please help

TenderIsOurMight

 Roderadio,

 Your greatest handicapp seems to me to be your traveling surgeon, who himself is about to undergo surgery thus offering you a single close date for the least invasive procedure (lumpectomy). You don't mention anything about disease in your lymph nodes and his plan for testing them (sentinel lymph node biopsy or full axillary dissection).

Your situation is complicated because an apparent small (1 cm), yet aggressive triple negative cancer was found first, and now another lump (yet a third already biopsied and benign) returns with active cancer cells, all in the same breast. Having had chemotherap which finished in August, it appears your new tumor may not be responsive to the chemotherapy you underwent. 

If I were you, lacking a different breast cancer surgeon in your vacinity, I would move on from the surgeon you had. Your personal needs should not be compromised by your surgeon's clinical schedule overly so, nor his personal time out. This is about you and your breast cancer. Adding to this is a rather unique situation, which needs expert interpretations as to whether this second tumor is of a new type, or inadequate excsion of the first tumor, or local recurrence due to chemotherapy resistence (this would seem rare).

I would travel to a Comprehensive Cancer Center in a timely manner and hence give you a link below which shows their geographic locations. I would seek an expert breast surgeon and oncologists opinion and I would appeal to my insurance company to allow such given the constrainst of your current surgeon being out due to their own surgery (http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html).

I wish fortitude and fluidity for you in your thinking. How you approach this does matter, and only true experts, reviewing your personal pathology and imaging can truly interpret best how to help you.

My best to you and your family,

Tender 

Shirlann

I agree 100% with our Tender.  First of all, Triple Negative (which Tender and I both are) is an aggressive cancer, and probably this had something to do with your recurrence.  So I would seriously consider a mastectomy.  No telling what else is lurking in that breast.  You sure don't need another cancer in there.

And again, if you have the ability to find a breast clinic, where you won't be pushed off and on like a piece of luggage, do this, move on.  You can get your original slides from the facility that has them and your original mammograms and go elsewhere.

And also, remember, your life is much more important than your appearance.  So if this is the stumbling block, think safety before beauty.  But this should not be an issue with a new facility.  This is a giant pain in the neck, but I can't imagine trying to fit myself around an obviously too busy surgeon.  You need to come first, period.

Gentle hugs, Shirlann

livesstrong

I agree with Tender & Shirlann-  I cannot believe it took 6 months for you to have your lumpectomy.  I was biopsied in late August '06 and had mine on Sept.12th '06.

Find another doctor who cares about you and not his career.

AE

Ka-Loni

Hello Again, Well I had my bloodwork done today. It is normal! And, my Tumor Markers are fine. Thank You God! I do have some sad news though. My Breast Cancer Surgeon, that did my Mastectomy, had relocated to another state for a real good opportunity at another Cancer Hospital about 3 months ago. Today, I found out she was diagnosed with BreastCancer herself, and, is now going through Chemo. Of all people, I am thinking here. I never imagined this happening to her. A blessed Angel that cares and helps people like us with this horrible disease, gets struck herself. Please say a prayer for her. She saved my life, and, many, many others as well. Yes, of course, I gained 3 pounds. So, Weight Watchers here I come! I will try it and see. Maybe, I can get down to 120 again. Not! Well, my sweeties, I will catch up a little here. I will talk to you soon. Bye.

God Bless,

Love,Kaloni

my3girls

Roderadio...

Tender has given you good advice. I too agree with her and the others. You  need to find yourself a surgeon who cares about you, an office staff who cares and handles you in a timely manner!! I could not imagine going through all of my surgeries, chemo etc without supportive loving and helpful doctors and surgeons!

I think I would opt for the mastectomy. My margins were not clear after I had the lumpectomy (which followed 8 rounds of chemo). So I opted for the mastectomy...and trust me...these ladies know me..that was the last thing I wanted to do. In hinde site...I dont' regret my decision one bit. I had my mast in Oct. 07..and did not need radiation, so I had a tram flap (not muscle sparing) done on Feb. 4th 08. I know you are wanting the diep..and maybe you can find the doctor to do that without traveling. I don't regret my choice in reconstruction either. I have been extremely happy with my results. I was off of work for 4 plus weeks..and I won't kid you whether it's a diep or pedical tram...it's a long recovery...but SO WORTH IT! I feel great, whole again! In fact...I get my final step this Thursday...my tatoo!!

