TRIPLE POSITIVE GROUP
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Coachvicky - love your post! My cancer wasn't as bad as most of the other members but since I didnt finish all 6 rounds of chemo & only had 7 rounds of herceptin...... I am not a worrier, nor live my life in fear but every year at mammo time, it would be no great surprise a that the cancer is back. I'll never be "blownaway" in shock over a cancer diagnosis again!
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Hi-- all chemo is finished-- and waiting for an MRI that will show if the tumor has shrunken in the left breast and then if there is something else going on in the right - if so assume they will biopsy and then set a surgery date--
Cant decide if I should do a lumpectomy or double mastectomy with reconstruction. Saw the post that said they were thrilled with their reconstruction but isn't there a touch recovery?
If I understand, if I get a double mastectomy, I do not need radiation?
Everyone has told me the chemo is the worst part and that is over but when I think of a double mas- is that true?
When I spoke with plastic surgeon, he mentioned that if I choose a lumpectomy - radiation could deform the breast and then there is no corrective measures to take?
Plastsic surgeon showed me the hoops they put in the breasts and I cant imagine that they are comfortable for 3 months or however long reconstruction takes?
Someone said get reconstruction because then you wont be scared everyday of your life- someone said get a lumpectomy so you don't have to go through 6 -8 months of surgery........ Not sure what to do? Scared enough that they may find it in the other breast---
Will say that my emotions have calmed down a couple weeks after the last chemo and that is really helpful--
My surgeon seems to push the mastectomy since my breast is so dense- another doc said do what is the least invasive---- because its my breast- feel like I just get a politically correct speech-- any direction? I have two more weeks until the MRI and while that may help drive my decision, wondered what others thoughts-- thanks so much for any help or direction you can provide-
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Sportsmom16,
A double mastectomy is no cakewalk; Trust me.
I went to physical therapy before the surgery and when given the OK after the surgery . That helped a great deal in my recovery.
I had tissue expanders placed at the time of mastectomy. I wanted to wake up with something. I also had a skin saving mastectomy so I still have my breasts' skin.
I spent a few weeks with fours drains, my arms down to my side, and in those hot, awful camisoles. The first time my husband grilled steaks and brought me mine of a tray, I just looked at him. I did not have the strength to cut it.
My surgeon offered to do as many lumpectomies as I wanted. He said he could never promise me that he got all the cancer because my margins were not clear. His recommendation was a double mastectomy and I am glad I took that recommendation.
All of the above is in my rear view mirror.
January 20 I got my implants and I love them!
No more sagging boobs or ruts on my shoulders. No more worry each year at mammogram time.
BTW, my scars are on the underside of my breasts. When I look down, I don't see them. I am very fortunate that my surgeons thought this thru.
This is just my story. Others may feel differently.
Best wishes as you make your decision.
Coach Vicky
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Hi Sportsmom!
I chose a lumpectomy because my post-chemo MRI and PET scan did not pick up on any active cancer. In my case, I would have had radiation regardless of what surgery I chose. No, radiation didn't make my breast deformed, and no, I don't feel deformed because I have a small scar on my right breast.
I was just looking forward to the quick recovery and avoiding reconstruction. It sounds like Coach Vicky had an awesome reconstruction experience, but many women undergo multiple surgeries during reconstruction. I really don't need that in my life. I have twins with autism who require hands-on parenting. I have a full time job, and I enjoy my work. In fact, I went back to work the day after my lumpectomy (part time).
I was also looking forward to retaining sensation in my breasts.
I am not opposed to double mastectomies on principle; in fact, if I have a recurrence, I will probably opt for one. I just thought that you can always take off more later, but that once my real breasts are gone, they're gone.
Good luck!
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Hi ElaineTherese
My plastic surgeon and surgeon did provide me an awesome experience at one of the worse times in my life. I felt fortunate because my plastic surgeon's wife is a breast cancer survivor. I think that made a big difference.
You are so correct. Once they are gone, they are gone. It is amputation. I had to wrap my head around that when I made this decision.
Coach Vicky
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SportsMom, another consideration is whether you enjoy the erotic powers of nipple stimulation. That was a big consideration for me. I'm a single lady and sexual happiness is important to me. We are fortunate we get to make our own choices now. There is no wrong answer.
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Thank you it helps to hear from everyone--
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Interesting replies. I am extremely loop sided at the moment. One big boob on one side and nothing but a big scar on the other. I am looking to almost reduce my healthy breast to nothing but still keep nipple. I am hoping to get this done once i am finished with radiation and the Zeledron Acid infusion end Feb. Hopefully in March so it will be healed for the summer season. I am excited about being flat chested for once since I always had too large breasts anyway. I am also looking forward to have some kind of holiday in the mountains of in South of Spain. (if everything goes well) We also receive a stay as a part of the treatment to a rehab/spa facility for 2 weeks and I will definitely take advantage of that as well once this is a bit more over. I do not see myself working anytime soon. Priorities has changed. Life will never be the same.
Today I found another "lump" right under my collarbone. Will for sure ask about that on Monday. I received some heavy anti anxiety pills and taking advantage of them too but they make me a bit tired. Thank you for being there ladies.
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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....
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we will take this journey together! 😘 I start chemo February 23rd now. Just had additional surgery to clear margins and had port placed, so they pushed me back to 23rd to heal some more first!
Scary ride that I am sad and angry to be on AGAIN!
