Calling all TNs

Titan

Oh Luah..where else would I be.....

About the pink thing...I used to like pink..then when diagnosed..I didn't like pink...now I will wear it ..now and then..I bought some new running shoes..they are mostly black..with some pink..but they are totally awesome..I love pink and black together as some of you have said...I'm running in a 5k in June for a very young mom of two little kids that died of TNBC...I did it last year and pretty much cried the whole way...the t-shirts they gave out are black and pink and very cool...now I just need to get some black and pink running shorts and I'm stylin'...did I tell you that my onc is going to run this with me?  How cool is that?  I hope I kick his ***ss..ha ha... ..My poor onc..he is only like 44 but he has a new baby and a 2 year old...He doesn't have alot of hair but what he does have is gray...he said he just didn't have time to get married and have kids because of med school....He said that people ask him about this "grandkids" all the time..poor guy...

Survivor2Be

As a place to donate money from your shirt sales, look up "breast friends". I believe they have a chapter in the NW area and they do alot of education and support to women.

laurajane

Wren wood- not sure how my previous post got changed so bad I was trying to edit it so I could add a message to Titan but then the original got deleted. Glad you read it first. Please look into the Mataki D then. I'll check that company out if you would like with my sister. She's a mushroom guru andvhas taught me so much.

laurajane

Wren wood it's Mataki pro D fraction there is one that is similar but it's not as good. My sister recommends you look at the website by a man named Paul Stamets his website is

Fungiperfecti.com. There are so many company's that have jumped on this mushroom bandwagon I wanted you to have a reliable souce to look up information. I-Herb carries his products, not all of them but a lot of them. Good for you for staying in the know!

TryingToSaveMom

Here I am, back again looking for information / help on behalf of my mother. She had her first AC chemo last week. It seemed to go very smoothly and she was doing very well for a couple of days after, but early Saturday morning she developed severe abdominal pain and had to go to the hospital emergency.  After tests and examination she was diagnosed with pancreatitis and admitted. Today she developed bowel / GI bleeding and the Drs are treating that too. The real puzzler is that all her pre chemo tests, scans and checkups were good. She doesn't drink and has never had pancreas. GI or bowel issues and had her gallbladder and appendix out years ago, which eliminates gallstones as a possible cause. All the Drs. said she had no outstanding health issues and was in good health - except for having TN BC of course.  The oncologists who've examined her this weekend say that pancreatitis is almost never a side effect of chemo and the sudden bleeding isn't normal either.

Has anyone else here experienced any of these after chemo? Poor mom is so discouraged. Only a week ago she was feeling great and ready to get on with her treatment. Now she is dejected, stuck in the hospital coping with these awful things and says she doesn't want to do any more chemo as it's done such bad things to her.

Lovelyface

Laurajane - Your son - such a sweetie, love him.  I am so glad you had that time with him.  Honestly, I hope the world ends in December, as they say.  We will all go together, which will be awesome!  Phthalates - I had never heard of that, I am going to google and find out, my God, what is that?

Luah

Tryingto: So sorry to hear about your mom's condition. Chemo is very tough on the GI tract (which is why they give you meds for nausea), but I don't have any knowledge or experience with pancreatitis. You may want to start a new thread under the Chemo board where it would be seen more widely.

Hope your mom is feeling better soon, and the doc can take some precautions with the next chemo. Many women do experience unintended side effects, worrying symptoms and hospitalizations for acute conditions - it does seem to come with the territory of chemo's suppression of the immune system. As discouraging as it is, I think most of us here would agree it's important to move forward, even if greater surveillance is needed or the treatment plan has to be altered. 

TryingToSaveMom

Thanks Luah. We're hoping to speak with her doctors today to see where we go from here and how to help her to heal. I'll pass on your words of encouragement to her.

Jenn

Wrenwood47

Laurajane, Thanks so much for the info.  I will check it out. And Yes, please do share my info (mushroomscience.com) with your sister. The more I can learn the safer I will feel.I have read about so many positive results with 'shrooms....what if everyone one of us could prevent recurrence or better yet, even stop women and men from gertting this horrible, life changing disease?

OBXK

LJ - I am so glad you had an evening with your son. Mine is 17, and I'm honored when he decides to spend a little time with me!



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I'm having shortness of breath and very fatigued. Awaiting blood test. I sort of have a burning sensation in the center oft chest, but I can't tell if on the inside or outside on my scar. Crazy!



Wishing everyone a "good" day. Xxx

Titan

Wren..could you tell me more about the mushroom thing?  I'm always looking for ways to help us against reoccurence..I'm very open minded; however...I'm not one to go way out there with stuff...I know that veggies are great for us..and everyone with or without cancer...

My son is now 21..and though things are a little better..I hear ya with the teenage boys...you gotta love them..but they can be very weird...

