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Laurarev View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2019 at 12:27pm
ok, so if Iím understanding this correctly, the doctors at md Anderson only use CMF as a third option? This is after theyíve used the other types of chemo on a patient. Or was that just in your particular case? 
Iím sorry you had that ďrare unicornĒ recurrence 😢. I hope youíre feeling well now!! Thanks for trying to help clear things up for me. 
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Laurarev View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2019 at 12:31pm
Ok, so if Iím understanding you correctly, the doctors at me Anderson only use CMF as a third option? This is after they have already used the other chemos on a patient. Or was that just for you in your particular situation? 
Iím sorry you had the ďrare unicornĒ recurrence😢 I hope you are feeling well now!! Thank you for trying to help clear up my confusion. 
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AnneB View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AnneB Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2019 at 12:02am
I am so happy that I have found this forum.  It has been a whirlwind 5 days since I was given the 'malignant' biopsy result and 3 days since I first heard that it is TNBC - and what that means.  The biopsy indicates that the cancer is between 7mm-9mm which the surgeon and oncologist tell me is good.  I feel like the surgeon is pushing me in the direction of a bilateral mastectomy because of the high recurrence rate, but the oncologist was pleased to hear that I'm leaning towards a lumpectomy.  I'd love to hear how each of you made the choices that you made between those two options.  

I have an 18 year old daughter who is about to leave for her first year of college and a 16 year old daughter who is about to leave for her junior year abroad to Norway.  It was no easy task to tell them of this diagnosis.  This is the time in their lives when they're supposed to be independent and selfishly enjoying these adventures - but their instinct makes them want to be here to take care of me.  I HATE THIS!!!

I meet again with the surgeon tomorrow.  I am not to the point yet where I am digging into chemo details because I need to first conquer the choice of a lumpectomy or a bilateral mastectomy.  

Again, I am so happy that I found this forum and the tnbc foundation website.  <3


Anne
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Kellyless View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2019 at 1:48am
Welcome Anne, so sorry you and your kids are having to go through this.
May I ask why you think you need to make a surgical decision now? You can wait until your through all of the testing they're going to do: a breast MRI to get a better measurement (ultrasound is not real accurate), genetic counseling and tests, CAT, Bone, maybe PET and others - then you'll have lots more info. With yours possibly being a CM or a lil less, your likely candidate to do chemo first, possibly killing all of the cancer, a pathological complete response. All of those those things will factor into a surgical decision. My advise is to just breathe, wait for all of the information to be gathered. Meet with the medical oncologist. Meet with the radiation oncologist. There's no reason at all to make a surgery decision now, when you've got so very little info. If any surgeon pressures you for a surgical decision before you've done all the tests and met the other oncologists I would consider a second surgical oncologist opinion as well. Yes, acting quickly with TNBC is important, but you've time to do it all the right way. The more info you have, the easier it will be to make a plan, a plan that will leave you with no regrets. 

PS: the high recurrence rate for our disease that is constantly mentioned is NOT for a recurrence in your breasts, unless you have a genetic mutation. The recurrence is elsewhere in your body. A successful full course of treatment, with either chemo & mastectomy, or chemo, lumpectomy with clear margins and radiation - do indeed have the same recurrence and survival rates. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (1) Thanks(1)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 22 2019 at 7:31am
AnneB,

I echo everything Kellyless said.  If you have any doubts, please consider getting a second opinion.  For a small tumor, unless you have a genetic mutation or a family history of bc, you have more choices for surgery options.  Take a look at this study comparing surgery options for early stage TNBC:



DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jul 24 2019 at 8:47pm
Anne, 
I can only speak for what I personally did, but there are women on this forum who know A LOT more than I do. I met with two different surgical oncologists and two different medical oncologists to get second opinions both times  I have not met any radiation oncologists yet. I was given the choice by both surgeons to either have a lumpectomy or double mastectomy. At first I just couldnít understand why I had to make a choice. Why werent they just telling me what had to be done? I ended up going with the surgeon at memorial Sloan Kettering because she explained what Kellyless said. That if the cancer was going to recur it was not a guarantee that it would come back to the breasts. She said some women just feel betrayed by their breasts and want them off. That being said they thought my tumor was 13 mm before surgery... it turned out to be 9mm. Either way, the surgeon and oncologist agreed that I was in a position (being less than 5cm) to do chemo either before or after lumpectomy. Either way was ok and we all decided on lumpectomy first. The tumor had a 70% proliferation rate and  I just really wanted it cut out of me. I still havenít even received the results of my brca test and itís been 6 weeks.  The surgeon said if God forbid the cancer did come back, and if it came back to one of my breasts, then I could say I want the double mastectomy. So I had the surgery on June 25th (almost exactly one month after I received the biopsy results) it was only 9mm, all margins were clear, and itís not in the lymph nodes. So now next week Iíll start the ACT chemo. 
Although Iíve had a little bump in the road as Iíve been in the hospital the last 5 days. I went in on Friday July 19th for the port surgery and there were big complications. Apparently my anatomy is weird and I have a 1 in 10,000 anomaly. The arteries are in front of the veins instead of vice versa. The surgeon I chose is an ďexpertĒ at ports and all the chemo nurses love his work. He said heís never seen anything like what he saw in me and heís been putting in ports for 24 years and has done over 1500 of them!  He eventually closed me up with no port after trying for over an hour. But now I have blood pooling in the pleural cavity around my lungs and a possible clot in my jugular vein. Iím getting that checked by a vascular ultrasound tech tomorrow at 7am. The interventional radiologist ended up putting in a port on the other side yesterday. Needless to say Iím in quite a bit of pain. Well, such is life! 
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 24 2019 at 10:16pm
Oh Laura, I've never heard of that complication with the port surgery.  It sounds so dangerous.  I hope they can resolve the issues so you can come home soon.  Please keep us posted.  We are worried about you.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2019 at 11:08am
OMG Laura,.that's just a nightmare! In my 10 years being a part of the cancer community that's the worst port complication  story I've ever heard. I can't imagine the horror of waking from a "simple" routine procedure and having to grasp all of that! I'm so very sorry this is happening to you. If this were me, I would want another surgeon, one completely not attached to this doctor or hospital, to do a full review of what has happened. I'd want to meet with her, and have her explain what she sees as happened, what she understands is your anatomy and what he did to it. Just.....because. Because I'd want to know For Sure going forward what happened to me and WHY. Hopefully you'll now do chemo &  radiation without incident, but I'm the poster child of You Never Know For Sure what your medical future will bring. You're bound to have some hospital and surgery PTSD going forward, in my experience knowledge is power over that condition. (I have it from my surgical nightmare and 9 months of wound care resulting from it) keep us updated on what's happening, I'll be thinking of you.
PS: to everyone getting a port - this is normally a very quick, simple procedure. I've had two ports. Pretty much zero pain, from post surgery to removal. I never even had a smidge of discomfort having it accessed, and both times they used them for ALL blood draws, IVs and infusions. 
PSS: WHY are so many ladies having blood draws from their arms when they have ports lately??? I've spoken to several lately that even on infusion days they draw blood from their veins, AND access the port for infusion?? The whole point of the port is to save your veins, and not make holes in you while you're anemic, lack an immune system or barely have any platelets left making you a bleed risk? Even at the hospital, when I went to the ER chemo sick they called a port certified nurse down from the cancer floor to access my port for the IV! One person's theory is the clinics are too cheap to have nurses in their labs that can do the access, using cheap phlebotomists instead? I just don't get it.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2019 at 11:29am
thank you for the concern ladies! I barely slept last night. Unbelievable pain on the left side where the pleural cavity is filled with blood. I went to the 7am appointment for the vascular ultrasound tech to check the jugular. I sat there whimpering in pain with tears streaming down my face. How am I going to start chemo on Monday when Iím in so much pain? Now I have a fever of 100.8. I called the oncologist who is trying to reach the port surgeon (the 1st one who encountered the weird anatomy)  heís in surgery right now so the oncologist said sit tight while he keeps attempting to take to him. Iím going to have to go back to the hospital for another chest X-ray, something is wrong 😢. Oh and by the way, I donít think I should have a fever at all being that Iíve been on cipro the past 9 days for a little infection I developed at the incision site of my lumpectomy 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Jul 25 2019 at 11:32am
forgot to mention that the cardiologist has not had a chance to read the ultrasound from this morning yet, but they were looking for a pseudo aneurysm, thrombosis, or occlusion.  Although the oncologist said even if the report finds any of those itís going to be unrelated to the pleural cavity pain I feel now and the fever 🤷🏻‍♀️🤷🏻‍♀️🤷🏻‍♀️🤷🏻‍♀️
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Melanie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2019 at 6:04am
hey Laura, 
That is so horrible. I canít imagine what you are dealing with. 
Just chemo is enough. Let me know how you are tracking and when you start. We seem to be going through the same treatment at the same time. Nice to have a journey pal. 
I have had my planning and will be starting dose dense AC-T on Monday 5th of August. 
I am not having a port as yet. 
Just concerned about one margin which was only cleared by 0.01mm. The oncologist is getting a second opinion. 
Iím going to try the ice cap to keep my hair, not sure if it will work though or if I can tolerate it. Hair seems a big deal but in the grand scheme itís probably not. 
Mel 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Melanie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 30 2019 at 6:20am
hi Anne, 
I too was recently diagnosed. I had a lumpectomy and removal of lymph node. Clear margins and I start chemo Monday the 5th. Here goes!!
Good luck to you, keep us posted. 
Mel 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2019 at 6:14am
Hi Laura- 2 books I have found really helpful are Staying healthy on chemo by Mike Hebert and Rebuild by Dr. Z. I donít think anyone commits to scientific data regarding food restrictions but the most consistent recommendations Iíve seen are plant based diets and limiting sugar. 
The only other thing I added a week before chemo started was full spectrum 2000 cbd oil (Amandahemp.com). I donít know that itís helping but Iíve had no nausea, no fatigue, no anxiety, no sleep issues (except the first night after infusions I take melatonin too because the steroids hype me up).
I know youíre experiencing a lot of other issues too but maybe these few things will give you a little relief, or at the very least something to focus on that you have control over since there are a many things you canít control right now.
Prayers 🙏


