Calling all TNs

NavyMom

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.

greenae

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

Luah

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.)

Msmath

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

Tobycc

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

jenjenl

Yup, 6 weeks rads

Tobycc

thanks Jen....FYI I LOVE Charlotte!

slv58

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.

eileenpg

Tobycc= 7 weeks for me of radiation. So much easier than chemo. A cake walk for me. Finished yesterday.

Cocker_Spaniel

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.       

Lisaj514

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

http://www.joanlunden.com/category/35-breast-cance...

greenae

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

Cocker_Spaniel

Lisa we don't have to pay anything, not a cent.  The Lodge is completely free and run by the hospital. It was the ideal place to be for the reason we had to go for.  We learn't there were a lot of people there with the same complaint and could compare treatment and diagnosis but sadly there was also many people with worse than what we were going through yet they still managed to laugh.  It was really like a wonderful holiday because apart from the half hour of our treatment every day, which we were picked up and dropped off at the hospital and then they waited to take us back to the Lodge we could do anything we liked.  Some had naps, others went shopping in town, we even went to the movies and to the casino and had a ball although I didn't win anything.  All we had to do was to wait for our meal times.  It's overlooking a beautiful lake and the town was just full of great shops, I had a ball in them.   The good thing about it is we still all keep in touch and will meet up.  Some people came from a long way away, about five hours by car, so they used to fly those people down still at no cost.  I was so lucky to be there.        

Oh yes forgot to mention that if you need assistance your spouse or support person can come too and they also had family units.    

slv58

Lisa remember everyone is different, but with me the 'thickening' was internal- just above my scar- it was not sitting within the top of the scar. My actual LX scar is smooth. With careful feeling I thought it felt more prominent than the surrounding scar (hard) tissue it seemed to be embedded in. It showed on ultrasound as a darker somewhat circular area amongst the rest of the scar tissue (from rads and surgery). The Dr. who did my biopsy said that it was slightly darker and more dense than the rest. I hope this helps.

Arlene so glad you have a plan and I can see your in full fighter mode-you go girl!

Hope everyone is doing well

Shari

anotherNYCGirl

CockerSpan, - that radiation set up sounds AMAZING!! I am sure that most of us who went for rads managed to squeeze it into our work day, and family assumed all was fine, and we were super women who could do EVERYthing. If I ever need rads again, maybe I will move to New Zealand!

Greenae, - I am so glad that you have a plan in place that you are comfortable with! Will you be treated in Manhattan or SI?

Slv, and all others here, - stay strong! (and WARM! It's freeeezing here!!)

greenae

hi anothernycgirl I am being treated in the city and just found out I get to keep my nipple. Woohoo (I think?)! Surgery one week from today, I am told its a 23 hour stay. Not sure if that is good or bad? Trying to get my pre-op tests done. Jeeze, Used to be able to get it done at the hospital. My priority, of course, is to get a good haircut. Trying to stay strong.

Thanks for the help, everyone!

Arlene

Meadow

Toby I had 7 weeks of rads 5 days a week, because my Radiologist said, "Cancer doesnt grow on weekends" Wink!

anotherNYCGirl

Greenae, - good that your date is set and you are underway with pre-op tests. I wasnt given the option re nipple, - i would imagine that is a good sign if dr feels you can keep it!

Will you be able to have chemo close to home rather than the city?

Stay warm and have a relaxing weekend!

Tobycc

thanks Meadow for the smile!!!!

greenae

Hey anothernycgirl...I think I would prefer to go to the city. I love SI, but I trust NYU. And it's freezing! I just got home from hearing my son's band play. BRRrrrrrrrrr! And Yes, I am so much calmer knowing the plan is underway. Thanks so much!

arlene

ALHusband

My wife was diagnosed in April of 2013. Because she had had Adriamycin 17 years prior, for lymphoma, Adriamycin was not an option due to lifetime limit. Doctors at Vanderbilt in Nashville explained that giving more Adriamycin could actually cause a serious leukemia that could kill her in less than 2 years...also a risk of damage to her heart. That said, treatment was Cisplatin and Taxol, bilateral mastectomy and prophylactic oophorectomy (because she's BRCA2 positive). Coming up on 2 years from diagnosis and, so far...so good (praise God!).

Allydp

I could really use some prayers and positive thoughts. About a month ago (it was actually the day I got home from the hospital stay from my port removal infection), I got up out of the recliner and felt a crackling, pulling sensation in my thigh and realized the top of my thigh was numb. I thought I pinched a nerve and let it go, but mentioned it to my PCP last week during a routine appointment. She immediately referred me to ortho who ordered a MRI of my femur, hip, thoracic and lumbar spine. I chose to do all the scans at once, so I'll be in the tube for 2.5 hours this Monday. I've had ongoing back rib and spine pain since the middle of chemo last year, so on one hand I'm glad to finally evaluate things, but I'm also terrified. Life is just starting to fall back into place and good things have been happening for me and my husband. I pray this isn't the bubble bursting. I have a quote on my fridge that says, "When you live in fear, you end up living the life you were afraid of." I'm trying so hard not to live a fearful life, but times like these are so hard.

