, which makes me quite jealous! Yes, I'm ER/PR+ (100% & 88%) with high Ki-67, HER2 - high Mib rate, one known node. I don't have yesterday's pathology yet, but the tumor seems to be responding well to Femara alone - but I won't take that as a given until I get the numbers.
I did take a look at that website - it's pretty interesting except when it's your own number's you're looking at. According to it, I had a 35.8% chance of having nodal involvement. Well, I guess I grabbed the brass ring on that one. I didn't see TC listed as one of the chemo options so I'm just going to let that sleeping dog lie for a while longer. Thank you for providing the link - it really is interesting and kind of eye-opening.
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Hopeful8201… It is just a tool not the bottom line, we are the bottom line. We all share a part of each others experience so I support you, I know how hard it is with all of this. You know I think it was easier with reading about this in books, than all of this info. I was so afraid the first time and it is no different now. Every test makes my knees weak and I have been a manager all my life in my jobs. I ask myself how can I be this weak, but I am. Every pain I get shakey and think the worst. There is one thing I know I will fight this to the bitter end and if this helps I felt the same last time and I made it 20 yrs and you can too and more. They didn't have all these test back then so who knows I may have been in deep trouble per the numbers but here I am. I went through the last go around alone. Had someone from the cancer group drive me to the hospital for surgery both times and the soon to be ex-husband of 18 yrs came and picked me up. I went to all my appointments, chemo treatments on my own. I know how it feels to be out there afraid but I will tell you that the sun comes up everyday or clouds but the days come and go. You get better, you get stronger and you figure it out. All this doesn't change the fear I feel now, but we can only go forward , and help each other over the speed bumps. No one knows what the future holds and that includes Doctors. Remember stats are just that, numbers to look at so I am sorry I shared that website, I didn't fare any better. Just know that you are unique and no number defines you. Never back down from the war wither it be trying to keep your family together and yourself or the treatment. Just wanted to say there is more to this than just \treatments, I gather strength here every day from being here and it feels good to give strength to all of the sisters here when I can.
Revelle
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Thanks Slavrich for the tips! I do have a port in now. It was placed this past Friday. So praying all goes well with that.
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Laura, I'm so glad you got a port! Have them perscribe a numbing cream for you. Put it on before you leave the house. You won't even feel them access it to start your infusion. You won't even feel the medicine going in.
The first treatment is the easiest. My husband and I were high fiving, we got this, this is nothing. As side effects come up, tell people here what they are and we can share with you what worked for us. Good luck!
I don't see how you gals are handling such large fills. The biggest one I got was 80cc. WHEW. I am very small and lean though and that may have been against me. I had my last fill yesterday. Something popped, my PS said that is normal sometimes and it's like when your tennis shoe skids. Didn't sleep great last night from the discomfort and am hurting today. It's like the TE skid on my rib.
Slavich, so glad you are on to the next phase. Great thing that the hot flashes are out of the picture, they just make things miserable. I drive myself to everything unless there is an important meeting with a dr. and then my husband comes with me. It is just not worth the aggravation of "interrupting" his work or listening to him traffic cop all other drivers, or listening to him complain about drs. being behind and overbooking. These drs. run behind because of emergencies, conference calls with other drs. to help treat someone the best way, or maybe they are helping a family getting bad news and answering extra questions. I want them there for us when we are in scarry moments and we may be causing someone elses appt. to run late. Family members sometimes are just plain disappointing. BUT, then they do something that is just amazing and supportive, so we have to hang onto those moments. My husband gets upset with me if I start falling asleep at 8:00. He just doesn't realize that some nights I only get 2-3 hours sleep.
Yesterday I had my new man hair colored to get the gray back out of it. At least it is my hair, but I hate the man cut, I am not crazy about the color, and my nails are breaking again from the last treatment. I can't pick things up very well when this happens. I'm frustrated and that makes me want to cry and that makes me mad.
I think we all are just feeling a bit more pressure because it is Thanksgiving week and we're not all up to par. So CHEERS to all of us and to a better day today.
