Calling all TNs
Comments
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Why postponed?
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Ohm the surgery complication? Now I remember?
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Thanks for all the responses...............and Karen I am so happy that it is working for you........we all like to hear that kind of news.
Update from yesterday. all looked good, she was pleased with how I looked and they all loved my hair (what I have). Repeating the Pet Scan in December. We did blood work but not sure if she had it while I was there because the lab was running behind. I have to make my mind up how I feel about the blood work issues as she does not routinely do them and she does not do tumor markers ( my last one not do them either) I like this lady and she is at one of the biggest cancer centers here (besides cancer treatment centers, which is new here)
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Placid44...first 2 delays were from the second surgery from the mastectomy not healing/regaining bloodflow. Now I have some infection...a tooth problem 5 days after I took my last antibiotics (after 6 weeks of them) and extra fluid that keeps building around my tight tissues expander and weird pains there/low grade fevers. We're considering just removing the right expander so I can get in chemo.
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The decision for radiation as treatment for someone with a BMX is recommended based on a variety of information that the doctor has about the patient, with a number of factors involved.
This is what is quoted from the American Cancer Society:
"Radiation therapy is treatment with high-energy rays or particles that destroy cancer cells. Radiation to the breast is often given after breast-conserving surgery to help lower the chance that the cancer will come back in the breast or nearby lymph nodes. Radiation may also be recommended after mastectomy in patients either with a cancer larger than 5 cm, or when cancer is found in the lymph nodes."
Referenced from this link: http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-treating-radiation
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StupidBoob - So wonderful to hear your update! That is awesome news. When are you going to show us your fabulous new hairdo?!
Regarding the labs, if you are still pondering how you feel about it, then it sounds like it is still a concern to you. And if it's a concern to you, you might consider a 2nd opinion with another Oncologist to see what their surveillance protocol would be on you. Then you'd be able to have more than one viewpoint to go by. I know we all posted how we are being followed, but we all have different risks assoicated with our diagnosis, and therefore our own tailored protocols. But with you, the common link between both of those Oncologists' opinions, would be you. I think it's something to consider - talking to a second Oncologist. Even Oncologists within the same group or office can have varying degrees of opinions. So if there's even a second Oncologist at your current facility you can try with that or you can try with a different facility.
I have seen a second Oncologist before for a second opinion on whether I could go on Tamoxifen. If you are hesitant because you don't want to upset the relationship between you and your current Onc, you can always request a complete set of your file from the Onc - the Admins work on these all day long, and it would not be an uncommon request. Once recived you can give that to the second opinion Onc about a week before your appointment so that they have an opportunity to review your case. But do know, that Oncs know and even come to expect that people get second opinions and it's usually handled very well by the Onc and doesn't make the relationship awkward.
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StupidBoob:
I just logged on because I had another idea for you.
Why don't you download the NCCN Guidelines Manual for Physicians. It is unique in that you can directly follow the schematic based on your indiviual pathology, such as tumor size, margin status, node status, er/pr status, etc. In addition to that, there are reference pages in there for what the standard or suggested protocol is for following the patient and provides very clear details and it's specific to the selection you've chosen - you'll arrive at the page as you click on the appropriate links relating to the information about your pathology. You can reference your diagnosis, and see what the various recommended treatment options are, etc. It's very informative. I've attached the link. I believe you'll want the red pdf one, under breast cancer titled NCCN Guidelines. When you download it, it should be filled with technical information. The one titled for patients is not the same thing. You want the Physician's one which should be referenced on the front page of the manual.
http://www.nccn.org/professionals/physician_gls/f_guidelines.asp
You'll have to create a user id/password and provide some info, but when I did it, I used generic information so I could maintain my confidentiality.
Hope this helps!
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NavyMom--Thinking of you and sewing halloween costumes. Are you making something for your GS this year? My 2 GSs want to be Batman. I have the pattern and fabric, but lack the energy just now. The 3 girls have interesting ideas: a black cat; a pink dog; and a character from some kids' movie, a minion. So I've bought various pieces of the outfits for the girls and I think I'll only need to make ears on a headband.
