Podcast: Hope After a Triple-Negative Diagnosis
Comments
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Hi all,
I was TN Grade 3 with a 1.9 cm tumor with 1 positive SN and 1 positive intramammary gland both with micromets (Stage IIa). I had a lumpectomy and re-excision (clean margins) in Oct. 2011, followed by ACT, 25 rads, and 5 boosts. I am very concerned since I never had a PET scan. When I asked my BS about getting a PET scan, she discouraged me. As it turns out, I was diagnosed with Stage I uterine cancer in Sept. 2012 (no lymph node involvement) and had a complete hysterectomy in Nov. 2012. Maybe if I had had a PET scan before or after my BC surgery I would have found the uterine cancer even earlier. Now I am worried that maybe there is something else my drs. missed. Does anyone have any thoughts on when a PET scan should be ordered? I seem to be one of the few BC patient who never had one. Thanks.
Susanella
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Susanella that is a fight we are all up against. I only got one when my Ultrasound showed my had returned in my lymphnodes and pectorial muscle. They don't like to give them to us unless we have symptoms and I think that when there are symptoms it is or might be to late.......just my opinion. I would ask for one if you have not had one at all. You will have to fight for it. Almost makes one want to lie and say that something is bothering you when it might not be but cancer is a thing we don't want to call wolf about...........:( puts us in a very bad spot
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Stupidboob,
My diagnosis is same as yours. I'm currently on chemo, have done 4 DD AC & on my 2nd of taxol. I was wondering if you had rads or not. I'm trying to figure out what to do.0 -
Hello
My name is Elissa I have TNIBC and I have really be blessed I am not going to let being TN change my outlook I can beat the cancer ... and so can You hang in there sisters ..
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Hi,
My name is Dana...I'm 32 and have been diagnosed with stage IIIc tnbc. I have been healthy my whole life. And have absolutely no family history of cancer of any kind. I was just tested for BRCA 1/2 and it came back negative. This has just been a slap in the face to my family, friends and I. I started AC treatment 6 weeks ago. The plan of attack was to do 4 rounds of AC biweekly, followed by 12 weekly doses of Taxol. However, after 6 weeks of AC there was little to no change in the tumors. So I got a call from my onc letting me know we were gonna skip the last AC since it has not proven effective. And on monday I will start a combo of Taxol and Carboplatin once a week for 12 weeks. Then do surgery and then 5 weeks of radiation. I have said from the start that I was gonna kick this cancer in its a**. I am praying and trying to stay positive. But I'm scared and part of me still can't believe this is happening. Are there any survior stories similar to mine out there?? Any words of wisdom would be much appreciated!!!
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Dianamarie80 welcome to the club that none of us want to be members of. You are fortunate in some ways that you are having your chemo first before surgery. Many of us have surgery first and don't know if the chemo works or not until the cancer comes back. Your doctor seems to be on top of things and I am sure that they will find something that will work for you. Best of luck to you in your treatment.
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Dana, I was diagnosed almost exactly a year ago had had very good luck with taxol/carboplatin shrinking my tumor. Only prob was I had dizziness side effects halfway through, then had to switch to adriemyicin (sp?). I did chemo first, then lumpectomy w/sentinel node. No live cancer cells were found. I'm back at work, getting strength back. Now my mission is to prevent recurrence. Seems like controlling stress and inflammation must play a large part. My new motto is SEEK PEACE. I wish this for you, too. Please keep us posted of your progress.
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Dana...I felt like I was reading my diagnosis all over again! I am 32, TN, and Brac Neg. I am healthy, exercise, and eat pretty good. My onc tried to help me understand how or why I got this and he basically said you got struck by lightning!! Anyhow...it's ok to feel scared and down...just pick yourself up. I did 4 Dose Dense AC followed by 12 weekly Taxol. About a month later BMX. 6 weeks later Radiation. I just finished my last whole breast radiation and will start my Boosts next week! I promise you will get there! I got teary eyed on the table thinking about all that I have been thru this year and not thinking I would ever see the light at the end of the tunnel! If I can help in any way let me know!! Keep fighting!!