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Dear Revelle - Please, don't beat yourself up for posting that site. It's tough seeing the stats in black and white but it's just stats, as you pointed out so eloquently. And frankly, some times it's ok, maybe even good, to be reminded of what a tough sucker we're all fighting, just to help stiffen the resolve. I appreciated the info and I deeply appreciate YOU.
I really wish I could be at hand to help you as you trudge back into the fight that none of us picked.
And yes, I derive a lot of strength and comfort from each of you and from supporting my cyber-sisters. I will be thinking of each of you tomorrow with thanks, affection and hope for your healing and well-being.
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Revup--It depends if the tumor is the same as it was before. Granted, pathology has changed a lot in 18 years. I had DCIS now ILC, totally different cancers, so its second primary.
Sharpei, Glad to hear you are able to get to the warmth!
Happy Thanksgiving everyone!
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REALLY GOOD NEWS!!
I've only spoken briefly with my BS's office but got the word that my repeat biopsies showed that the proliferation rate has fallen to 4% (from 43%) after 5.5 weeks on Femara. This also brings the Nottingham score down 1 point.
This is terrific news - we were hoping to get it below 10%. Chances that I'll be facing chemo are slim to none. This improves my long term prognosis as well and demonstrates that there is definitely a response to Femara, so I'll be taking it knowing that it works for me, rather than just hoping so.
Getting the news before the holiday is the icing on the cake.
Thank you for letting me share my relief and delight. Have a very good Thanksgiving, each of you, despite set backs, crushing news and recent surgery and its attendant challenges.
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How long does the numbing cream last? I live an hour from the treatment center.
I'm not sure I'll see the doctor first but it looks like I'll have my labs first, I was told that they would numb it there. Just curious if I should get them to give me a prescription to make it easier on myself. It looks like they may be giving me 15 minutes for numbing cream to work from what I have on the appt.
- 10:00AM : Arrival Time
- 10:15AM : Lab
- 10:30AM : Return
- 10:45AM : Chemotherapy
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Laura It lasts at least an hour. I rub it in and then leave a glob....I want to make sure I am numb! Then put a piece of seran wrap on it to keep if off my clothes. I use it on my arm too for when they take blood. If they have cream there to give you then go with that.
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Hopeful, CONGRATS! THAT IS SUPER NEWS!
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TJG2 - isn't it?? I am so relieved and happy. My husband and father both cried when I told them. It feels so good to be able to give them some good news for a change.
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Hopeful8201… thank you for being so thoughtful it is much appreciated, Great news for you enjoy Thanksgiving!
Fourminor you are very correct in what you say, it is different than the first cancer
I was told today that I would have to wait until Monday for surgery date, I am really depressed about that. The surgeon seemed on top of her game so I feel good about her. She didn't want to take the right breast because it was unessesary surgery but would do what I decieded. I haven't changed my mind on that one. I know you all are beyond this stage but you have helped me so much to get ready for what's coming and following you gives me some peace. Happy Thanksgiving to all.
Revelle
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That is great news Hopeful!
TJG2, thank you!
Revup-65, I agree about this group helping us let us know what's coming up and how to prepare. This is a great group!
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HAPPY THANKSGIVING!!!!
Hopeful: Fantastic News!!!! What a great holiday gift!
TJG2: I have similar with the nails-but they grew fast during chemo for some reason. There are some that are unattached about 1/3 down from the tip, but they are strong and I have to clip all my nails almost weekly. Thought for sure a couple of the toenails were not going to make it. The dr. said it could take up to 18 mos. to get feeling back from neuropathy, but my left hand fingertips are already coming around.
So...the hair!!! Congratulations!!! Who knew how satisfied in life I'd be over newly grown eyebrows and eyelashes! Ohhh so much to be thankful for today.
How long is it? I have wanted to color mine and then I would quit wearing the wig, but I think it needs to grow out a bit more-and it's black and white- My hair was reddish brown. My father's hair was this color. Everyone loved my wig color and style-don't think I'll ever have hair look that good. The wig is not as secure with the hair, and I'm quite comfortable without it.
