TRIPLE POSITIVE GROUP
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Thank you deni1661
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Meowmy, I have numbness and sometimes even feel sore under my arm where my nodes were removed. Not below the armpit but in the arm itself where biceps was supposed or used to be before so to speak. My oncologist says it is because of surgery and it will ho away. As ss my physical condition is concerned I have to admit I lost my muscle tightness very quickly now when I am not running or exercising the way I used too. Cherry
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LTWJ, I don't know your insurance but many BC patients are assigned a "case manager" to navigate the insurance system and their health care. Ask for one and see if they can help you. Ask the PS you want if he/she will accept whatever your insurance pays. I was allowed to go out of my insurance's network for my PS. My case manager made that happen.
As Deni1661 wrote, going ahead can you "peace of mind" since your margins were not clear. You know you are doing all you can to eliminate the cancer. It is still crappy.
Emily, my Surgeon offered to take as much as he could and "save" my breast. He also told me he could never look me in the eye and say he got all the cancer. When cancer was found in the other breast, the decision for the mastecomies became easier (not easy but easier). This is a tough decision. I will keep you in my prayers for peace with your decision. For me, I eventually got to the peace point. I have never looked back and question this decision. Today, I love my new breasts. They are so much pretty than the original ones!
Everyone, DH and I had a wonderful mini vacation. I will post a picture later!
Vicky
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I think I am caught up on all the 3+ posts.
I found this quote on another site:
"They broke the wrong parts of me... They broke my wings, and forgot I had claws..."
This sums up the strength of a Triple Positive Woman.
Vicky
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Vicky, so glad you had an awesome mini vacay. I absolutely love the quote you found as well. You gotta have claws for sure.
Your love of your new boobs keep me focused. I hope to echo your feelings a year from now. xo
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thank you for your posts Kim, Vicky and Demi and for your prayers. Vicky I love your quote
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For those of you considering mastectomy ...
I posted about this a long time ago and I realize we have new members that might have missed that previous post.
Early on I talked with another survivor. She said I could ask her anything. I asked if there was anything she regretted. She said she wished she had made pretty pictures of her breasts. She said she had medical pictures but nothing pretty.
I called the photographer that does head shots for our business. She agreed to make the pictures. Just so you know, I had never done anything like this and I thought it would be awkward. It wasn't. My DH picked the pictures and put them away. I have looked twice.
The first time my Plastic Surgeon examined me, I stated that I wanted to be at least a D cup when this was over. He said (and I quote), "Aesthetially, I find your breast too large for your physique."
Well, the first time I looked at those pictures ... he was right. They were not that attractive. They were mine, however.
I would encourage anyone considering a mastectomy to make pretty pictures. You never have to look at them but if you want to, you can.
I believe having the pictures helped me realize that what I had wasn't that great (and of course they were cancerous). It helped put into perspective my reconstruction.
Vicky
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coachvicky, always love your posts, whatever you post, just love it, you always make me smile. Love the quote. Sounds like Game of Thrones. Glad to hear your vacation was great.
I can understand you about the breasts, I actually have the pictures, back in 2004 in our thirties my husband and I did some pictures, I looked at them yesterday when I could not sleep after the infusion, keep them in my drawer in the bedroom, in fear if some of kids may find them. I wanted to see whether they were perkier or any different. I was slimmer then and they did looked better compared to how they do now. Now they are large boobs, too large for my frame, quite saggy, I have to lose weight and this thought of not knowing what is going on there is overwhelming but I also hear what ElaineTherese said, once they gone they are gone and my scar is not even in the breast so I am keeping those unless the genetic testing comes positive.
I have decided to go on with three infusions EC, had another chat with this famous professor today and told him that I will try to go through all three because he said that I will not benefit from only one, three is the minimum but even two is better than one. He is the most prominent in his field, his opinion was important to me. I understand it is not on the same scale as you have in US, Sweden being small but still has the same level of standard care, he is the best we got and if he would have told me: trust me you do not have to worry, paklitaxel is more than enough for you, I would have not agreed to do it. But he did not, he said that no one can give any guarantees, and even though he thinks I may not need anything else, he still can see how adding an anthracycline can give us both some peace of mind. Something like that, I am doing it, two more months of chemo, I must be crazy. The peach fuzz on my head will be gone again, and I will lose my eyebrows and eyelashes, they remained intact until now, but I am doing it. That and the bone scan, please keep me in your thoughts, I am very very scared.
On the bright side, I cooked my first New Orleans gumbo today, it turned out very well, we all liked it, I will be cooking it again soon. I started to cook American cuisine, this is also a silver lining to me.
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Jagger - I feel exactly the same way. I had my last Herceptin infusion on Friday. The joint pain started about 3 months ago. My joints in the fingers ache only when I first get up in the morning. My wrist and thumb joints ache throughout the day. My legs are very weak when I first roll out of bed. I feel like I have arthritis and I'm only 51 years old. I started taking Tamoxifen in February. I suppose it could be a combination of the Herceptin & Tamoxifen.
