TRIPLE POSITIVE GROUP

hi Cherry, I'm so sorry if my post sharing that I thinkyou have good statistics suggested that I think your anxiety is less valid because you are a lesser stage than I. That was absolutely my last intention.

I want you to know that I am here one year, two months after diagnosis and still regularly feel in shock, grief and immense fear. It's constantly on my mind and I know that no one can tell me the words I want to hear. Don't ever let anyone make you feel as though you should be "over it" if you're not. I lived in complete panic and despair for six months solid. And then after that, I was still a mess.

Yesterday, based on this horrible wave of despair, I wrote to a few girls that are on my FB group page I started in our area. They all had similar diagnoses to mine. Every one of these four women wrote to me saying that they never looked at stats, don't want to know them, and have worked hard to find happiness in their various ways...through family, through prayer, etc. They for some reason have found more solid ground than I. We are all different in how we process things. I have always been a person that falls down rabbit holes when threatened; I have a counsellor I see to discuss this. I sometimes honestly don't know how to do it. I am excellent with trying to get active in many ways, but my emotional stability and security is just on this knife edge.

So all that to say you're not alone. We are on an epic journey toward finding a zone in the midst of a catastrophe. It's like a transformation of self, and I think some tend to accept and transform in different ways. We all transform, but I personally have had a very painful time accepting my new reality. But I'm working my ass off on it and people here and in my life help.

On the parenting thing, this has been immensely challenging as I have an 8 and 11 year old. I was always open and I do say the cancer word. I tried to "normalize" it for them to reduce their fear. I've tried to hide my breakdowns so as not to alarm them, but theyve also seen tears as they need to know that this is human. My counsellor has said that my approach and reality with them is teaching them resilience. I do feel I have managed my parenting role well so far. I was pretty shattered the night before surgery when both my kids showed some distress and worry. I lay with each of them individually and we worked through it.

I am currently at my cottage and trying hard to rally myself and regroup. I am not going to continue researching for stats; it makes me ill. Instead, I am reading "Radical Remission" as well as another book. I have to stop filling my head with bad. I will not get the assurances I want. I want to be here for my kids and will just do everything I can to increase those chances. I will also pray that nanotechnology and immunotherapy make some leaps and bounds soon; these are the next beacons in the upcoming decade of breast cancer treatment (so I read).

Well, that's the longest post I've written. I'm so sorry. I hear you, Cherry. You are normal, I am normal, and I believe you will find your solid ground. Xoxo

PoseyGirl, I did not mean to say anything so you feel you need to reply you are sorry that what you said made me feel this way. It is cancer that makes me feel this way, to be able to vent my fears here, well, I had been sorry if I did not have a place to pour it all out but I believe I already said it a thousand times. I will sign under the every, every, word you wrote, this is exactly how I feel every day and as I realize I will be feeling many months if not years forth. This and the uncontrollable fear that just hits me when I think that this cancer happened to me are causing the breakdowns when I just lose my sanity to despair telling my husband how can we live like this, who can live like this?!

I will be meeting another oncologist through another mom in school for the second opinion tomorrow. At another of our three clinics, this one is known for their very compassionate oncologists, something I did not know before it all started, but I never needed to know it before. I believe I, due to my enormous anxiety, will meet a doctor who is prepared how to tackle my condition. She wanted me to write down all my questions and when I was trying to make a list I knew that it was exactly as you say my only problem is no one can tell me the words I want to hear. And this is when they want to involve a psychiatrist and discuss drugs and quality of life so they can make me feel calmer in artificial way. Like it would solve my problem, and nothing can solve it, and here we go again, this is too much for my brain to handle. I have also been paranoid when it comes to health, and about falling down the rabbit hole has also always been my thing. But because before I always received doctors reassuring words that everything and I will be fine I could go back to my normal life until I got cancer.

I know all of us are struggling, I want to be one of these women in your FB groups, I red so many blogs and I see that people who only focus on what their doctors are saying to them are handling it much better but I unfortunately am not one of those.

I am going for my second Taxol today and thank you for your answer, I will also read this book, as I am reading every article someone ever posts here. I now understand why people are on this boards for years. I will try not be such a wuss all the time /Cherry

I like to ad to my comment that this group and others on this website has helped so much to just go threw it and continue to go threw it so thank you all wonderful members for all encouragement, knowledge and wise words at all hours, day and night. I have been on here during many sleepless nights..It is so important to have others in the same situation that understands. Lots of love and strength to all.

Rozem, Great news I hope I am going to be doing the same...log in here in 5-6 years time and still be NED...:)

Rozem, I live an hour away from you. Sounds like we are the same age (I'm 48) and I have two kids

I appreciate your uplifting words, ladies. Nodal involvement flips me out, bottom line. I know that personally, if this were caught 6 months earlier and I was 2a, I'd be feeling in a better spot emotionally. But c'est la vie. I did all I could to be preventative about my breast health (I always had a voice inside that was concerned about my right breast)...so now it's about moving forward and doing my best. I am sure talking to your mom would have been very insightful, Kattis.

Cherry, you should start a FB group for women local to you. We have 32 members since April, and are looking at organizing a get together. People post daily and since we're all treated at the same hospital, we can share and cross reference.