Edited by Danzig482 - Aug 01 2019 at 6:22am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2019 at 6:26am
Kellyjess - did they do your blood draws from your port with one stick then stick you again (port) for the infusion? I was wondering why I had an arm draw too when I heard many use the port but itís not been difficult to find a vein so I hadnít questioned it. Also I thought 2 port sticks within a half hour of each other would be weird too 🤷‍♀️
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Aug 01 2019 at 11:31am
Laura, I have just read your account of your port surgery and even all these miles away in France, I couldn't help shedding a tear for you!
I hope you are more comfortable today and that everything is improving.
My port surgery was horribly painful but NOTHING like yours!  I was told it would take 20 minutes but it ended up taking an hour.  Only local anaesthetic and I had to keep my head turned in the opposite direction the whole time.  The surgeon kept saying my veins were too small and he had to have 3 tries before finally putting it in at such an awkward angle that the thing used to dig and cause pain when I slept on that side. The local anaesthetic didn't last the whole hour and all he did was kept spraying some stuff on yet another site in my neck.
I too had an infection and I can feel all the fear come back, just thinking about it from reading your story.
For people asking about taking blood, etc, all my bloods were taken at home using veins in my arms the day before the next chemo.  But at the hospital, everything was done through the port.
One other thing to mention is that I didn't know about the numbing patches that you get to put on the port about an hour beforehand and then you feel no pain.  Unfortunately for me, I'd had 5 sessions before I discovered from a friend that I should have had the patches.  So I only had one single pain free puncture.  How I used to dread the chemo sessions!
I have had my port removed straight after the radiotherapy (33 sessions).  It bothered me the whole time I had it and the sight and feel of it reminded me of that theatre session.  After the removal, a dent and an angry-looking scar remained.  But now, just over a year later, the dent has filled out and the scar is not very noticeable anymore.
You have had such a scary and painful time, Laura, I just wanted to send you my very best wishes and I shall be thinking of you, especially in my prayers.