Cherri
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Hello DanaMarie80 (Dana)
I just wanted to send you my best wishes as you go through your breast cancer treatment. I hope that the Taxol and Carboplatin will work for you. You can get through this. Just take one day at a time as chemotherapy is the hardest part of the cancer journey. You will need to drink plenty of water during chemotherapy, get plenty of rest and keep looking forward. I was diagnosed with a large tumour in June 2005, had chemotherapy before surgery and this is often done with a large tumour or advanced stage. On my own thread, Calling all triple negative breast cancer patients in the UK some of the younger women have had weekly chemotherapy and have found it easier than having it every three weeks.
It is normal to be afraid and to be in shock, but this will pass as you get on with your treatment which will keep you busy.
If I can help in any way please ask. There are quite a few American women on my thread, informed and compassionate and they will help.
Thinking of you and sending kind thoughts your way.
Sylvia xxxx
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Hi have just found this forum and am in a blind panic, got my records from the hospital today. Feel really stupid as didn't realise what I have been up against for the past year.
Found my lump in June 2012 it was removed in Sept. Then 13 rounds of chemo, Epirubicin then CMF. Then 25 radiotherapy.
Was feeling positive and looking forward to getting on with my life. Knew I was hormone neg with no node involvment, I really didn't realise what I am up against !! Sitting crying. Like being diagnosed all over again.0 -
I was diagnosed in December 6 2011 with TNBC. I am also BRAC2 carrier. I had 4 rounds adrismycin and 12 rounds of taxol followed by bilateral mastecomy on 6/20/12 also biopsy on lymph nodes before surgery. I am cancer free now. During chemo I never got sick had good nausea drugs. My cancer was IIA grade 3 size 3.8 cm . My thoughts and prayers to all of you it's hard I worry all the time I'm trying to go on with life but always worry . I also had 28 rounds of radiation. After the 3rd round of adrismycin breast MRI was done no signs of tumor noted . Very good news ladies we can beat this !
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Dana, I was 30 when I was diagnosed with stage IIa TNBC in 2011. I have no family history and am also BRAC1 & 2 negative. I too had the dd ACT treatments followed by a bilateral mastectomy with reconstruction. Reading this thread has shown me that there are more early 30 somethings with TNBC out there than I thought. People always look at me and say "But you're so young". I'm starting to realize age has nothing to do with it. It IS a slap in the face but you can do this!!! Keep your chin up. Although difficult at times, keeping a positive outlook was incredibly helpful for me.
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Hello everyone, I am new to the BCO boards. I wanted to extend my best wishes to you all in whatever stage of this fight you are in.
I am newly diagnosed TNIDC (3/13) and am so thankful for my faith in God or else I don’t think I would be able to get through this cancer stuff. God gives us Grace to handle today. Not tomorrow, next week, next month or next year! I have to remember that. It really helps!
I have just finished 12 weeks of Taxol and supposed to start AC, this Thur, for 12 weeks followed by lumpectomy then 30 days of radiation. However, my tumor has doubled, if not tripled, in size and I found a lump in my armpit. It’s not an ‘ingrown hair’ as I have had those and can tell the difference... this is deeper, smaller, it’s just different, etc. I see my MOC on Wednesday to discuss what is happening. Praying it is just a cyst of insignificance and we can move forward. However, I wondered if anyone else has found lymph nodes after starting chemo and how small they can be? If you have found them during chemo did it change your current treatment plan? Also, has your MOC ordered MRI/PETscan in between chemo treatments such as; T & AC? Thank you for any insight, stories and opinions.
It blesses my socks off to see everyone being so encouraging to each other!
Love you ALL!! And am praying for each of you! Psalms 94:18-190 -
Hi Everyone,
I wanted to share this with you!
I'm taking a certification class, and the president of the company is the one holding the class. I know of him through another organization that I belong to, and I've known that his wife was a BC Survivor, but I didn't know much about her or her bc until I took this class. I had also known that it was an aggressive type of bc, so I had wondered if it was TNBC. I finally got the chance to ask about her and find out more!
