Calling all TNs

lizlori

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 .....

lenepete

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. 

lizlori

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....

naan1004

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!

ALHusband

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!

ALHusband

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!!!!

naan1004

Alhusband, wow another one, man do they not get that we need help, not them!

Angstapp

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!!!!

mags20487

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

lizlori

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.....

InspiredbyDolce

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.   

Stupidboob

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

jenjenl

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.

Worrywart9390

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.

Dorian

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.

InspiredbyDolce

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!

InspiredbyDolce

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.

Dorian

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. 

LRM216

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. 

jenjenl

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. 

Binney4

Dorian, I don't have any personal experience with any of the conditions you've mentioned, but I do know about the "dead arm" issue your radiologist mentioned. It is actually called Radiation Induced Brachial Plexopathy (RIBP). There is a thread about RIBP in the Lymphedema forum here (it's a very slow discussion thread because, thankfully, it's a very rare condition), and StepUp-SpeakOut.org has a page devoted to it--how to connect with others with RIBP, management strategies, and abstracts of available research.

It's a difficult condition to deal with, but staying ahead of it can give you the opportunity to manage it well from the beginning. If you find radiation is advised despite the risk, you might ask about starting a regimen of Trental and Vitamin E from the outset. Also, controlling for lymphedema will help to avoid problems developing from the weight of a dependent arm, so a good lymphedema therapist will be a huge benefit. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Gentle hugs,
Binney

Daffodils

Dear KittyKate,

I have just come across your two posts whilst sitting waiting to see my oncologist and I am struck by your courage. I understand your fears regarding your young son, for me it is the hardest part of it all, (i have a son of 8) but this sense of protection for your child will provide you with amazing strength if you need it. It is very sad you lost your mum to BC and I hope very much that you have confidence in the amazing treatment improvements that are changing the BC prognosis - it is great that you have come into a research programme as you will be very closely monitored and will receive, as another lady mentions, state-of-the-art treatment. I can suggest reading Patricia Prijatel's book Surviving TNBC which I understand has lots of positive and useful information (I am a British expat in Bangkok so have not yet located a copy or got around to ordering on Amazon!) - I think it is definitely a book for us TNBC ladies.

Actually, this is the first post I have written - I started my 'journey' in April this year and have thought many times to write but somehow to start writing seemed such a big step. However, your post reminded me of my start and all the feelings that come with this stage. I cut myself off in the beginning and found myself reading forums rather than seeing people. I felt that having to deal with peoples reactions was too much in the beginning and so found these posts really a most amazing support and i thank all the wonderful ladies, and men, who take the time to write. I did however, also take this time to read a lot and became very informed, which I really recommend as it helps to feel involved in your treatment, rather than a passive participant. I also found shaving my hair off to be a positive move - when my hair first started falling out I had major sense of humour failure but this improved immeasurably after I took control and had it shaved off. I wore a wig in the beginning but as I got used to being a 'cancer patient' I found I didn't need it and choose to wear scarves now as they are more comfortable - I just keep the wig for dress up occasions!

I have to go in a minute, but I wish you strength as you start your treatment - glad you have a port, I resisted initially but so glad I have it now. It may be too soon to mention this but looking for humour has helped me the most - we were living in Kuala Lumpur when I was diagnosed but having only recently left Bangkok I missed all the friends I had made there, so my darling husband moved us back!!

Having close friends around you and sharing as much laughter as possible is the best - they can see you bald in bed on bad days or giggling over silly things on good days, a hug for unexpected tears or just good old fashioned retail therapy! Thinking of you. I look forward to getting to know some of you inspirational ladies. Liz x

mags20487

had my yearly gyn appt yesterday.  Day before I noticed a small lump that was not there before on my recon (gap) left breast.  Gyn has sent me to my ONC and my PS is recommending a biopsy.  My stomach is in knots once again.  Need to remember how to breathe

Maggie

CatWhispurrer

Maggie - Hugs to you.  When is the biopsy?

mags20487

not sure yet...see ONC tomorrow --thx

Maggie

TifJ

Maggie- hope all goes well and it is nothing of concern.

Dorian

Binney, thanks for the link to the RIBP thread, and thanks especially for your 2004 posting on that thread about lymphedema and dealing with questions from the curious. I only started having to wear a sleeve and glove full time in January, but when I ordered them I got them in black. I like some of the Lymphediva products but I need a heavier weight sleeve and I'll be danged if I'm going to wear some orthopedic-looking get-up all the time. This way, people aren't sure if it's a medical garment or a fashion statement. Sometimes I tell them more than they want to know, and sometimes I let them think it's fashion. But most of the time I'm just annoyed with the doctors who didn't give me enough information to help me realize what was happening, and what to do about it, before it was too late.

scouser47

Hi ,

Just popped on to see how everyone is and POW Nan and Al such thoughtless people out there.!! How can they act like that with all you are going through.
Similar but not half as bad here two weeks ago, my three grown up kids and four granddaughters arrived and by the time they left and I had run around like a headless chicken cooking different meals for ten people I was exhausted.
I have vowed that will NEVER happen again, if they want to see me, one family at a time and we eat out !!
My hateful DIL says " last time we saw you, you looked so old and ill " For heavens sake I AM OLD and was ILL. Do they not put brain in gear before opening their big mouths ? The temptation to belt her was overwhelming.
Don't know how you lovely people didn't just throw their things out of the front door followed by the visitors.
If they werent such slobs would suggest you visit them and do the same in their homes. Karma can be wonderful.
Inspired, your experience too was awful, like you I only look at e.mails now and again so would expect the curtesy of a telephone call. I now look after ME and the rest can go swivel. X

InspiredbyDolce

Hi - just signed on to pull some data - have to fess up to today that I'm on Metformin. I'm nervous and considering premedicating with Percoset.  But then if that screws up the labs, my Metformin may get blamed!

Mags, I'm thinking of you right now! What does your lump feel like - it is similar to the one with your diagnosis? Maybe with the reconstruction and the continued swelling going down from the procedure has made this easier to feel now and it's scar tissue.  The body heals and adjusts for a period of time after reconstruction, and reduction in swelling continues for months to com.  Someone posted on here just a week or two ago that their lump went away right before the MRI.  Let's all stop for a moment and say a prayer for Mags that she too will have the same result. 

JenJen!  What was the result of him looking at your lump?  Your marker story is funny - I like your Doc's response.  LOL  I used some eyebrow powder to mark the area where I wanted the ultrasound to focus when I went in two weeks ago.  We didn't have a marker.

Scouser, that's terrible!  What can't people be kind to others?

I've just read the last few posts, will read more soon!

Love you ladies, have a good day everyone!

adagio

Hello to all - just got back from my 3 month appointment with MO - she felt the lymph nodes and breasts for any new lumps and the spine for pain since she said that is a favourite place for breast cancer to settle. No blood tests, scans or anything - she said that all is good - so I guess I should be happy! Oddly enough I don't feel any emotion at all about it. She did say that the anniversary date is from the day they remove the tumour from your body, so that makes me one year cancer free! What a year it has been -- unforgettable. Glad it is all behind me!