MomMom

Dear Ally,  Please try so hard to fight the negative thoughts.  You are in my thoughts and prayers for a swift answer for your thigh pain that will offer you sweet relief from your fears.  Chances are excellent that it is what you fear.  You should feel good that you have been so extremely proactive in getting the scans done.   (((((Hugs))))

Paula

MomMom

Let me try again...

Dear Ally,  Please try hard to fight the fear.  Chances are excellent that it is NOT what you fear!!!  You did the right thing by getting all the scans out of the way.  You are in my thoughts and prayers for the best possible outcome and relief from your fears.  (((((Hugs))))

Paula

Tobycc

I support Mom Moms input.....but have added yiu to my prayer list!!!

anotherNYCGirl

Ally, - the drs are super cautious and look into everything, - which is good.

Dont let your imagination run away, - think GOOD thoughts.

(I once read that 'worrying is like paying interest on a loan that you dont have yet!' )

Sending hugs

slv58

Allydp, I'm happy you are getting things checked out because you will then be able to relax and not let those little dark fears get in the way. I have an inspiration board and one of the things I have is - hope sees the invisible, feels the intangible and achieves the impossible.

I know that it is sometimes it is really hard to live life fearless but it's also important for us TNers to be very aware of our body and you are being proactive. My MO ran a complete metastatic work up when I complained of hip pain and it turned out to be a cyst. Stay positive and know there are many benign possibilities for your concern. I'll be thinking positive thoughts and hope your MRI goes quickly. Please know we are here for you!

Shari

Luvmydobies

Arlene, glad you have a plan and you're feeling calmer.

Shari, still praying for you!

Ally, we'll be in your pocket, praying Monday. I'm ready to ask my PCP to order a possible CT scan for some off and on lower left abdominal pain. I didn't think to mention it at my Onco checkup because it wasn't hurting then. I've had some painful urination for awhile and several urine tests and a culture have come back negative for UTI, so she said she thinks it's non infectious urethritis, but last night I started having a stitch like pain in my mid and lower left abdomen. It got a little worse in the middle of the night but wasn't as intense when I got up. It's been happening off and on but hasn't got too bad until last night. Also before it wouldn't last long. Thought of going to the ER but don't really want to be exposed to God knows what in the hospital! I am just tired of wondering if it's gyno related, urology related or gastro related! I worry about everything you can think of from kidney stones to Cancer or infection, appendix, bowel obstruction or perforation, you name it! I have had two recent metabolic blood panels come back normal and a normal CBC, normal Pap test,but something's going on! I'm ready to ask for some sort of scan but at the same time terrified to get a bad result. Ugh

slv58

Luvmydobies, you know your body better than anyone. If something doesn't feel right, you owe it to yourself to get answers and peace! I know with myself, I tend to let things go to a point- then I investigate. I guess it's similar to the 2 week rule. Sometimes I think I over react to body pain issues but I guess not given recent events. Now I truly believe we should trust the signals our body gives us and expect to be given answers. No one else will advocate for us so don't feel bad asking for further tests if the 'usual' panels are not showing anything. Call your MO tomorrow! We will be there with you and Allydp and Greenae and everyone else!

Luvmydobies

Thanks Shari! I've had stitch type pains before cancer and thought it was gas or something like PMS, so it's not totally out of the norm for me. I had a perfectlynormal colonoscopy last year, so I don't really think it's my colon. Also my menstural cycle has pretty much stopped due to chemo and my doc had thought this was like a functional ovarian cyst when I first mentioned it, but I haven't had a period since December and before that I had some bleeding in September then that stopped and I had one regular "period" in December. I did have this kind of pain before those bleeding episodes. The Onc said it was "normal" for my cycle to be sporadic and it may stop completely,or come and go before normalizing. He told me BC doesn't spread to the bladder and since I'm TN and BRCA negative that it would be extremely rare to spread to the female organs. I love him but he's very anti scans! My PCP would be more apt to order one so I'm calling her Monday. As far as the burning is concerned I notice it more when I eat things that are tomato based or spicy so irritation does make sense because my mouth will kind of burn too. She also mentioned Interstial cystitis which causes UTI symptoms but there is no infection. She may refer me to a Urologist but I hope not. There's just so many things it could be and I'd rather just get a scan to hopefully rule out the bad stuff.