I wish you all the best..and keep coming here for support!

xoxo

Lisa

my3girls

Oh Kaloni...great news on your bloodwork!! So happy for you.

Very sad about your surgeon. As you know it can strike anyone of us. I will keep her in my thoughts and prayers.

xoxo

Lisa

roderadio

thank you, tender, shirlann, livesstrong, and my3girls...i guess i forgot to mention that a sentinel node biopsy was done at the time of my first surgery (lumpectomy in april '08)...it was clear...i suppose that's why i had such a false sense of security...gene test was negative back then, even the pet scan i had done last friday concerning this latest lump came back clear...so everything points to nothing having spread...but there is that nagging feeling that the triple negative nature of the tumor has made it resistant to the chemo...which definitely did it's job of killing off healthy cells...i was fine all throughout the chemo until the very last infusion...all the worrisome and terribly uncomfortable side effects began then (aug. '08) and have lasted til now...i've recently been enduring a few days of extreme night sweats that wake me to reveal drenched sleepwear and bed sheets...i'm thinking it's hot flashes while sleeping (i have stopped menstruating)...and now i'm suffering slightly from diarrhea...

i have a friend who just had a recurrence of colon cancer 4 years after battling it and so now is undergoing chemo with a pump and classified as stage 4...i shared with him my dilemma and, despite the severity of his situation, suggested that if he were in my shoes, he would opt for the less invasive procedure first and would reserve the mastectomy if there were yet a third cancerous recurrence...i kept asking myself, "does he feel that way because he's a guy and truly cannot relate or is he unrealistically trying to think positive thoughts about a third recurrence not happening?" 

am i being unrealistic to think that if i get the lumpectomy and radiation that positive thinking, switching to natural and organic products, and exercise will stave off a third recurrence? 

i also think about what would happen if that third recurrence DID happen in the same breast or even if a primary tumor showed up in the "clean" breast...if it did so after choosing a lumpectomy, THEN i could do the diep and use the tummy skin to reconstruct both breasts after knowing i did everything else i could possibly do beforehand to save them...right?  or is that just silly and risky thinking?

i hear you ladies when you say that i should give more thought to the mastectomy...and after thinking that i had made up my mind earlier this afternoon to go ahead with the lumpectomy...i am now thinking of calling another surgeon (a female this time) to get her opinion and possibly use her services...

my thinking that the delay of excision after discovery may have caused a cell to migrate away from the original tumor and grow fed my desire to try to cut this new one out asap so as to prevent migration and give radiation a chance to work it's magic...

i don't know...i'm back to square one...it's such a big fork in the road...go left or right...

could you please share your experiences with being triple negative?  did it convince you to go with mastectomies because of it's aggressive nature?  if so, did you decide upon diagnosis of first tumor or after recurrences?  did you do one or both breasts? 

thanks, in advance, for your patience with my thinking out loud...

sueps

Hiya RoderRadio xxx

 I am so sorry you have had to wait long periods for your surgeon. I would without doubt find someone with more urgency xxx

I found my lump and was diagnosed and had a mastectomy all in the space of six weeks or so.

They chose to give me that op because of my age, I did not find out I was triple neg until after surgery , which was when they recommended chemo .

I hope this helps.

I do agree with all the above, it is imperative that you need to make the right decision and seek a second opinion. If I was offered lumpectomy at the time ...or a choice ...the fear factor would have come into it to start with and I woulod have avoided mast...HOWEVER once my inner self had kicked in I would have shut my eyes and gone with mastectomy. 

Please keep coming here for support , I feel you and all the sisters here are absolutely a miracle to me, my life would have undoubtley crippled me if it hadmt been for the love and support here.

You are in my thoughts and prayers

Much Love xxx 

sueps

Hi sisters xxx

I am loving you all, I hope you are all having a good week and some OK moments xxx

I am swamped with bad dreams and fear that I wont be here and cant plan and if I dont plan then what kind of life...I feel like I am going to have a breakdown...not in a morbid way ...just my head has toppled...I think it is post trau,a from going into the operating theatre awake last week and seeing where they did it...in fact I just got a sickly flash back typing that...