 

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Laurarev View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Laurarev Quote  Post ReplyReply Direct Link To This Post Posted: Aug 04 2019 at 9:44pm
thank you so much ladies... to all of you!! For your prayers, your advice, and sharing your stories. I am sorry for those of you that have also gone through pain, and I pray for all of you still in the midst of the chemo/ surgery journey. 🙏🏻  
Iím sure youíve all been wondering how Iím doing, I just couldnít even go on the forum, or the phone for that matter, Iíve had so much pain. I ended up starting the chemo last Monday, July 29th. I truly donít think my body was ready for it, having not healed from the hemothorax and pneumothorax. All the tests showed that there are no blood clots, but there is a very large amount of blood in the pleural cavity. All of the doctors involved have validated the extreme pain this causes, but they said we need to wait 4 weeks to several months for the body to naturally absorb the blood. My general practitioner suggests I see a pulmonologist tomorrow. He said she is the one who should really give the final answer as to how this should be handled.  The chemo kicked my ass... I guess because I was compromised already. Today is the first day I feel even remotely normal again, but still severe pain when taking a deep breath and a very sharp knife like pain in my right temple ear area that comes and goes. I can only sleep on my back in an upright position, so I am exhausted every day.  My oncologist had me on painkillers, but I kept getting a fever that was creeping towards the 100.4 cutoff so he said I had to stop them and take Advil and Tylenol instead. I was up all night Monday night, I guess from the steroids. Even though I took a melatonin and a Xanax (which at this point Iím taking every night along with cbd oil).  Nothing is helping. Wednesday I woke up with intense abdominal pain, diarrhea, and vomiting. Just so so sick on top of everything else. To hear someone even open a wrapper in the other room hurt my head. I hate to complain, and this is normally not how I am. I knew chemo was not going to be a walk in the park.... but this has been over the top. I truly think itís because I didnít go into it a healthy person as a result of the port surgery. 
Well, Iíll try to keep you all updated. Please keep saying your prayers for me as I will for all of you! ❤️🙏🏻
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Danzig482 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2019 at 7:17am
you are doing great considering your extenuating am circumstances. Itís true you will feel the effects of chemo more if you arenít  100% to begin with.
2 books you should try are Rebuild by Dr. Z and Eating healthy with chemo. They are great reads and will help you focus on something besides the road bumps your having- and perhaps gain some tips to keep you strong 💪 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2019 at 7:54am
Laurarev,

How awful you are dealing with all these complications.  I hope the pulmonologist has some answers to help alleviate the pain.  Waiting for the body to absorb the excess blood doesn't seem like the ideal solution.  I agree that your compromised body is feeling the effects of chemo more so because of your situation.  Hope they can resolve the problem so you are not in so much pain.  Keep us posted.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Aug 06 2019 at 9:46am
Laura, have the doctors given you anything to help with the sickness and vomiting?  I had something called metoclopramide which worked well.

Also, don't forget (and I was told this by the professionals) that you won't necessarily get the same reaction to each session of chemo.  So let's hope that the next one won't have such nasty effects.

The pulmonologist would have some very clear views on how the problem with your lungs is treated.  I am glad that you are seeing one so quickly.  I had a marvellous pulmonologist (my problems were complicated by asthma which I have had for years) and the treatment I had from this doctor has truly turned my life around.  I am hoping that yours will give you treatment that will relieve your pain.

Be assured that we are thinking of you and continuing to have you in our prayers and hopes.

Lastly, thank you for updating us on your condition.  I was indeed wondering how you were getting along.  Take great care of yourself!  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote strongtogether Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2019 at 8:33am
Hi Folks!
 45 year old mother of two here! I was recently diagnosed with TNBC. I was checking myself in the shower and felt something .... went to see my doctor and got an instant referral to the breast clinic. . . I live in Brisbane, which is a city on the East coast of Australia. 
 Those days between the diagnosis and seeing the breast surgeon seemed to last forever. I  reality it was only about four days. I had no idea what tnbc meant. My initial instinct was to have a double mastectomy. The surgeon gently guided me toward a single. The Cancer was quite fast growing and quite big - around 5 cm. Surgery day couldnt come soon enough.
 The sentinel lymph node biopsy came back positive, and now I was really scared. I had an axillary clearance and a CT-PET Scan. Thankfully both came back clear.
 I am now in the middle of chemotherapy. The initial plan is two months of dose dense (bi weekly) followed by 13 weekly sesions. After that it will be 12 weekly chemo sessions. 
I am not sure what to expect. I am finding it tough, no one said this would be a picnic. Its true that the medication's side effects of nausea are well controlled, bu I am feeling physically tired. Again, this is to be expected. 
 Lots of love and support to you all.

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