Calling all TNs
Comments
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To all who are facing a mastectomy. After the initial shock and grief comes a period of calm acceptance. To mitigate the loss I promised myself I would have better looking breasts after than before. Got a great surgeon and plastic surgeon. 6 months out from surgery I went to Vinnie for nipple tattoos. My breasts now do look better than before! Scarring is almost invisible two years out and you can only see them if you get below my breasts. The loss of sensation is a kicker for sure.
If you have time to do some gentle yoga targeting range of motion before the surgery, it will pay off in recovery.
Hugs to all,
Peggy
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Peggy thank you! What type of ROM, I'm assuming shoulder? I see you had nipple reconstruction, are you happy with it? I have to ask my surgeon but maybe someone can tell me, why is it that sometimes some women can't keep their nipples? I'm going to miss mine :-(
I'm finding it difficult to accept the thought of loosing a body part. I'm happy I have some time to get use to it and appreciate knowing that I'm probably in the shock/grief stage. I look forward to the calm acceptance. I have to stop being so emotional about this- put on my big girl pants and fight! I guess today is just a blip in my normal spirit. Tomorrow will be better
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I've been on a road trip for almost two weeks with my hubby to celebrate one year since my diagnosis and have been playing catch up on this thread, but there is SO much I want to say.
Shari, You are in my thoughts and prayers. I can tell from your postings that you are strong, spiritual, and you have the positive attitude that will serve you well. There are other chemos out there that have been proven effective for TNs - carboplatin for one, is being used very successfully on many TNs. Stay strong and know that everyone here is in your corner and willing you with all we have to get through this and be victorious on the other side. Having a recurrence is a bummer, no sugar coating that. However, it has not spread!!! What a huge blessing that it is. You will do well. I just know it.
Greenae, Ditto for you sister! You. Will. Do. Well. I can tell that you are a spitfire too and have a great deal of resilience. Yes, it's a curveball to have to adjust now to the idea of a MX when all along you were certain it would be the LX, but it is all doable. One step at a time. Don't beat yourself up about causing your cancer. I had the world's healthiest lifestyle and I got it anyway at the ripe old age of nearly 67. I'm here to tell you that even at my advanced age, I did well on chemo, rads, the whole ball of wax. I realize that others had more troublesome side effects, but many, like myself, were able to tolerate well and exercise daily during the whole mess.
I don't know how many of you follow the Triple Negative Breast Cancer Foundation website - www.tnbcfoundation.org - but there is a new thread now on a promising new clinical trial at the Mayo Clinic in Jacksonville, FL, for a vaccine to prevent the recurrence of triple neg bc!!!! http://www.usatoday.com/story/news/nation/2015/02/03/mayo-clinic-triple-negative-breast-cancer-drug-trial/22785941/
My daughter also saw a short piece on the Today show while we were away on this trial. I think there have been other articles as well. The article implies that the trial may start soon, as in this year, but there was some scuttlebutt on the TN website that it may not start until 2016. I've just sent an email to my MO to ask if she knows anything more about it.
Paula
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Thank you so much Paula! It seems most trails are not offered in Canada and every time I ask my MO she says there is nothing that I would benefit from. She is not even encouraged by the metformin results. She did mention that she will discuss with the others the possibility of one of the platinum chemos. I'm not getting my hopes up but will try and stay positive that my MX will get rid of everything this time but it's hard knowing that even with the high dose chemo and radiation- some micro cell survived and was able to proliferate. I hate this! Sorry I guess I'm having a down day.
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Dear Shari, You have a right to have a down day. But I can tell that you have already evolved from initial shock, and you have gone into fighter mode.I hope everyone here will join me in following this promising new trial (whenever it starts) and perhaps talk to our MOs about it. Knowledge is always power. Wouldn't it be wonderful if a vaccine against recurrence is within the realm of possibility!! May we all live in nothing but an attitude of hope.
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Peggy and Paula
Thank you so much for the info, support and advice. Shari, it sounds like you are having today, what I had friday nite and all day yesterday. Funny, I just told my mom and other sisters, and I feel Much Calmer. I think I am so worried about telling friends and families, will be more upset by their reactions...that I make myself crazy til I tell them. I think I have to accept the changes first, then I am able to talk about it with others. Thank God for the 2 close friends that got me thru fri nite. DH doesn't know what to say or do, but he is improving...lol.
So, let's rent a Winnebago and pick everyone up, and Road trip to Jacksonville...I want in on that trial!
In the meantime, I know I will be having ups and downs in the months to come...and reading all of your posts HELPS me so much!