I hope you are well. Jan
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So nice to hear from you, Jan. My little guy is 3 1/2 now. And he is changing his mind hourly for his costume. One minute he wants to be an m & m (the red one) and then he wants to be a power ranger. So no costume order yet. I haven't been in the mood for sewing so hopefully he'll settle on something easy! Can't imagine making five costumes...you go girl!
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Ok I need to vent! There is this so called friend of mine who lives in Korea and was an exchange student here around the same time I was in college, she is 1 yr older than me and is a 2 time breast cancer survivor. Anyways, she decided it would be a good idea to visit me while I was having rt breast radiation treatment in Sept 2012 to supposedly help me with cooking/housework. She wanted to bring her then 4 yr old son, her motive to send him to pre-school in the states. I knew she didn't know how to cook, but she insisted she even has a cookbook and everything!
Well, as soon as she came with her son, they were on Korea schedule and were up when we were trying to sleep, cooking, talking, eating, ... My girls needed to go to school and mind u I was doing radiation treatment at the time and was very tired! She cooked 1 meal the 3-4 mos she stayed with us. Never did any cleaning, I had to teach her how to clean the damn bathroom mirror, which had so much splatter on it, I'm sure she couldn't even see herself! I also had to teach her how to clean the damn toilet, especially since her son kept leaking on the rug, told her to clean the floor and wash the rug! OMG, she's been married for how long and her son is how old, she doesn't know how to do these basic things. I even had to ask her to at least vacuum my younger daughter's room, where they took over.
I ended up cooking for 2 more people and cleaning for 2 more people, while taking care of my 2 kids and my husband, go figure y I now have stage 4 breast cancer. She had the nerve to tell me after 3 months of intruding in my life that her son has been complaining that my husband and I have not been as nice to him as the beginning. Is she fucking kidding me!
She was planning to go back around Christmas and wanted to return with an additional kid, not her own, but one of the students she was tutoring in English. I warned her having 2 kids is way harder than having 1, especially not her own kid. She didn't heed my warming and I only ok'ed it cause she offered to pay for living expenses. Since I wasn't working I was thankful at first. They ended up using 3x more electricity and water that the amount they paid us wasn't enough, our market bill came out to at least twice too.
This is getting too long. Fast forward, she now lives with her son, the exchange student, and another female adult she asked to come and help her cause without me she can't do anything. She texts me today and has the nerve to ask me where to get Halloween costumes, I flipped out. I gave her a piece of my mind. I told her she doesn't know what I'm going through since she had early stage breast cancers, went through chemo only once, surgery twice and radiation twice. I have stage 4, everything hurts from head to toe, what does she know about how I feel! I'm worried about who will take my girls costume shopping and here she is asking a sick person where to get costumes. She has access to internet, she has a smart phone, she has other friends she can ask, and I'm sure she has ads like all of us do from Party City, ... Y are people so selfish and senseless, I know I'm always giving, but isn't it time I receive and not give for once? So frustrated and hurt!0 -
Julie-So glad you got this off your chest. Sounds like you have been zapped of all patience with this woman. It certainly was nice of you to teach her basic living skills...but good heavens was she born in a barn? Or did her mum always take care of her??
this is about you and your battle....people who are willing to help you should join you.....I hope you have a good day......hugs to you .....
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HI I was diagnosed at age 49, and I was diagnosed via mammogram which I began at age 40 because of dense breasts and a family history (aunt) and my lesion was caught on mammogram. I had subsequent biopsy and I have invasive adenocarcinoma of the duct and opted for a double mastectomy with SN biopsy, all negative. I am triple hormone negative and after the mastectomy I have now been started on "CMF" chemotherapy every three weeks for a total of 8 sessions. I will also be followed by my surgeon every three months for one year and then every six months for four years after that. I just began the chemotherapy (1st session Sept 24th last week). I have a living mother and a 27 year old daughter and I am scheduled to go to genetic counseling for the BRACA test. I do not want to know the results but my daughter wants the information so she can make an informed decision of her own, whether to be tested. Thanks for letting me post and hope you all the best.