OBX...good thing you are having it checked  could be a cold..could be SE's from treatment but glad you are on top of things.

annie3310

I'm a TN about to start my neoadjuvant chemo regime - 4 A/C every two weeks, 4 Taxol every two weeks. Then it's on to surgery. I'm nervous about the chemo of course - everyone has such a different experience with it. What will be mine? But I'm also thinking ahead to surgery. Here's my question. It seems like a lot of TN women have masectomy vs. lumpectomy. At this point, my surgeon is saying lumpectomy, particularly since the tumor will (hopefully) shrink during chemo. My head says masectomy, just to be on the safe side. I'm not sure if this makes sense from a medical standpoint, but it does from a psychological one. I'm 56, have not been BRAC tested, no history of bc in the family. How have others approached the lumpectomy vs. masectomy question when the option of lumpectomy was available to them?

I'm glad to be part of the forum. It's been comforting and informative. At this point I'm obsessed with all things breast cancer, so it's a great source for me. 

gillyone

Hello Annie - I had a lumpectomy on the advice of the surgeon. Mine was before chemo and I was pretty ignorant about everything cancer related. I was just pleased that I could have a lumpectomy. You will find lots of TNs do. However, it usually mean you need to have radiation too. The stats show that a lumpectomy plus rads is the same as a mastectomy in terms of survival rates, so it mostly comes down to a personal choice. Many of us also had the same chemo combo - AC/T.

I'm sure others will be along soon.

Wrenwood47

Titan, I went to a seminar that was sponsored by our local hospital. The speaker's topic was very interesting regarding chinese herbs for use during chemo and radiation AND cancer prevention. He spent most of his time discussing the health benefits of mushrooms. He recommended several diffrent types, all available online in encapsulated form. I have ordered from mushroomscience.com but laurajane gave me another link. fungiperfecti.com. Interesting reading written by Paul Stamets. I am taking the supplements as a precaution against recurrence. I did not have chemo only radiation. Drs seem to think I made the wrong choice and have me worried.

CharB22

Hi Annie - I also had a lumpectomy on the advice of surgeon. I didn't really know that mastectomy was an option. Everything from diagnosis to lumpectomy happened in 9 days - before I knew that I was TN. Now I'm weighing the option of prophylactic mastectomy - My BRCA was negative. Had it been positive, I would definitely have had the mastectomy. Now I'm not sure. If I don't, then I'll have 7 weeks of radiation. I'm having the same AC/T combo as you.

Wrenwood47

Hi Annie, I requested a bilateral mastectomy, my surgeon refused. He said a lumpectomy, chemo and then radiation would be just as good. His reasoning was because of the high rate of infections for women who have bilaterals. I went ahead with the lumpectomy within a week of discovery. I probably could have found another surgeon to do the bilateral but I just wanted the damn thing out of me. I also was very cancer ignorant but spent hours online researching TNBC. My reason for not doing chemo was I had seen what it had done to my sister in law with HER2 positve and didn't feel there was enough research done on TNBC to warrant chemo. I am not quite a year out and will have yearly breast MRIs for the next 5 years. Dr did say my recurrence would not come back in my breast but in other organs. Not too comforting a thought, so why the breast MRIs...sometimes I feel it is all about the $$$.  Wishing you all the best on your journey. This blog can be so very helpful....you won't feel so alone.

Hope60

Hi Annie -  I had a lumpectomy, followed by the same chemo regimen you will be having. At the time, I was freaked out by my BC diagnosis and didn't really consider all my surgical options.  My surgeon recommended lumpectomy, and I was very happy not to lose my breast.  It's a very personal and invidual decision you are making.  Some questions to consider: How would you feel about losing your breast? How do you feel about having radiation?  (a must-have with lumpectomy).  And perhaps most importantly, what is your comfort level....i.e, if you have a lumpectomy, can you live with anxiety about BC returning in that breast?  Or will you feel better knowing that the entire breast has been removed? The survival rate is the same with mastectomy vs. lumpectomy & rads, but the recurrence rate is higher for lumpectomy. For me, lumpectomy was a good choice, but we are all different.  I wish you luck with your decision making.

Titan

I also had a lumpectomy...diagnosed on a Wednesday, surgery on Friday.   I did know I was tn but I didn't know anything about TN..I was just glad to get that thing out of there quickly...maybe that is why my BS moved so quickly...due to the fact that I was tn..I don't know.

mccrimmon324

Hi Annie,

I had a lumpectomy too, Time between diagnosis and actual surgery, not quite two weeks, they didn't know I was TN and I wasn't given the option of masectomy.  I did Chemo, TAC x 6 and radiation.  Hair has grown back enough now to look like I meant it be this short. 

OBXK

Hello Annie, I had ER + IDC when I was 43. I had a lumpectomy, TAC and radiation. It returned as TN, seven years later, on the same breast. This time I opted to have both breast removed, and no reconstruction. Sometimes, I wish I had had both removed to begin with, but I wasn't as informed and perhaps not as mentally ready at 43. At 50, I had surprisingly little emotional problem, having my breasts removed. I know I do not miss being wound up, everytime I had a mammo. Seems there was always something we were watching. I know you will make the right decision for yourself. Once you do, don't second guess yourself. Sometimes it all seems to be a big cosmic crapshoot. And if it made a lot of difference - you wouldn't have been given an option. Take good care...