She is a 10-year Survivor of TNBC! She was dx'd in 2003 with 11/13 nodes positive, and her tumor had grown from 1.5 cm to 7 cm in the initial 3 weeks that they were going through appointments. She was stage 3. She had a UMX first, followed by chemo and radiation.
She is healthy and living a full life!
She read a book called "The China Study" (I just downloaded the 30 minute short version), which influenced her to where she changed her diet dramatically, she also incorporated exercising, juicing, and now she does yoga and meditation, but I don't believe she did yoga and meditation right away. She also employed several other things, such as refusing to let fear control her and really developing a fearless consitution. She tackled it from every angle it seems!
I also saw on TV the other day, that if you want the benefits of juicing, but don't have a juicer, or feel it's too time-consuming, that you can do it another way. You can blend the ingredients, and then use a small strainer to pour the liquid into your glass. You will have juice, without the pulp, just like juicing. I've gone out and bought my strainer, and now will be looking for some great recipes.
By the way, if you don't have Kindle, guess what? You can download (for free) the kindle reader for your computer, and then buy the books for Kindle and it places it right on your computer. I don't know how I discovered that, but it's awesome, and I'm a maniac now buying all these $1.99 to $3.99 download. I think actually if you go through Amazon, they have it set up to where you can press a button next to the ebook, to download the Kindle to PC program, instead of having to go out to the internet to look for it. I'm thinking now that this is what I had done!
With our diagnosis, we all have hope and at times fear. I'm hoping this positive story to refer to will uplift you all!
Hugs,
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Well, I went to my follow-up appointment and my husband and I finally got the MOC concerned enough with the size of my 'lump' to order an U/S which I had yesterday. After having the U/S the Radiologist immediately had me have a mammogram. Results showed significant growth of my tumor. Double in size from March to now. And lymph node involvement. I was so angry because I had been telling my MOC for 6-8 weeks that my tumor had felt harder and larger. he just kept telling me it was probably scar tissue. Saw the surgeon today and now I am scheduled for a Modified Radical MX and removal of all lymph nodes. When the initial plan was a Lumpectomy. The surgeon is even skipping the SNB at this point. I am scared but so thankful for my faith in the Lord and that I have an amazing support group.
I have been praying for you ladies and just remember we have to be our own advocates. If you think something is wrong then speak up. We know our bodies.
Love & Blessings
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I just want to say that you guys are very brave and very selfless to try to help one another through this difficult time. My son-in-law two cousins 32 yrs & 33 both passed away earlier this year from bc and my sister in law from a previous marriage just passed away last week bc. I've been so sad and cannot help but personalized the situations. I decided to want to learn more because it can happen to any one of us. I've been so sad these couple of days and since my sister in law kept her illness a secret I just wanted to hear it from someone who knew personaly how she must have been feeling. I hope this is ok with your guys. Much love to you all.
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Hello all. I am new to this but wanted to get some insight. I was diagnosed with invasive ductal carcingnoma, triple negative breast cancer stage 1, grade 3 tumor back in Nov. My surrounding nodes were clear as well as my PET scan. I had the bilateral massectomy and reconstruction and went through 4 rounds of chemo, no radiation. To give you a little history, I was also diagnosed with lupus about 2 yrs ago as well (thankfully not dabilitating). I finished my last chemo treatment just over 3 months ago. I went in to my follow up and blood work appears to be ok, but have had ongoing swelling in my lymphnode in my neck under my right front jaw line. I had a scope done today and my node measured just over 2 cm. I am not sure if it's the lupus flaring up, or cancer. My doc feels a biopsy may be in order. I am not sure how common it is, but curious if the cancer could have spread to my neck lymphnodes but not in the surrounding area where the tumor was? Any info will be appreciated..just looking for insight.
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Jbentley1, I just finished chemo 2 weeks ago and start radiation in a few weeks. My RO recommends radiation include my supraclavicle area because it can spread there. I hope that your biopsy results are benign.
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jbentley: unfortunately cancer can spread anywhere and unpredictably. But nodes can also swell for a variety of reasons so try not to think the worst until it resolves or you have more information.