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Welcome lenepete....this is a good place to chat, lots of good women with good advice. No judgements made here either....I hope all goes well for you with your journey. Hugs to you....
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Lori, yes her mum and husband did everything for her, since she had her 1st breast cancer at wedding time and 2nd after having her son, she didn't have to lift a finger, must be nice!
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naan, that sounds like my wife's friend from out of state who's "helping" us right now. She's an absolute slob, eats around the clock, and makes more of a mess than my wife and I combined...and leaves it for us to clean up. She eats sugar like a humming bird! I have NEVER seen anybody drink more coffee than her...and each GIGANTIC cup of coffee must have at least a quarter of a cup of sugar in it. She's blinder than a bat so more sugar and coffee winds up on the counter than in the cup! She fills every one of those 24 hour a day cups of coffee right to the very brim of the cup...then proceeds to walk from one end of the house to the other...spilling it in a trail on the floor. Then we'll talk about her "cooking"! She "cooks" for us, which consists of concocting something that she spills all over the stovetop and lets it burn on there! She harasses my wife to "show her around" the city! MY WIFE HAS JUST COMPLETED CHEMO AND IS RECOVERING FROM A DOUBLE MASTECTOMY!!!!! Sorry if she doesn't feel like being anybody's "tour guide". Ahhhhhhh! With friends like this...who needs enemies? Please stop "helping" us and go the hell home!
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Naan, and PS...she decided to "help" with the laundry. All of our whites are now a lovely shade of pink. And I've had to replace three knobs on the washing machine because she "stripped" them by not pulling them out before turning. NOT KIDDING!!!!
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Alhusband, wow another one, man do they not get that we need help, not them!
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Oh man, sounds like some energy zappers right there, some people I'm sure just want to be able to say they "helped" during a tough and challenging time, where'as it's them that's making it torture.
If i've learnt anything it's to speak your mind, this is YOUR time for love and nurturing and healing, a true friend would listen, maybe be a bit hurt but competely come round to understanding, honestly you get more help frm strangers sometimes!!!! And some thick friends need a list, write down what you need if they feel compelled to help in some way, you don't need a financial and emotionel burdon at this time in your lives!!!!
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omg...both nightmares! When my sister---who is much like these described "Helpers" --asked to come for a visit toward the end of chemo my hubby stepped in and said NO! At first I felt really bad about not letting them come for vaca like they do every year but then I am so glad he did it. I realized that it was ok to say "no" to those who just do not understand how difficult all of this can be. The most important thing right now is to get through the treatments so the focus should be on YOU. It is so difficult sometimes to speak up as we just do not want to hurt the ones we love but sometimes ya just gotta do it
Hugs to all of you!
Maggie
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omg...Al, bless your heart for not blasting her. I can feel my blood pressure rising just reading your post. Sounds likes her intentions were to have herself a little vacation...certainly not to help out. Some people are incredibly self absorbed and clueless.
The only bad experience I had was when three of my six sisters came to visit, after my surgery. Except two of them don't like each other, one of them is mentally ill. The ill one kept staring at the other one like a pit bull, waiting for one wrong word to come out of her mouth. Long story short it was very tense, and I told the other two I didn't not want the third one back to help when I start chemo....sounds mean, but there was no way in hell I wanted her around me. She is very very A.D.D and is an angry woman. Being sick and having a serious dx, leaves little room for toxic people.....we had all high hopes that this sister would of been on her best behavior when she came to visit....Hang in there Al and Julie.....
