TRIPLE POSITIVE GROUP

Thanks for the post about seeing a specialist Special K. I think it is critical to get the help we want and sometime the Oncology Team is not the expert.

My Primary Care recommended a great Psychiatrist who (of course) knew the difference in PTSD and depression and could make the right diagnosis.

Guess what? I decided to get some "skin" nipples with the little extra skin I have on each breast, and then do the 3D tattooing. I just wanted something to touch again.

So I preregistered at the hospital for the upcoming reconstruction. The nurse questioned me about my medications. She said I was the only cancer patient she had preregistered that was not on anti depressants and she had never heard of PTSD as a condition for breast cancer patients.

Vicky

Thank you all, I am back from my infusion and had a chance to talk to the nurse and the doctor there. Since I have experienced the bad days when I was actually feeling better physically my nurse believes it has to do with the cortisone I get before the infusion but she also strongly advised to see the psychiatrist and deal with the underlying depression or anxiety, PTSD. They contacted the psychiatric department at the clinic and wanted me to see someone sooner, they seemed to be very concerned primarily because they were worried that it will affect my treatment in a bad way. I told them that I will be fine until Wednesday and will go with oxazepam if I need to. I will ask them to make an evaluation to make an diagnosis and then I will go along with my recommendation. The doctor in the clinic came back trying to tell me how Herceptin change the situation for those who are Her2 and if it would not work they have a lot of other targeted treatments and started to name them and I was like laying down there thinking, right it could only get better from here. He told about scans and everything and I just couldn't do it anymore, couldn't ask him anymore, I already know how it works and it was so hard to be reminded that they cannot say to me anything more encouraging about my situation.

PoseyGirl, thank you for reminding. I do remember this song, it was all over MTV in the beginning of 90-ies. It does not sound sloshy at all. I am just afraid of losing myself in all this. I look terrible, I feel terrible and I cry a lot which does no contribute to the looking better part. And then I look at my husband, how good-looking he is, knock on wood, well maybe not to everybody but to me he is, I also fell for his look even before we started dating, when I look at him I feel that it is just like I am not worth anything anymore.That they deserve to have it better. And I told him this today when he came from work to pick me for my infusion and he told me that he instead was looking at their accountant lady at work, who got her throat cancer a few years ago and did it all alone in the beginning. She was around 60, living alone, had a grown up son and I remember visiting my husband at work and how she just always came to me for a hug because there were a number of new young healthy women and I felt that she wanted to feel appreciated by someone who she knew longer than they did. Her eyes were like an animal's that just got hurt. My husband told me that she was stumbling her way in to work during chemo just because she did not wanted to be at home alone and how she shared her diagnosis with people and there was a woman who she did not knew very well, just an acquaintance and how this lady who lived in another country offered her to come and stay with her through chemo and she did. They became great friends and as a thank you she took this lady for the trip later. And my husband told me that he was looking at this accountant, how happy she was telling the younger women how she now was choosing between two potential boyfriends. Well I told him that potential boyfriend part was not so relevant for me anyhow. I like her a lot, it did not help me much but I am happy for her and it is another remind of how things do turn better after an ordeal like this. It is just such a long way to go.

I cannot imagine what I would do without this forum. It has been an amazing source of support.

Hugs,

Cherry

Once again, thank you all. You are my first choice of people to share it with and I hardly know you and probably never will meet in person. When this disease brings the best out of people and it is so badly needed by someone who is at the lowest, well maybe not right now but where I was yesterday, I cannot even describe how important this support may be for someone.

SpecialK, kae, Hap, Regarding the peanuts and other nuts and even some dried fruits like figs. I once stumbled on Sweden's national directives for cancer treatment, a very long document where one of the bc specialists I first met when I was diagnosed was mentioned as one of the board member. Peanuts as well as other nuts and dried fruits coming from warm rainy climate countries could be a potential cause of liver cancer because they were containing aflatoxin a product of a certain mold. basically all the nuts we eat were on this list. it was discouraging and I decided to decrease my intake of nuts.