Thank you,
arlene
And the nipple business seems to do with how close the Ca is to your areola. Mine is 5cm away and my BS already warned me that she doesn't think I will keep it. My theory is that evolution should make these damn breasts fall off after breast-feeding. Who needs 'em? They are trying to kill me...and I won't have that!
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shari.....I love that suggestion about the gratitude journal. I really want to do that! You are in my thoughts and prayers as you continue this battle.
arlene....hang in there. I know waiting for some action was the hardest part for me. I felt a sense of relief once a plan was established and I had dates in my calendar.
I am looking forward to my appointment next week with my MO to discuss the clinical trial that has been in the news.
Had a minor setback on Sat night when I spiked a fever and ended up in the ER. Thought I was cruising along relatively well since my first CT treatment and then 11 days later, BAM! Fever, chills, headache. Blood work showed low neutrophils so I got the neutropen shot and an antibiotic. Now I will need the neulasta shot after my second CT next week. Not looking forward to those side effects.
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feel better speechmom
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Thanks, speechmom I hope you feel better real soon. I crave relief from this anxiety. Yesterday I felt ok about the changes, but today I am pretty upset, again.
arlene
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Speechmom, I hope your feeling better. I tried taking Claritin for the neulasta SE but it didn't work for me-but does for a lot of women. Worth a try! Don't forget to drink lots of water and rest!
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speechmom. I took claritin and an aleve the day of chemo and for the next 4 days. Nuelasta shot the day after chemo. I had no bone pain. The first round of chemo I did not know to do that and I thought I would die from the bone pain.
Ask about the Aleve. They were not crazy that I was taking that. Said I could mask a fever if I had one. I told them I did not care. It made me feel better. Then I said" I am a hospice nurse I am hospicing myself". They left me alone after that.
Good luck!!!
Greenae= Hope you can relax. It is so hard to do. I made sure I worked out everyday to get rid of some of the stress.
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Wow! Just read all the posts from January thru today... so much is going on! I have been trying to get on with life and back to normal - whatever that means. Lost my right tissue expander to an infection in October - still haven't called the PS to discuss what we are going to do. If I had my way, I would never call a surgeon or doctor again for the rest of my life!!!
Anyways, I probably look silly walking around with one boob, but I am just so thankful to be walking around and getting back to life. I started running a little again and it is AWESOME!!!
Greenae and Slv58, UGH!!! I think that sums it up... ugh! I'll be praying for you both and sending loving, warm thoughts. When things get overwhelming, just remember to breathe...Greenae, as for going from 1 cm to 6 cm... I have a loooong story. I found a lump that was pretty big. We did a excisional biopsy to remove it... it was benign. 3 months later, at a follow up, I told my surgeon I had another lump. She said it wasn't possible, and then she felt it. Yep.. it was possible. In 3 months!!! Went from nothing to 7cm!!! TN is a bitch... Sneaky and agressive. But, I am tougher and meaner!!! So are you - you will get thru it. Just breathe...
Ladies, I think of you all often and I really wish this was an exclusive club that wasn't taking any more members... Hugs and prayers for all!!
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Speechmom, - i hope you are feeling better! hate those set backs!
i had a few, too, and it stinks, but we get through them! I had neulasta with chemo and the claritan did the trick. I took the day of, and about 10 days after.Shari and Arlene, - I hope that this is a GOOD day, and that you will soon be less stressed!!
Hugs to all from freezing, snowy NY!
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Thank you, all
Got an appt with PS for tomorrow. Hope he thinks he can put me back together at some point. I fluctuate between wanting things to start happening and wanting to just run away. ugh. Thank you for your thoughts and prayers. Gonna go ride my exercise bike and get some endorphins going!
arlene
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greenae, this is really the toughest time. Once you get your answers, get your treatment plan in place and actually start treatment, your anxiety will decrease. It won't go away completely, but it will get better.
Speaking of anxiety, here is an excellent article for all of us with TNBC and anxiety.
Study Showes Extra Emotional Effects of Being Diagnosed with TNBC
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Thank you, simplelife...I am banking on that.
Can't take much more waiting, and the LX to MX really threw me. I am trying to be strong, but keep falling apart. 0 -
hello all I just returned from my BS. He went over my pathology report and said that it shows I am triple negative. My original biopsy showed ER+ but less then 2%. Now I'm looking for information before heading to see my MO on Monday. I have an appointment tomorrow with my PS my goal is to get her to fill my TE's. I just want some good news. On a side note my daughter (16) is having a fibroid adenoma taken out off her right breast sat tomorrow and I want to focus on her.