Fighter_34

Titan: I just loved the good night roll call! Celebrate! Celebrate! 3yrs is GOOD news.

TifJ: Go to NYC and have a BALL. So much to do and see.

LJ: your story continues to touch my heart.

Hello everyone we are all making it one day at a TIME!

Luah

Annie: I had two tumours close together and my BS recommended lumpectomy and rads. I did a whole lot of research and soul-searching and have not regretted going with a Lx. I didn't know it was TN until after the surgical pathology came back but even so, expert surgeons quoted here on this site and elsewhere all say that they do not regard TN as a variable in surgical decisions (while tumour/breast size, margins, ability to tolerate rads etc. may be). There is also the evidence, sadly, that TNs are more likely than ER/PR+ to have distant recurrence than local... so surgery doesn't reduce that risk anyway (chemo does). That said, I have pressed for (and gotten) annual MRIs in addition to mammograms for local surveillance, as TN can be sneaky and grow quickly.

As you can see, there are many of us who opted for Lx, but in the end, for some women, it may be a very personal (rather than a medical) decision. Good luck with it.   

mccrimmon324

Titan, I forgot to congratulate you on 3 years!!!  Fantastic!!!!

epgnyc

Hi, Annie.  When I was diagnosed in 2002 with TNBC, my doctor also recommended lumpectomy and that's what I went with in additional to adjuvant chemo and radiation.  Nine years later in 2011 I was diagnosed with a 2nd TNBC in the same breast as the first time, only this time the tumor was larger (4 cm).  I underwent more chemo and had a bi-lateral mastectomy.  I couldn't help but wonder if I'd had a mastectomy the first time if I would have been spared this past year of difficult treatment.  But of course you know what they say about hindsight being 20/20.  However I'm very happy I had a BMX this time as I don't want any problems with the other side (had several biopsies on that side over the years).  It's so hard to decide these things.  You have to go with the science but also with what will be the best choice for you emotionally.  Good luck to you.

CharB22

epgnyc - your situation is precisely the reason why I'm considering the prophylactic mastectomy, even though I'm not BRCA+. I have a co-worker whose sister died after the recurrance (she was TN). That's my biggest fear -- it coming back bigger, badder and all over the place!

ksmatthews

I had my chemo, lumpectomy, then rads.  When I was finished with rads my RO told me a new study had just been released and said that a lx is just as efficient as a mx.  So he told me to be very happy with my decision.  I am!

Went to MO today and she said I was doing very well.  She is sending me to pt for my muscle weekness in my legs.  Schedule my mammo for March.  Also is going to do some research to see if she thinks metforim would be good for me. 

CharB22

Thanks KSmatthews. My MO said the same thing (I think my RO did, too) - which is why is keep wavering back and forth. ugh. The docs throw out statistics and other stuff and I keep thinking, "yeah...but YOU'RE not the one who HAS BC!" I'm also a very anxious person -- I've been treated for GAD (generalized anxiety disorder) for 5 years....all started when I got a call that I needed a 2nd mammo...which, turned out to be nothing, but I've been freaked for 5 years that I would get BC (I KNEW I would), and blammo -- I did.

journey4life

Annie, I was a candidate for a lumpectomy until the results from the BRCA1 test came back positive. It narrowed my options, at least in my mind, to one - a BMX which I will have next week. Both MO and SO recommended BMX. I'm not thrilled about it but if it will save my life, I'll sacrifice the girls. I am 52.

By the way, my mother was diagnosed 2 years ago with no family history of BC. They assumed hers was as a result of hormone therapy she'd had years ago. At the time, she was 76. She had a Lx with chemo and rads. So far, she's doing well.

I guess I'm saying that there are choices out there and the final decision is yours.  I think most of us have been where you are. Good luck to you.

mitymuffin

CharB22,  I also had a lumpectomy, then AC+ T, and rads. As others have said, the statistics are just as good (or better) for a lumpectomy + rads, as for a masectomy. Additionally, the recovery time is much quicker with a lumpectomy and you can get back to exercising more quickly, which may have some protective value.  I would guess that one also goes into chemo feeling stronger after a lumpectomy than a masectomy because you haven't has such a major assault on your body. 

You are doing the right thing to give it thought, and check out all angles. I have read that the rate of local (in the breast) reoccurance is the same for TN's as other kinds of breast cancers.  Its relatively low. 

bak94

Well, I still have an infection where my port was taken out, but it is not a staph infection, it is some weird pseudonomas bacterial infection!? I looked it up and it comes from soil or pond water! Yuck! What did I get into? The power was out for 4 days and I wonder if that had something to do with it. So I am back on heavy duty antibiotics for the infection and flagyl to prevent getting the c-diff infection again. Will I ever get to do rads? My mo went crazy when he saw what I have been through since surgery and started making calls to all my other doctors and telling them they have got to get this taken care of so I can go on to rads, gotta love my mo! The receptionist at the infectious diseaSE doc office said I couldn't get in today and my mo threw a fit! He said he was getting me in to see a doctor today, whether it was him or someone else, they got me in! I just love my mo!