TRIPLE POSITIVE GROUP

Thank you it helps to hear from everyone--

I asked my first onco if I could forgo chemo and rads if I just had double masectomies and was told no, I would still have to do both. I went with a lumpectomy, then had a re-excision - both times, margins had cancer cells. Afterwards, I would have felt safer with no breasts since my chemo and herceptin were both cut short, no pun intended....

This is why I am still confused-- had one doc say that if I had mastectomy no need for radiation- had another say that I would need radiation regardless? Do different docs have different protocols? Sometimes feel like I am buying a used car not deciding on breast surgery! Know everyone is trying to help and know every case is different and that everyone is trying to be so kind and helpful-so why cant I just view this like a appendix and move on??? In reality is the C-word so powerful that it controls us?

I am truly, truly, truly grateful for the chemo that kills it and that our prognosis is good. Then why do I get so upset? Is it just the drugs and the hormones? Am trying to focus on the positive aspects and that these measures will save my life--seems so simple- really a no brainer. I am seeing a counselor but he never had cancer and have some pills for anxiety-- but they are no magic bullets --

I know its my choice to chose the positive. I do try everyday -- is it just time to stop whining? Give it to me straight - I am really tired of how I am feeling and the indecision- plus its been 14 days after my last chemo and I still feel miserable -- didn't feel this bad prior?

Sorry to ramble -

The cancer center I go to has counselors available who are super knowledgeable about, or some have had, cancer. I would recommend contacting your local cancer society since they subsidize or provide service free of charge. Do you have a nurse navigator? They usually have a ton of helpful info. Don't settle for good enough! Keep plugging along until you find a good match for you.

Another thought - the idea that we should be calm, happy and grateful is a bunch of bunk! We have cancer thereby have earned the right to feeling fearful, sad, etc. It becomes a problem when it overwhelms you ona daily basis. For me, sometimes just talking about how I am feeling helps. Validation of feelings is very empowering in the quest to let some things go. Do you know a good listener or have someone who would be willing to give it a try? You can always run feelings by other people here & pretty much be assured that someone will reply.

Go easy on yourself Sportsmom! Chemo is rough but it will eventually be over and just a memory! Hugs

Kae

My son was 8 when I got diagnosed, my daughter was 2. I worked all through treatment. I had a nanny who was doing the kids laundry. But when I came home from work, I did cook for my children, I helped him with his homework. Most of the time I didn't want to eat, and food tasted vile. But I prepared meals and sat with my kids.

I had to "just sit" at activities, but my son understood. (I couldn't play dodge ball at the end of his karate class).

The only exception to this was day 3 after chemo. I felt awful on day 3 (had chemo on a Friday, and my Monday was terrible). My hubby had to take over on day 3.

Hugs. My two year old was wayyyy harder to manage, she was still in diapers and it was a physical job. 8yos can shower and change their clothes and get their own snack :-) you got this!

PM me if you want to talk.

Pamela

thanks elaine and pamela!

I have just found this forum and I just want to say your ladies are a FANTASTIC bunch. I was mad, sad, scared and I am old enough to be many of your mothers and am not trying to deal with all these decisions along with the needs of young children and work. Also have a wonderful DH and a great support network. I chose to be very open about my diagnosis early because my lump was found on routine mammogram and I wanted to make certain that all my friends and relatives were doing their annuals. The stories I have heard from long term survivors have been amazing. One of my friends must keep my schedule on her calendar because I get a note from her that night. And one just made an appointment for a long overdue mammogram.

My experience says to reach out and ask for the help you need, whether it's emotional or picking up the car pool or a loaf of bread. My nurse navigator has been great - a young survivor herself. Maybe NN can suggest a therapist/councelor who is more familiar with BC issues and concerns. When I was dealing with another health issue a number of years ago, I went through 3 therapists before I found one that clicked. I know in the Phoenix there are volunteers who will clean your house post surgery if you need that kind of help.

So... this is a long first post but I am in such awe of you and your strength and courage that I wanted you to know that!

Everyone is different but my first time was the worst. Take L-lycine for mouth sores an brush you teeth and rinse with baking soda and water after every meal or anytime you eat something - as tired as you maybe- it is worth the effort. it got better after the first time. I also took Imodium after the first round of diarrhea== then a couple days later would switch to a stool softener to reverse the effects.of the Imodium After the second or third time you get it down. -- don't give up -- its not so bad once you figure out how your body will react.