Help I am consumed with it and it makes me cross ...xxx

One week today I will know what that silly lump was.... ho hum xxx

I am as usual bogged down with work, Its my day off tmw but I have to go to Liverpool for a managemet meeting WAAAAA ...SOOOO annoying !!!

I am disillusioned this week VERY VERY VERY XXX

I love you all, you are all diamonds to me xxx 

sueps

I am very disillusioned...feel like I am treading water... feel like I am stuck at the bottom of a mountain...HOW HOW HOW .... UGH IT IS SO FREAKING ANNOYING ...INCREDIBLY...

It is as if I am waking up from a nightmare and only just seeing a wider picture to the whole ANNOYING scenario...and yet it is also making me think it is happening to a third person...see I told you I AM CRACKIN UP !!!!

WHY!!! 

lvtwoqlt

Sue, don't worry so much. It is alot to go through - the second surgery in a year, but I am sure that this is nothing. I too see things going by me in the third person sometimes. Can you get into some type of therapy for all the feelings that you are going through now?

Sheila

sueps

Oh Sheila ... I absolutely love your picture ...you and your mum are so beautiful xxx

Do you know if I cannot fight this feeling ...I think I will seriously go doctors...I feel very irrational and messed up...I feel extremely traumatised...I think all the dreams are me working thru evrything...I dreamm all the time of chemo and being burnt and swathed in bandages...going thru dark tunnels and having oxygen, very fast horrendously long dreams....flashes of the people in my life and feeling left behind...DRIVES ME MAD...and when I wake up it stays with me all day...these have been ongoing for 2 weeks...what the???? 

sueps

I am going to die and my boys will be sad...of course I am going to ....theres no way round this 

portiasproudmom

Bite your tongue, Sue!  You are NOT going to die!  That lump was just an infection of some sort.  Cancer does not produce green gunk!  You have kicked bootface hiney, my dear Sue!  It will not darken your doorstep again.  Please don't talk this way.  Sheila made a good point--you should talk to someone.  I think it would help tremendously. 

Love you, sweetie!!

Hugs,

Karen

portiasproudmom

It does sound like post-traumatic stress, Sue.  Please make an appointment with a counselor.

lvtwoqlt

sue it sounds like you are suffering with post-traumatic stress and there is help for people with that. I have heard it in people coming back from war as well as people who have battled a disease. Some counseling cna help you with the overwhelming feelings that you are having now.

don't dwell on dying. You are such a strong person, I see you growing old and watching your son's get married and have children of their own.

Karen, I was creating my post when you said ptsd. great minds think alike.

Sheila

sueps

Thx Karen .... xxx I am gonna see my doc 

I think I am just having one of my protests (   feel like I cant win LOL xxx throwing my ball down to boot face  ....   geez I could have years in front of me....I am sorry ...please forgive me sisters ...I told you I am cracked xxx 

portiasproudmom

Roderadio--I agree with everyone who posted before me.  Switch surgeons!  How horrible to feel like you're not a priority.  Your life is precious, and you deserve quick and competent treatment!  I would seriously consider the mastectomy if I were in your shoes.  Luckily, I only had one lump and haven't had anything else come up.  If it did though, I'd have a mastectomy in a second.  That's just my opinion.  I know you'll make the best decision for you.

Hugs,

Karen

sueps

Yes post trauma.... my how much damage does this ugly bootface do xxx

portiasproudmom

Don't apologise, Sue.  We all slip back into that panicked stage on occasion.  Just remember all you did to make sure this stupid disease doesn't come back.  You are the bravest, strongest person I know.  I just know you're fine!!  You're going to live to a ripe old age. 

Love and hugs,

Karen

lvtwoqlt

Sue, I have heard this on the boards Breast cancer . . . the gift that keeps on giving.

We do all panic at times just don't let yourself go to the dark area. Your doctor should be able to get you to a therapist who can help you with these thoughts and dreams you are having and help you take back your life.