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Msmath, welcome to the forum, and I know you will find tons of info here and on other threads on BCO. I know you are concerned for your daughter, so sorry you are going through this. Hopefully you are healing well after your surgery. Are you having chemo or any other treatments?
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Great article, Simple. Thanks for sharing.
Welcome to all the new gals.
Wishing everyone a peaceful day. I don't post much anymore but try to stop in and read frequently.
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Thank you for the article, simplelife. Sure can relate. Msmath, I hope you're healing well and your daughter and you deserve some good news and hugs. Everyone on here is so helpful. Off to my first PS appt. I am nervous. But ready to lace my boots!
arlene
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I don't post much anymore, but do still stop in from time to time, and try to catch up on the news. I'm thinking of greenae, shari and everyone else staring down crappy news, and wishing you the best. Stay strong... you'll make it!
Shari: As shocking as a recurrence is, I'm impressed by how fast and efficiently your test results seemed to have come together, with a diagnosis and the makings of a treatment plan. Where are you being seen, if you don't mind my asking...? (I've had some issues with perceived breast changes, but so far they have checked out okay with mammo, onc, ultrasound. Your advice to pay attention is very wise.)
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I am meeting with my MO on Monday should get a chemo plan in place at that visit. I knew before my surgery that chemo would take place but BS said meds may change up some with the TN diagnosis
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ms ath, we are all here to help! For those in rads, who have done radiation, is 6WEEKS normal? Everyday? Just had appointment and was floored. Starting end of March when chemo done. Also ordered a CT scan to make sure it had not traveled inward/ upward
Kath
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Yup, 6 weeks rads
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thanks Jen....FYI I LOVE Charlotte!
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Hi everyone, been very busy. Arlene I hope your appointment went well, thinking of you
Luah, I'm being seen at Sunnybrook. They were able to get me in sat for breast MRI and yesterday for left breast mammo. Now I have to wait until march 9 and hope it doesn't grow/spread. That's when I go for an education class and formal apt. with BS and PS.
Tobycc, I had 7 weeks of rads, it is normal but very doable.
Mismath, hope your doing well.
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Tobycc= 7 weeks for me of radiation. So much easier than chemo. A cake walk for me. Finished yesterday.
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Tobycc radiation was a walk in the park for me. We have a wonderful facility here in Hamilton, NZ that is like a motel. Really lovely, called the Daffodil Lodge, two hours from home. I went every Monday for just over five weeks and then I came home every Friday after treatment and have the weekend at home and back again on Monday. I used to drive myself there and back except for My first two days and it was wonderful. We had a large room each with a good sized ensuite and all of our meals was cooked for us including breakfast and lunch. We were offered cakes biscuits, sandwiches and any drinks all day long and Treatment was half hour per day at the most including getting changed and then the rest of he time was yours to mingle with the other people who were all there for different treatment of cancer, not just breasts. The Lodge could take up to 50 people at a time and we made good friends and did nothing but laugh. I never burnt from treatment nor did I feel any tiredness. If you had to have rads that was the place to go. Daffodils are the cancer flower in New Zealand and the Lodge had them everywhere in the garden.
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Cocker, wow,wow,wow. That sounds amazing. Kind of like a spa except for the radiation part. Do you pay a lot for that? And can spouse or SO come too. New Zealanders know how to do it right!
Good luck Shari, Arlene, Toby, msmath.
I'm 16 mo post diagnosis, 10 months pfc, 7 months post radiation! I feel good but there is still that naggy little bird on my shoulder making me always look back to make sure there is nothing coming. Playing phone tag with my MO to ask again about the lumpy lumpectomy scar especially since your news shari? How do we know it's just scar tissue? How would it show up on mammo or US. Should it be biospied to make sure?
Here Is joan lundens recent blog post on feeling after finishing tx and the support online she recieved
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hi all! Thank u for the good thoughts! I met with PS today and have a plan Finally! Left mx 2/26, TE placed, after chemo and possible rads will decide if implant or DIEP and do right breastreduction. I AM GOOD WITH THIS! Feel so relieved there is a plan. Feel ok to knpw in one week this crap will be outa me! I hate my left breast, will not miss it. Just want to get things moving. I feel I have been thru 6+ weeks of hell, and am ready to Do something about it. I am angry! And I will function better with that than anxiety and fear. This cancer will Not get the best of me! I already have a different appreciation of life, and hope I can stay strong. I so appreciate all of your kind thoughts and advice. My thoughts and prayers are with all of you. Let's lace up and beat the crap outa this!
Love, arlene
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