Did you just add color?- I've read some people don't recommend any permanent products, but I need to change color and cover gray.
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Hopeful - I am SOOOO HAPPY for you!!! What a wonderful gift!
Have a wonderful Thanksgiving and I am giving Him thanks for the news you shared! :-)))
Love ya!
Akitagirl
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Happy Thanksgiving, everyone! Typically, besides Easter, this is my most favorite holiday of the year - even more than Christmas.
However, to be honest, I am up in my room, hiding from the activity downstairs. I spent all day yesterday baking, preparing side dishes, making up the table, etc etc. However, this morning, I am feeling blue for some reason and just need some time alone. I can hear my two daughters arguing about who is wearing what, yet in the background is some of my favorite praise and worship music playing downstairs... Weird.
I guess part of it is because my dad, aunt (his sister) and uncle are coming - and they are all still feuding about dad not showing up at all during my surgery time/recovery. To make matters worse, for some reason my aunt thinks that I am blaming her for my dad not showing up and has put me in the middle of it. We also invited a friend from church who is a single mom with two teenage twins - one of which (daughter) has been giving her such a hard time that the mom actually completed foster care paperwork to possibly send her away!!! Arggghhh!!!!! I am not in her shoes, I refuse to judge her, but these are her biological children, she is a woman of faith...and I just don't understand why everything has to be in such an upheaval - not to even mention my BC.
Sigh... my daily devotional has been talking about giving thanks regardless of feelings, regardless of circumstance, regardless of trials and tribulations. I have chosen to do this each day, but the joy that is promised me, seems to be hiding. Where are you, Joy and Peace???
Sorry - I can't believe I am venting on this day to you all. However, I have nobody else to honestly just state the truth. Thank you for "reading/listening".
Finally: I am thankful to be alive, I am thankful for my salvation, for my physically, mentally and spiritually healthy core family, for how blessed we are in the 'material things' of this world, for my wonderful profession and job that is waiting for me to return, for my healing, for the words that come and the beautiful music my fingers can make one the piano - even when I cannot verbalize anything. I am thankful for friends and the family that I was given to grow up in - I pray that they walk through my doors today and that all bitterness, anger, resentment, hate or any other negative feeling leaves them the minute they step through the threshold. May we bring them a time of joy and peace, of laughter and delight.
Thank You. Thank you. I am Thankful.
R.
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Akita, glad you are having some alone time. You are just going to have to try to stay out of the upset today and hope that your good example rubs off on the others. Your relatives need to get over it and stop being childish. Everyone does the best they can. Very few of us go out of our way to upset others. I don't understand why people feel entitled to judge others but get so angry when they are being judged themselves. Can you declare a moratorium on all that today?
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Akita: Sorry for your day yesterday. I think our experience does give us a different view that others cannot see or understand.
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Hi everyone,
Thank you for your kind words and encouragement. I do apologize for vomiting my issues yesterday.... I must say, that my prayers at the end of that message I sent yesterday were answered!
My hubby really stepped up and the turkey was delicious and he also made his homemade 'green bean casserole' without the typical mushroom soup...I still don't like the taste of mushrooms and green beans together, but no biggie.
My family came through the door and actually behaved and had great conversations! Brian took everyone out for a fast spin in the new Maserati - I think that was probably the highlight of the day. :-)
At any rate, after all was said and done, and I washed a thousand dishes - it was a great day and I am very thankful that the Joy I have been seeking showed it's rays though my clouds.
Thank you everyone for letting me vent and I really hope everyone had a wonderful Thanksgiving and hope nobody is crazy enough to go shopping today...if so, please be careful. Those folks looking for the best deal can be dangerous to your health. ;-)
All my best,
Akitagirl
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You (and everyone else) are always encouraged to vent here, Robyn. It's healthy to do so! That being said, I am so glad to know that everyone stepped up and behaved like loving, adult family members and made it such a nice day for everyone involved. I hope you can stay out of the kitchen today and put your feet up for a while.
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