I wonder whether the food and other stuff intake restrictions are contributing to the depression. What before could easily be achieved by a couple, maybe more on a Friday, glasses of wine while cooking a dinner and listening to music, what a relax it used to be on a Friday night or on vacation, it is now gone. While stressed I could take a very light cigarette, I know bad habit, but I had a lot of stress before, now the smoking is gone of course. Running a couple of miles a few or at least a couple of times a week, feeling good and strong, happy of endorfines, then coming home at telling myself that I am worth a little brie with fig jam, it could take away any anxiety and I was feeling great. We visited NYC this spring and i decided that I have to run Shuman running track in Central Park and I power walked there from Midtown, everybody were just running around me, it was like a competition. I run the truck once and then was just looking at it and thought well how often do I get to be here and run it again. While running I heard my youngest calling me, my husband and she rented two bikes and were passing by me. I was so happy. Two months after that I was diagnosed. And it feels like, will I ever feel like this again, will I ever be able to feel any happiness? I want to live healthy, I have quit alcohol and bad food, and will have to find another treats, do not have any idea what they would be. But now I feel that I have quit everything in my life and there is chemo, no hair and a diagnosis that got me of my feet and left me as a cornered animal.

Cherry I'm so glad you talked to your MO and they got you connected with the right resources. It's so important for your physical well being to get your mind on a positive track. I believe there is a strong mind-body connection and we need to find balance. Very hard to do with a HER2 diagnosis. This group is my life line....I find comfort knowing we're going through this together. You are much stronger than you realize and you will beat this cancer monster.

I found your correlation to changes in diet and depression interesting. I too used to de-stress with a few glasses of wine and comfort food (all the unhealthy stuff). I gave up all the goodies so that's part of my struggle, I don't have a "quick fix" anymore. What I find helpful when I'm feeling stressed is I go out to my car at work and meditate for 10 minutes. I go for a long walk and enjoy nature when I get home and that makes me feel better too. I recite all the things I'm grateful for - that helps lift me up especially when I thank God for my children, grandchildren, husband, friends and all the cancer warriors in this group!

I believe you will run again and you will be able to do all the things you love to do. Chemo will end, the surgeries will be done and you will move on. It takes time and I'm finding you need patience too, but it will come. Never give up!

Hugs to you 😊

CoachVicky, I'd ask for a photo of your new nipples, but that just sounds weird lol. It sounds like you will like the results!

Cherry, will pm you back

SpecialK, have you read the studies about Paclitaxel and the link to metastasis? Have you ever talked to the medical establishment about this? Someone in my local FB group posted a link. I've heard about this, but just never wanted to know more

coachvicky - Please keep us posted on your satisfaction with "skin nipples". My biggest concern is how obvious they'll be under clothing. The 3D tattoos are nice, but I'm just not sure it's enough for me.

PoseyGirl, I think I saw this article too, is it possible to post the link here? What about adjuvant paclitaxel that is given after surgery and the tumor is removed?

HapB, I have a wig, it is of natural hair and was very expensive, not thousands of dollars but still a lot of money and insurance covered 70% of the cost. It is very beautiful and reminds of my natural hair, I had a long one before. I have initially chose another, less expensive, although I could not really chose between those two, and once they were going to dye it there was no way back. However, when we came to pick it up, I saw the lady had this more expensive wig there as well and she told me that if I still wanted it I can have it. I tried them several times and we went home with this most expensive one. It was very kind of her. I have not worn it anywhere yet but I tried it on for my manager when he stopped by last week and told him that it was that much of tax-payers money invested in it and he said that it was best investment ever and he is glad he could contribute. I have the best manager, a former colleague, so far he was more in all the aspects than I could expect from him, very supportive. I have a lot of pimples on my forehead that are turning into zits and this is very frustrating sort of not worth that wig, and my eyes look so awful of all this crying that I cannot look at the mirror.

And do not underestimate your cat, mine was laying on the table by my computer, spinning, rolling on its back just like a seal and at the end it rolled of the table, it was funny, and I do not remember feeling that something was funny in a long time.

They did indeed postpone my treatment for 9/20/17 and have re-scheduled for 9/27/17.  I have had this happen once before and that extra week helped me a great deal to build up strength for the next one.  I guess postponing this one feels a bit harder because it would have been my last chemo (TCH) and I was looking forward to being done.  I will have 6 more infusions of just Herceptin after that.  I WILL NOT let this postponement depress me and will look at it as a chance for an extra week of rebuilding strength.  