You can do this-- promise- you will need some help for meals and moral support. Just remember its a year of life so you get a lifetime of years. it is worth it - try to eat as healthy as possible and drinks lots.. Smart Water from the healthfood aisle helped me - I also took Emergen-C that helped me get 8 ounces of water down easilty.

Do the best you can - nothing is perfect but water helps. -- you can do this - Try to get someone to bring in meals at least once a week if not two, That's enough because some of the meals you get are kinda icky and not healthy. You can also get healthy soup for yourself and something less healthy your kids can eat. This is not mother of the year time- its survival - everyone will come out the other side all right - there are a lot of apps on the internet for meal sharing where folks can sign up. Say yes to whatever help is offered - (I hated this part- but I needed help) You and your kids will come through this-

Hello, Your diagnosis sounds very similar to my recent news. I will begin Chemo this week. I am ER/PR+ HER2U+ BOTH breasts!

Your regiment is the proposed treatment for me, 61 year old active and healthy female. I have an appointment at MD Anderson Cancer Center February 23rd for second opinion on regiment. I will investigate whether I should take the first treatment locally or wait until I return with their analysis. Any advice is greatly appreciated.

Leebo

found out after the fact that the first dose is what they call a "loading dose" -- twice as much as you will get on subsequent treatments. I had terrible stomach pains but started taking Prilosec every day and that was a game changer. You should start taking the Prilosec at least a week before your first treatment. Also.....if you're getting the Neulasta shot, you should also start taking Claritin for the bone pain. The chemo and the anti nausea meds can cause either constipation or diarrea. If it causes constipation, take a stool softener each time you take an anti nausea and you should be fine. I used Penguin Cold Caps so I have kept about 50% of my hair but lost of my eyebrows and eyelashes at the very end - treatment #6.

Sportsmom,

It really is up to you! Your surgeons have touched on one concern, namely how you would feel getting mammograms every six months if you get a lumpectomy. I really don't mind getting mammograms, personally. To me, it's just one way to monitor for recurrence, and I'm glad to have someone check out my breasts every six months. However, if getting mammograms every six months will make you anxious, maybe you should consider a BMX. I've heard many women here say that they're happy that they'll never have to get another mammogram after surgery.

I know the initial dose is the loading dose. They explained that to me very well.I started on 2/10. Needless to say I'm exhausted. My tounge feels like someone took razor blades to it. I've been suing the biotene rinse with no avail! It's miserable! I'm exhausted. My vagina (sorry for tmi) feels like it's turned into a sand pit, (coconut oil). When I pee it's hurting like ouch! Like what is this! Im taking Prilosec in the am 20 mg and then randidine 300 mg at night because I already have acid reflux.I'm completely exhausted and feel useless to my children. To boot my Port still hurts. I'm miserable and I just want to curl up in a ball and cry!!!!

Dear Beautiful-- I had the same response-- felt like it was acid when I urinated-- I started using free and clear wipes and that helped. Don't despair-- this does not last more than a few days. Someone mentioned bladder infection and that could be - but I just felt like skin was burning off. The wipes help and so did warm washcloths.

I too feel a lot of guilt about my family and what this is putting them through and how little I can do some days-- but it is not forever. Everything looks worse when you feel miserable-- don't despair- I know its easy to say but I have felt just like you described and you will make it.

Curling up in a ball and crying might help. Someone told me my tears were helping my body heal and get rid of the toxins. At one point, I believe I could of stopped the drought in California if I had just moved outside to cry- its ok-- you can do this- sending you positive energy and most importantly sending you hope- you will make it - your kids will too- just at a really hard point - don't give up-- you can do this

I had double mastectomy and now have implants.

I will still have mammograms and breast MRIs for the rest of my life. My first mammogram will be in six months in June. This is FDA mandated because of the implants.

I was surprised when ,y surgeon told me this. But then, I have been surprised at something all the time since this journey started

Coach Vicky

Thanks SpecialK,

I see your note as information and certainly not argumentative.

I just didn't want anyone else as surprised as I was with what my Plastic Surgeon gave as future directions.

Frankly, these implants, although a wonderful outcome, were far more detailed than I had researched. Not only did I have to read the manufacture's book on my type of implants I also had to take a test showing that I understood this!

In many was I am very grateful for all the detail ... just really surprised. My warranty book (Allergan) states "the current recommendations for getting screening / preoperative mammograms are no different for women with breast implants than for those without implants." These are diagnostic mammograms not screening mammograms. And, yes, as your write it takes special techniques, technologists, and radiologists.

So, it seems it may be the type of implant and the plastic surgeon. I had skin saving surgery and that, too, may be a factor.

Coach Vicky