Sheila

roderadio

hello sue...i read the beginnings of this board topic and was very concerned with your suicidal thoughts from last year...i actually wondered what had become of you...it was comforting to see YOU comfort me in my time of indecision...i've kept a relatively calm outlook on life with this affliction but just needed a sense of perspective from others who would understand...i'm sorry to now see that you are still dealing with feelings of trepidation...did a new lump emerge?  is that something to still be fearful of even after a mastectomy?  to the other ladies, you'll be happy to know that i scheduled a consult app't with a new breast surgeon...should i decide on a diep mast (and thus travel away for it), i will return home to a more compassionate and available doctor who can perfom the post-op exams...i'm still on the fence about the lump vs. mast decision but either way, you gals were right about first getting a second opinion and finding a new surgeon...i WILL be writing a scathing letter to the doctor about the unprofessional and unsympathetic manner in which his office staff deals with patients...

sue, if i may suggest what has helped me remain calm in the eye of this storm--i was part of a clinical research study that measured the effects of stress management on early stage breast cancer...i was placed in a 10 week class of tai chi...it greatly reduced my level of stress and taught me deep breathing techniques that worked...there's something to that whole mind-body connection that rings true when you take the time to focus on yourself and your mental/emotional state of being instead of expending time and energy stressing about things you cannot control...please try it or yoga and/or speak to a social worker who will listen to you...you are a full year ahead of me in treatment and i don't want to see you go backwards too terribly...i suppose a certain degree of fear is still to be expected...and i know the ladies here have banded together to get you through this...you are fortunate...

i am 32 and can't wait to be on the other side of this, growing back my hair and feeling healthy and whole...for my sake and the sake of those who love me and depend on me...i am still undecided as of the time of this posting...and may have the decision professionally set for me by a team of experts since i have just received calls regarding app'ts made for a mri this friday and a mutil-specialist conference next monday...

the squeaky wheel gets the oil...lol...i must have told enough nurses and receptionists in other offices about my disappointment with the support staff at my surgeon's office that someone decided to do something about it and get the ball rolling on these app'ts...thank god...

thanks again for enduring my outpouring...i'll keep you all posted....

smile...because it positively affects whomever is watching you...

livesstrong

Sue - did I ever tell you UB's nurse told him that post -traumatic stress is what he is suffering from.  It is real AND it is treatable.  Of course UB decided not to be treated  - JERK!

But we did sign up for a Tai Chi course - thanks rod, for filling us in on your experience with it.  I can't wait to start it, we go in 2 weeks.

A big hello to everyone, bbl

my3girls

Hi dear sisters...just at work catching up on your posts.

Sue darling...I agree with everyone..you do sound like you are suffering from stress due to bootface...how normal is that?? Of course, maybe seeking some professional help is in order. But I will hear of no silly talk of you leaving this planet anytime soon. You will grow old...and see your dear sweet boys get married...have children of their own, that YOU WILL SPOIL ROTTEN..haha..and enjoy all that life has to offer in our "golden years".  This I truly feel in my heart dear Sue...funny...I have felt it from the beginning with you..from the first time we met.  I love you dear Sue....and can't wait for the day that we all get the pleasure of meeting you in person...you spunky little ball of energy!! Whew...give me some of it please!! haha.

Val...Glad to see you and UB are going to take a Tai chi course...let me know how that goes.

Remember dear Sue..."worry is for shit" !!! Don't ever forget it....I know my dear Baba (grandmother) would be happy that you are remembering that....and I am sure she is watching down over you and all of us...She would do that for me!

Better get back to work.

xoxo

Lisa

sueps

Sisters xxx

Thankyou so much for your advice, it is very much appreciated.

I know I am in a lil black hole this moment, I am very stressed ... I have woken up to this ...let me see...what bothers me...is that I have had terriible terrible nightmares about some absurd chemo...and I would be terrified of the mental strain if I had to do it all over again...very bleak thoughts...if it wasnt for these life like dreams I think I may be ok...and all these came on after seeing my surgeon cut into me in the same room as the op...that day I became slightly detached I guess..

I am not too bothered about awaiting the rsults as much as my head...

AE I would love to know how you and UB get on....pleeeeasee ....Roderadio thankyou so much for your post it helped a great deal. (I think the lump was scar tissue, I find out next week) but this is far from my head.

I am sure its a setback mentally, I have lost all interest in work ... oh my ...get a grip Sue...AHA something else ...my freaking hormones are raging....

I really need this holiday in November and to spend some quality time with the boys xxx

... Thanks Lisa ...I love that phrase.... I am going to try and go back to positively living in the moment xxx

Hi to every one of my sisters .... I love you all xxx 

1Cathi

Dear Sue,

I have been visiting the boards alot lately as I have some big choices to make with my own DX and some recent tests. But I am not going to bore you with that, I have been reading this thread and I so   hope some how some way you are able to find some sort of peace with this whole BC DX. 