Rosem, so happy to hear your good news! Please log in every year and I pray your news will always be good, Cherry

You will meet more women as you go threw the treatment Cherry-sw...I PM you a FB page and a great support organisation in our area as well. I use to live in the US for 20 years so found it natural to connect with an American group as well. Also I find it interesting to compare different treatment plans as I know they are a bit different here from the US, Canada etc. not saying anyone is better or worse than the other. Having support is the most important thing regardless from location and this group is much bigger than any I have come across with the trippel plus. Also it was so helpful to fill in the signature learning about my cancer plus enjoy a lot of other links here with other specific issues that might come up. Yes my interview went fine...now I have to wait...but feel I need a change and have nothing to loose thanks to my cancer..:) I wish I could just retire but it is a bit early for that..:) so a new job seems like a good idea and happy I can look forward and start planning a few things for the future again. Just saying if I can get threw this first year...anyone can..Eleine Therese..happy to see you here and your posts have always helped a lot...

Here is an article for you to read about nanotechnology and I will be happy to keep posting, Cherry

https://www.cancer.gov/news-events/cancer-currents...

Hopefully human trials start this year and succeed. Not sure how long a trial like this would have to last before being approved by the FDA...let's hope less than 5!!!

Hi Hap

Yes, I had both ILC and IDC. The ILC was not HER2+, but ER/PR+ It was the IDC that was TP. I had FEC-D for the first bc - treated for the IDC. I'm in Australia and our standard of care is slightly different for TP. I only had 2 infusions of the Docetaxol (Taxotere) though - it nearly killed me. The second dx I had ACT and could only do 3 infusions of the AC (Adramyacin and the Epirubicin, the E part of FEC, are both from the same family - and there's a lifetime dose limit of 6) The Taxol was so much easier on me than the Docetaxol so I was pretty happy about that.

I too had really, really thick hair prior to bc. I wear it short, and get it cut every six weeks. I'd have to have it thinned every time I had it cut.

I never have it thinned now. It did grow back - slowly while I was on Herceptin, and then when I finished that it took off and grew quickly. The second time I lost all my hair, it started growing back while on Taxol - but fluffy stuff that fell out, and then my real hair grew in. It's a LOT thinner than it used to be, but there's enough to cover my head. My hairdresser notices I lose a fair amount of hair when she's cutting it, but it does seem to grow back. It just won't ever be as thick as it used to be. Actually none of the hair on my body is as much as it used to be. I don't seem to have any under my arms, and the hair on my legs is sparse too. The AIs can thin your hair.

I can tell you that getting that second dx was probably the worst thing I've faced. I knew exactly what was in store for me. I assumed that it would be TP again - so the TN dx was a kick in the stomach. I decided I wasn't going to do chemo again - the first time was so hard. After a couple of days, my inner "glass half full" asserted itself and I decided to give it a try. I must say though - my onc had to push to each treatment for the first three (the AC didn't agree with me at all). While Taxol was a lot easier - my liver started to shut down halfway through it, so we had to delay chemo. But finish it I did, and now I'm glad I did.

Trish

xoxo

So I have a question that I asked my Onco..... I have never had acne before in my life and about a year ago I started breaking out like crazy. I wrote it off as stress. I switched jobs, lost both parents and other things. So in January I was diagnosed as Trip + With very high ER and PR levels. Could that have anything to do with my breakouts...??? Anyone have thoughts or a site I can go read about?

My Onco really did not answer my questions., she just told me that if I wanted she could set me up with a dermatologist. Like I want to see another dr.

Thanks Hapb,

The last 3 years have been horrible. I would like to start them over.

SpecialK

I did not think they were connected but who knows. I also never thought I would get breast cancer. I appreciate you explaining this to me. It just seemed so odd that I get acne now and never did when I was younger. I suppose my skin is changing all the time now. From the cancer and drugs and age. Getting older is not fun. I would like to go back and play in a blanket fort again.

Shel

Shelabela, I'm so sorry to hear of the loss of your parents and the tremendous stress you were under. I personally believe that stress has a lot to do with breast cancer and creates an environment where it can grow faster. That's just my opinion, definitely not based on science or fact.

I also believe that, for me, my estrogen levels have been out of whack (high) for a long time. A few years ago, my ob/gyn had me get a hormone test because I was experiencing symptoms of pcos, but there were no cysts found upon the ultrasound. I did all kinds of research into it and she agreed that it might be estrogen dominance and she had me get a hormone test. My estrogen levels were high, progesterone was low and testosterone slightly elevated. I was supposed to get additional tests at different times of the month but life got in the way and I never followed up. I got a new job; one with lots of travel and responsibility and I let the testing fall by the wayside. I believe the stress and the high estrogen created a perfect storm for this breast cancer and that's what got me here.

I have dry skin but occasionally break out with painful pimples. I have found that tea tree oil works well for my breakouts. I also have heard that Proactiv works great too. It sucks that we have to deal with all these additional problems. Like cancer isn't enough! A blanket fort sounds like a fantastic idea.

You know what I hate, hate, hate about BC? I hate that it hits you younger women. I'm not crazy about having it at 65 but it just seems so damnedly unfair that you're having to go through this when you're so much younger. I know things happen when you're younger, first hand - I lost a child when I was 27 - but this just isn't the way things are supposed to be. It just makes me feel so sad and resentful.

They were always my go-to place when i was not happy as a child.

Thank you PoseyGirl, will start reading at once. I asked another oncologist today about immunotherapy and according to her it is in the research stage but will be mostly beneficial for triple negative.