SpecialK mentioned a while ago that slowing the Herceptin infusion down to 90 minutes can help with the side effects. I kind of wish I had followed that advise 3 months ago, but I just wanted to get the infusions over with. I asked my nurse if Herceptin was the culprit. She said that a lot of patients complain about the joint pain towards they end of this treatment. She felt it was the Herceptin. I don't know anymore. All I know is that I have no more infusions. Just another 4+ years of Tamoxifen. Yay!
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I don't post here often but coach I love you what said about the picture thing. I actually did that and my story is opposite. My surgeon told me with my size and frame he'd go bigger. Yay me. So i was a saggy A-b cup before , but after nursing 2 kids. Before kids I was a C. So my finished size will be a very full C. He told me I deserve what I want after this.
So like you i took my pictures out and looked at them, then I have a friend who works on computers and does designs, she scanned my picture in and did some fun scale thing. I loved it.
I am currently done with everything except herceptin so my waiting game is here for exchange and reconstruction. My PS won't do anything for 9 months after rads.
Hope all you ladies are having a beautiful day
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How cool is that Shelabela! Yes, you do deserve what YOU want!
Vicky
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Cherry ... Great news on the gumbo!
I am happy you decide to move forward with the 3 additional infusions.
Keep looking for the bright things!
Vicky
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Shelabela, I hope they turn out just they way you want them too.
For those of you who did AC is it hard on the nails? Do I need to ice my feet and hands?
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Cherry, I never iced my feet or hands during AC or Taxol. Never had an issue with my nails.
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Oh HapB.
I'm sorry that you've been having such problems. What did your doctors say? My oncologist always says that you only have one heart. Treatment isn't worth it if your heart is having problems. ((Hugs))
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HapB, so sorry to hear that, my oncologist says that se of Herceptin are almost always reversible Cherry
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I had a follow up appt with NP yesterday and when I mentioned the bone pain with the Herceptin, she acted surprised as she had never heard of bone pain with Herceptin (HapB, it made me think of you).
I have an appointment for genetic testing in December and hopefully I haven't passed the nasty BC genetic trait to my daughters. Hopefully this testing will also show if I am a carrier of the colon cancer gene as well, we have had multiple colon cancer deaths and dx's in our family...I pray that I haven't.
I will meet with a nutritionalist who will hopefully help me wade through all of the conflicting info on what we should or should not be consuming as HER2 patients, I feel that it may be pretty much of what I already know but, I may also learn something new. I will pass the info to you all of what I learn. One thing for sure....everything changes from week to week and year to year so what they say is good now, may be a no, no later.
Herceptin#2: I took the advice of several of you and asked my nurse to infuse the Herceptin at 1 hour instead of 30 minutes she did last time, we will see if it makes a difference! I'll start my AI's when they get my FISH (estrogen levels) back and I am a bit nervous about the SE's.
SX scheduled for 11/28 for tissue expander removal and implant, I can't wait to have my breast finished! Although I have a lifetime of monitoring ahead, I am celebrating the very large milestones I'm hitting now.
Sarcastic laugh for today OR
OR just shaking my head? Young receptionist at oncologists office said to me that she understands how I feel about maybe having a prophylactic MX on right breast in the future as she had both her breasts removed too. I asked if she had BC or if she had the genetic trait passed to her, she said no. (silence) ??? Well why did you have both breasts removed then? Oh did I say removed? I meant reduced. I had a reduction on both breasts. Yeah, she knows how I feel.....she totally does. She should know better than to compare the loss of breasts due to BC with her voluntary bilateral breast reduction. Just sayin'Melanie
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MoodyBlues,
There is a forum on BCO called "stupid comments." You have got to put that receptionist's comments up there! Did you set her straight?
Vicky
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About that mini vacation ...
We went to the Louisville, KY area for a "romp" at Churchill Downs with Kentucky Colonels from around the world. Here is a link to the Kentucky Colonels' website: https://www.kycolonels.org/. My husband is a Kentucky Colonel. We won $5.80 on a $6.00 bet.
We have gone for many years. We missed last year because on my chemo treatments. I look back on 2016 and realized how much of our lives were "put on hold" to deal with surgeries, recovery, and treatments. To all of going through this now, I promise life will get better and you will control your lives again.
We had a great time visiting the area. We had both been stationed at Ft Knox, KY (DH while in the Army and me as an Army Civilian). We visited with friends from the past.
Here is a picture.
Vicky
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Hi Everyone - Question please - Has anyone waited to start Anti-Estrogen Pills until after Herceptin was finished to see if SE's were specific to which drug?
I called my MO's office today to check the status of 'pre-meds' and was told my MO was too busy (unfortunately) and wouldn't call my insurance until 7 days prior. Is this normal? (First Chemo starts Nov 28)
FYI - My friend started taking Femara a few months ago (no Herceptin/ No chemo/ No radiation - bmx only) and had to stop, the pain in her fingers/joints/legs were so bad she couldn't walk/drive.