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There must be something in the air about visits, although this is not related to help. Over the weekend the in-laws called to say they are planning to come see us between the 1st and the 15th and what was good for us? My husband and I both said that timeframe doesn't work for us. He told them that they have been shorthanded at his work and was now training a new exec in October, while I explained I have our personal and business taxes to get in by the 15th, an Onc appointment, a PS appointment, a meeting with a colleague, and 2 large client projects. And what really started things off on the wrong note, was when they started the conversation with us, they told us they sent us an e-mail two days earlier and when we hadn't replied that they thought maybe something had happened to me! OMG I'm just full of tears and so upset still. Why would you think something happend to me? So we stayed firm that we couldn't see them and we explained if they wait until Nov we can spend much more quality time with them (they are driving from 6 hours away). So after we hung up with them - which you could sense the tension, I fired off an e-mail to them. I said NEXT time we don't reply within 48 hours of an e-mail, instead of thinking something is wrong, why not instead assume that something really great must be happening to keep us so busy. By the way, on the previous conversation with them we told them that we don't check personal e-mail often, as it's mostly spam, and if somebody has something to tell us, they usually call us. As it turns out their e-mail message was titled "urgent". When something is urgent to me, I pick up the phone and call. So frustrating!! I'm trying to keep my stress level down before my labs, which I always work really hard at that about a week prior, I start getting mentally and physically prepared. LOL And now, I'm so stressed out about this situation that I'm beside myself.
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Debra thank you so much..............I will check the link out. I am not sure if my insurance will pay for me to go to yet another oncologist but I guess I can always check.
What I went through just to get the avatar on here that I have, I will probably not be sharing the new do.....:) I wanted to share a few things and I can not ever get it to work right
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Hi ladies - a few weeks ago i noticed my leg hair and armpit hair stopped growing. I finished chemo early april and since then things were back to normal but a few weeks ago I noticed I hadn't shaved in a while so i tracked it. It's been 3 weeks.
Thoughts??
Dr didn't seem concerned at all.
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so funny you say this, I noticed just recently my eyebrows havent needed to be waxed....I was done in July with chemo, lost most of my eyebrows in late July, grew back really fast in August, needed to wax twice and now its been weeks and nothing?????????? hmmmmm I'm still in radiation and see the doctor on thursday, think i'll ask him.
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Hi. I am new to this website and this is my first post. I was diagnosed with Stage IIIa ILC of the right breast in 2000. Tumor was ER+/PR+/HER2+. Had a modified radical mastectomy with axillary dissection (6/16) followed by 4 rounds each of A/C and Taxol and six weeks of radiation. Five years of Tamoxifen. For twelve years I had NED but in July, during consulation for lymphedema, I called the doctor's attention to a swelling under my right collarbone. An ultrasound led to an MRI which led to a PET/CAT scan and several biopsies. Two weeks ago it was confirmed that I have a recurrence in the pectoral muscle just below my right clavicle. No sign of mets anywhere else (thank heaven). I started Gemzar/carbo last week. There are a couple of odd things about the current diagnosis. The previous tumor was hormone receptive and HER2 positive while the current one is TN, and the new tumor is in the area that was irradiated previously and my RO says that more radiation would be risky but not impossible. Part of the risk is due to the location. He says it is very near to a nerve that controls the arm, and damage to that nerve could result in a "dead arm."
If anybody has experienced similar issues (mainly a "triple positive" cancer turning into "triple negative", but also a recurrence in muscle tissue near the original site, radiation in an area previously irradiated, radiation resulting in nerve damage) I would love to hear from you.
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Dorian, it's nice to meet you! I think you should also do a new post where it starts it's own thread, because that might also have more visibility. I'm glad to hear that you caught things and that it hadn't spread. I'm glad to know that for 13 years you did so well, and with TNBC, it responds very well to chemo. I think you'll have more continued success!
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StupidBoob - so far everyone I've talked to one these boards have been able to meet with 2nd or 3rd or even 4th Oncologists for multiple opinions. I hope you find that yours is among the majority here!
Oh I know what you mean about the avatar, I have had problems trying to upload or attach things.0 -
Inspired by Dolce - Thanks for the upbeat words about TNBC being very responsive to chemo. My MO told me that, but it's good to be reminded.
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JenJen:
My cancer side armpit grows no hair whatsoever and I finished chemo and rads 4 years ago. My left armpit I still have to shave but not nearly as often as I did prior to being diagnosed and treated. Go figure.
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So i have to tell you something funny. Over the weekend I felt a lump on my chest wall so today I went to the MO. When it was time to show him the lump I whipped open my gown and he said "NO you didn't?!?!?" Yes I did - I did take a sharpie and circle the lump. He was laughing so hard and so was I. It's kinda like a car under pressure it never makes that clunking sound.
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