The thing about coming to the site that is most helpful for me  other than the knowledge that I acheive from everyone is the freedom to be able to feel my feelings and know that who I am sharing them with truly understand - there is always someone here who has felt the same way -  If I come on mad, sad, angry and yes even happy  - It is ok.  No matter how wonderful a spouse or how great our family and friends are -  they just don't get the whole picture. This site and all of its members are truly sent from above.

Now - for 2 years I have been trying to fiqure out the reason behind this whole stupid DX - why after finally getting out of a 20+ year rotten marriage, after meeting prince charming (for real), being only 46 at the time why would God dump this crap on me -  and just one month after being married.  I had truly never been happier in my life -  but there it was the big C - and like you many times I just wanted to give up and die -   I had a 2 year old granddaughter at DX - I seriously choose who I wanted to be her replacement ME-MA and instructed her on all the things I wanted her to do and teach her. (I was bonkers for awhile).

Well I have come to realize that God isn't ready for me yet  -  I think I might be to "out there" for heaven yet (I can still sport a good mini skirt- LOL).  Someday he might be -sooner than I think it should be,  but before that happens I am going to do my best to enjoy what it is I have today and tomorrow.  Oh I still have my days when I hate this SH_T, I cry, rant and get sad,  but I move as best as I can past it.

I have also decided that the reason for this all is - my daughters (26&28) while in that 20+ yr rotten marriage I did not give them all I could, I did not teach them all I should,  with this DX and all the crap that comes with it, I hope to teach them strength, self respect inside and out (we are beautiful with or without boobs) and they can perservere no matter what junk is put on their plate.

Sue I am sorry for rambling - I just truly feel your pain and hope that some how we all can help you be just a bit at peace.

MUCH LOVE AND SUPPORT-  CATHI XOXOXOXOXO

sueps

Cathi xxx

I am lost for words and I am profoundly grateful for your post....it was what I needed tonight...as I inch myself out of this mess in my head....Thankyou for your support....and geez you have gone through much yourself....I would have been blaZing with bootface if it had interuppted my life in the timing it did yours....xxx

I cant tell you how much I love and respect all my courageous sisters...I feel safe here and understood...this is what got me through it...this is my support mechanism , I need to come here more often...I am still crashing at night from chemo believe it or not...and my bone pain is horrendous ...ENOUGH SUE!!!

I want to apologise for tonight and my low moods .... I need a group hug xxx

I wish to heavens I lived near ALL OF YOU XXX 

my3girls

(((((((((((((((((((((((((HUGS FOR SUE!!!!!!!!!))))))))))))))))))))))))))))))))))))

Feel it Sue..they are real...and all yours!!!

Welcome Cathi...and thank you for your wonderful post! Funny...I too got out of a 22 yr marriage to then marry someone I thought was a truly great guy..and 3 mos after my marriage was dx with BC...but I think God brought it to me for a different reason. It opened up my eyes to who this man that I married really was. My illness made him show his true colors...and he left...and we were divorced 6 mos after marriage.  I am glad your prince was there with you.  I am not sad at all about what happened to me.....greatful actually!

Love you all ladies!!

xoxo

Lisa

1Cathi

That is one thing you don't have to do"apologize here" I have so learned that.  Sue please PM me any time, please e-mail me any time  (cathiads@yahoo.com) .   Call me -  I work from home I am here pretty much 24/7

You are ayoung - beautiful woman with children who still need you to teach them they are strong and CAN DO ANYTHING!!  You must believe that and tell yourself that always -the strength will come -  I sure did not think so  -but it did.  BUTTTTTTTTTTT - it is still ok just once in awhile to have a very SMALL PITTY PARTY - short and brief my dear friend. 

THE BIGGEST GROUP HUG IS SENT YOUR WAY!!! XOXOXOXOXO

sueps

Ohhhhhh my .... I am very humbled ...thankyou for the love in the room tonight ...it is enveloping my inner self ..... I am that lil more forward...the brick wall is shifting a bit.... Much Love...I am going to bed shortly...I so cant wait to meet you all xxx

All my love xxx