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Vicky, Whistling. Can you hear me? You look absolutely beautiful! What a nice picture of you two.
To answer your question, I was so stunned with her comment that I just stared at her (thus the silence) and then said "You know it's NOT the same thing right?" For goodness sake Vicky, she works at the oncologists office!!!
Melanie
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HapB. I think it comes down to quality of life as you make your decisions. Several years ago I read a book about death and dying and I remember I came away from it understanding that if you have no quality of life, you have no life. For instance, if you are in 'terrible pain' ALL of the time because of meds or disease and cannot enjoy life, what is life? I can't answer your question on what to do because each person has different views on what they feel is quality living. I am 55 now (not too far behind you) and I have not started the AI's yet, I will soon, I will make those decisions on the meds when I come to it. As of this moment I have alot less pain with the Herceptin than last time and I should be able to tell if the AI's are causing a SE or if it is the Herceptin. Once again, I will have to wait and see how things go and maybe even have to try several before settling on one or none. I will make a very large attempt to do so.
Hap, I think that you have been through an amazing amount of pressure with the three cancers, an accumulation of years of treatment meds, chemo, SE's and the emotional toll. May I suggest you do one thing at a time? If your physician feels a break from Herceptin is what you need then take that time and try again. Ask him to wait to do the AI's until after Herceptin is completed and if you decide to quit 'H' then work on trying the new AI. You have so much on you right now and it can (understandably so) overwhelm you.
When I went to my support group (general cancer, not just BC) two weeks ago I was overwhelmed with something and I shared it with my group, one woman nay sayed my feelings and then went on to tell me what I should do (what she did) and disregarded my feelings. A man ventured that if I wrote my questions down and got a second opinion (faxed to MD before the visit), that I could stop my endless researching and allow the professional to do the work (this is what he did). He said it would take a load off of my plate and leave the work to the MD. The woman and the man had two different views and I went with what I felt was best for me. I said all of that to say this, each of us will have differing opinions on what you should do, YOU will have to decide what feels right for you. We are not in your body and feeling what you feel and we're not in your head feeling the great distress that you feel. Know that we are all in this BC fight together and we feel your pain. Please continue to reach out to us here and to others who may be able to help walk you through this.
Love, Melanie
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Shelabela good to hear something from you again~ and you are absolutely right you deserve whatever you want after this. Take care and thinking of you and hoping all is good! Kim~
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Great picture Vicky and thanks for the words of encouragement!
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Thanks for all the kind comments. And the whistling!
Melanie, you really can't fix stupid, can you? However, I would probably say something to the Oncologist or at least the Office Manager about her comparison. It was cruel. You are somewhat down the road on your journey and maybe not as scared or as in shock as in the beginning. I am not sure I could have handled a comment like that when first diagnosed.
Vicky
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coachvicky, a delightful picture of you and your husband, thank you for the words of encouragement
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moodyblues, people are ignorant, she probably thinks she meant well.I do though agree with you that a receptionist in oncologist office, in case she does not know better someone of the doctors should have told her how inappropriate her comment was. Cherry
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Well Hap ... I would get in my car and get away for a few days. I would go see a trusted friend or relative. I would drink red wine and eat shell fish ... lots of shell fish. I would eat real pasta too (not this gluten free stuff I eat now!).
I will tell you the trip to Louisville did more for me emotionally than I ever thought it would. It felt normal. No one knew I had BC. DH and I talked about the new nipples but not about BC.
I will also share that my occasional visits to a Psychiatrist has really helped. He understand the medical part of BC without me reliving it and he offers some sound advice and great questions. I think I research a lot and can get wrapped up in all of this that it begins to get overwhelming. One of the first things the Psychiatrist had me do was identify some goals. He said part of my problem was that I could navigate this journey but I had not defined my end state (goals). You would think in my line of work I would have figured that out. (duh) I have been so consumed with just living that I was really existing.
Maybe a few days in a new environment would clear your head and help you decide what path you want to take.
Whatever you decide, I have your back. I will never question your decision unless you ask me for my opinion.
Keeping you in my prayers.
Vicky
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HapB, is it possible that your recent accident have caused some of your heart issues? Just hypothetically, it sounded like a pretty serious accident to me. This is hard to give advice, I would have given the treatments a try, I would have taken more treatment, I already feel that I have no quality of life, all this constant fear and feeling yuk, the treatments suck, I agree, and some people go on with everything and still relapse, and some doctors say maybe you do not anything more than a surgery, but they do not know who needs and who does not so they treat everybody. This famous professor I talked to pleaded both times that I should stop googling and trust them and I told him of course, I understand but I still have trouble to trust the doctors. Just as Melanie said, try to do one thing at a time, but whatever you choose it is your decision, no one should question it.Cherry
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Hap ... enjoy the pie, the walks, the beach and time to be with yourself.
Vicky
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