I pray for God's presence as I finish up these treatments and go forward as it has been so hard to concentrate and stay on task since I started chemo.  I try to read my devotionals, I read AND re-read and read again because I cannot absorb what I have read!  It is frustrating to not be able to concentrate and remember what I have read.  I start to pray and get lost, only to start over again.  I know that He knows my heart so, I try not to let it worry me too much. 

Cannot wait till I am through with chemo!!! 

Melanie

(cross posted)

Soxfan75, PoseyGirl, Deni1661, and All.

Here is the rest of the story. A friend (12 year survivor) was helping me clean house. It was a "you show me yours, I'll show you mine" moment. Her Plastic Surgeon took 1/2 of her non cancer nipple and used it to reconstruct the removed breast's nipple. Her nipples are small.

I talked with my Plastic Surgeon and told him about this. I shared how I liked how small the nipples were but still big enough to have texture and feel at touch. I think mine will end up about the size of 1/2 of a number 2 pencil eraser. So, I am not concerned about them poking through my clothes.

The 3D tattooing will give the illusion of a larger nipple.

About Vinnie Meyers and 3D tattooing ... He will not tattoo a woman until she is 5 months from any treatment. Aside from his location in Maryland, he also goes on the road to places like New Orleans, Birmingham, Al ... . The price in Maryland is $800 for two with a $400 deposit at the time of scheduling. The price on the road is $1,200.

Because I am in an HMO-type insurance, I had to have a referral. I shared previously that my referral is for "durable medical equipment."

Here is the CPT Code my Primary Care used for the referral:

11921RT 11922LT.

The phone number to schedule is 410 876 4638.

Conversations with the Tattoo POC, shared that I will leave with an invoice and this code can be put on the invoice. The POC also said to expect to file several times with my insurance before they will pay.

As for pictures, I had to send in photos of center, left and right shots to the tattoo shop as well as answer a questionnaire about what procedures I had and when. Just the boobs in the pictures; no head( thank goodness). Frankly, my boobs have been photographed so much since this all happened I am immune to it.

When I am all done, I will pm pictures if you want to see. It won't be until March 2018.

Hope this helps.

Vicky

HapB - I got my wig after taxol #4. Its important to do before you lose a lot of hair, so they can match style and color to your hair. I paid $550, not covrred by insurance. It matches my hair color and stylist trimmed it to match my style. I'd say 95% of people had no idea its a wig, even my mother and siblings. Mom kept saying, you must have gotten your hair done, it looks nice. Finally at week 12 I admitted to her it was a wig. My friends compliment me on my hair, they look shocked when I admit its not my hair! I wear it 100% when i go out in public. At home i go bare headed or bamboo hat if its cool. My hair has started to grow (4 weeks PFC) it thin and fuzzy, all grey. But have noticed that eyelashes and eyebrows getting very thin, didnt lose them during chemo!

I used a wig during my treatments. I just couldn't handle being completely bald in public. I admire the ladies that can and do. I went and picked it out before I ever started my treatments. I had a few close friends to go with me and help pick one it out at a local store. I think it was a little less than $200 and it was covered by my cancer insurance. I wore it when I was in public and most folks had no idea it was a wig. It matched my hair color and hair style at the time pretty well. I had my last taxol treatment in October of 2014 I think and I think I finally stopped wearing it the following March maybe. My hair had grown out enough to cover my head, but was still very short. My hair came back with lots of curl to it when it returned. I had never had curls before and loved it. But eventually it went back to it's normal straight texture.

shelabela- I used Mepitel. My skin held up really well. It wasn't supported by my radiation onc (he didn't say I couldn't, just didn't suggest it, either) so I had to pay for it, but it really seemed to work. After treatment I shared all the studies with them on how it is supposed to be effective. Great that you are getting that as well as proton! There were a lot of people using Mepitel in the radiation thread when I was in treatment.

Meow.  Sorry that you find yourself here but know that this is a good place for encouragement and support.

Melanie