Daniella
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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 -
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Sportsmom,
There's no single way to cope with cancer, so I can't tell you that you ought to "just get over it." I know you have meds for anxiety; have you ever considered an antidepressant? I got on Celexa when Aromasin was making me blue, and I feel much better. I certainly wasn't going to spend 5 - 10 years, depressed doing hormonal therapy. It might also help to talk to a counselor who understands cancer better.
I think it's OK to be undecided because it means you're carefully weighing your options! Also, you might talk to another medical professional about the radiation issue.
Best wishes and ((HUGS))
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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
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will start TCHP next week possibly as soon as i have my 2 d echo..i am 44 y/o mother of 8 y/o twins. to those who have little kids, were you able to continue caring for your kids? i know we all react differently to chemo but i am hoping i will still be able to atleast pick up kids from school, homework, drive them to some after school activities and just wait in the car, and most especially cook.. as long as i am able to do those, i am all good. hubby can do the rest like cleaning toilets,etc... my Mo said i will feel like " i got ran over by a truck", and that even if i dont feel like it, forcing myself to get out of bed and atleast walking will help me. thanks!
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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
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Kae,
I was able to keep up with my kids in general, but I did get help from friends in picking my daughter up from various practices. I would cut yourself and your kids some slack. My sons regressed a little during chemo. They'd been fully potty trained since age 4, but during chemo, they became night bed wetters. I didn't have the energy to change their sheets every day or deal with their behavior. I just put them in pull-ups overnight and figured we'd deal with it later. That's not ideal, but you just do what you have to do to get through.
Friends brought dinner on Wednesdays; that was very helpful to me because my husband worked late on Wednesdays. Otherwise, I managed the meals, though they were basic in nature.
Best wishes and ((Hugs))!
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thanks elaine and pamela!
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Sportsmom, how are your nodes? If the cancer has reached them, you'll almost certainly be offered radiation regardless of whether you choose mastectomy or lumpectomy. My RO mentioned women who have had mastectomies are harder to treat with radiation and tend to have more skin troubles. Having had a lift after my lumpectomy makes it easier for them to do rads on me. The breast mound does not lie as flat as it would have done.
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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!
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it was suggested to me from https://community.breastcancer.org/member/214196/p... to join this group. As my breast cancer is triple positive. I had my first round of chemo yesterday. I didn't think it would hit me so fast. Boy of boy is it hitting fast. Waking up like I haven't slept. I woke up with mouth sores. Nausea. I'm so tired I won't be awake for long again. But I wanted to at least just check in here. The dr say it's going to be around 14 days from my first treatment for my hair to start falling out and def by treatment number 2. They are cycling me every 21 days for chemo. 32 years old and having breast cancer and a single mom of two daughters ages 6 and 12 is not easy. Any advice? How invasive is the taxotere? They wouldn't even put it in the same tubbing as the other chemo drugs. Any and all advice is solicited. Thanks ladies. I hope to find more support here. Also, how long was everyone's ports sore for? Mine was surgically installed on 2/9 chemo on 2/10 and I feel like a druggie taking so many pain meds because it hurts like hell. Ice helps a lot in coordination with the pain pills.
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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-
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Sportsmom,
I read your post and if it is any comfort, your reactions seem normal for anyone on this journey.
I think chemo brain is real and messes with your mind or at least it did mine.
Hang in there!
Coach Vicky
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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
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I 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. 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.
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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.
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HI-- thanks for responding- they told me the nodes look clear but there is no way to know until they do the surgery- is it just a guess then? Both the surgeon and the plastic surgeon are pushing for mastectomy but my second opinion doc seems to favor lumpectomy. He mentioned that the rates of return are the same and why would you put your body through more than you need to -- sounded very rational. Then my surgeon said- oh my gosh your breasts are so dense- why would you want to go through that worry every 6 months?
I know its my body but cant help but believe there is not a best practices --or something written down that we can refer back to-- I mean this happens all the time right? I know it is my choice - but it took me months to decide what shade of beige to paint my bedroom!!!!!???-- trying to decide to cut my breasts off is driving me nuts!!! -
I am a worrier and they seem to think that this will be less worry for me if I go with mastectomy-- don't mean to ramble - just feel like I only get 1/2 the story sometimes
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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.
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hi sportsmom, i am new to this group so i am only sharing what i know and feel so far. i have bilateral breast CA and my surgeon did tell me we could go for a lumpectomy if i respond well to neoadjuvant chemo to start next week. he did mention that i will probably prefer to have BMX since i have cancer on both breasts. although he said it is up to me to decide.. right now , i am leaning towards BMX. genetic testing will be done and of course if it is positive i will for sure go with BMX and most likeky oophorectomy ( that's another story though).. this is what i feel right now.. goodluck on your decision!
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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!!!!
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beautifully yeah you found us! We are a lovely bunch here...I just wanted to say that if it burns when you pee, you may have developed a bladder infection. I assumed burning pee was a side effect of chemo, and put up with it for a few weeks, only to discover that it was a bladder infection when I mentioned it to my doc. You should call your MO.
My kids watched a TON of TV while I was sick. There were days we all curled up into my bed together for the day. You are not going for mom of the year here. You are going for "I made it through the day." My kids returned to our normal routine after chemo was done with no issues.
Keep up with the biotin. But it sounds like you maybe aren't drinking enough water. Water water water water water...
Hugs!
Pamela
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