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Hi Everyone,
To all those that have responded to my post. Thank you so much your stories and kind words are so encouraging. I just saw my onc today and got some not so great news. I have been on the new chemo; taxol/carbo for 6 weeks now with little progress. The node in my clavicle seems to have shrunk, but the nodes in my axilla are not shrinking and the tumor in my breast just seems to get bigger. So now we are going with a mastectomy and node dissection. Hopefully within the next two weeks I will have surgery. Waiting for monday to come so I can talk to the surgery center. Depending on how surgery goes...I will go straight to radiation for 6 weeks after I heal. If the cancer has gone metastatic then my only option is to go back to a different chemo combination. My onc was keeping it real with me that she is concerned that there may be no cure for me. I am scared beyond belief...at first I was afraid that I would never get married or have kids. Now...I am scared that I won't make it at all. How is this happening?? I am so angry and scared. Life was not supposed to go this way. I pray that radiation is still an option for me and that the cancer has not spread to my organs. I wanna kick this cancer is its a** but I have no control over my own body or how it responds to tx. As a person who has never been religious...I pray for a miracle. I am too young to die. Thank you for anyone who takes the time to read this. I will try to stay positive and not go to the dark side. Attitude is everything....
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DanaMarie, so sorry for what you're going thru! BC is never pleasant, praying for a miracle for you. Attitude IS everything, BCO is also here for venting when necessary. Sending you lots of ((hugs)) and ((love))!
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Thank you Maddy!! You are a true hero and inspiration!! Its hard to find people who truly understand what you're going through.
Xoxo
Dana0 -
DanaMarie, please keep coming back, here, and other threads. We can understand like no others can. I believe in miracles, surely you are deserving, so why not you?
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Dana: So sorry for what you are going through. As terrified and helpless as you must feel, there are other chemo regimens to try if it becomes necessary. Remember too that there are many, many of us out here who had chemo after surgery and have no idea whether it worked with us, or didn't... maybe surgery did the job. Will be thinking of you.
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Thank you Luah and Maddy for your support and good thoughts. I will keep everyone posted...I am praying for the best.
XOXO
Dana
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Dana, my heart breaks for you, I am so sorry you are having to go thru this. Please try and stay positive, there is always hope! Please keep posting and venting or whatever you need to do. We are all here for you.
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Even though you seem to be node free your tumor size of 3 cm would indicate stage 2 but there may be more to your case than you are indicating (stage 1 is less than or equal to 2 cm with no sentinel node involvement). Your decision to have lumpectomy is not one that many TN patients choose given the aggressiveness of TN and the increased survival rate afforded by mastectomy vs lumpectomy. Also your decision to forego chemo adds risk since 1) TN is very responsive to chemo and adds about 7-10 percentages points to your survival rate. 2) Even though you seem to have no sentinel node involvement there is a small chance (in the range of 2%) that metastatic cells could have escaped through the blood stream before or after surgery. Chemo is not without risks however, which includes possible damage to major organs and neuropathy to name a few. Also radiation is usually indicated with lumpectomy but not with mastectomy (unless the tumor is very close to the chest wall) which is also very tough on the heart and can usually be used only once. This means that if TN reoccurs radiation is usually not a followup treatment option. I would urge you to talk with your oncologist regards survival rates vs the various options and maybe also get a second opinion before totally ruling out chemo and mastectomy. You only get one shot at this so please consider everything.
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Jane73, may I ask why you say that there is an increase survival rate with mastectomy vs. lumpectomy/radiation in triple negative? My BS assured me there was only 1% difference and she has successfully treated many TN.
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Jane73 I too would like to read the evidence you cite re Lx versus Mx. It is completely inconsistent with the numerous studies I have collected over the years, and info that is posted right here on bco.org by leading TN doctors who recommend surgical options based on other factors, not TN. Also, where did you get that chemo adds 7-10% to survival rate, that there's a 2% chance of spreading disease, and that rads necessarily are hard on the heart? I don't think there are any hard and fast rules here, so much depends on individual pathology... which is why we are well advised to discuss our prognosis and treatment recommendations with our doctors.
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Gosh, I hadn't thought I couldn't before I read that OP.
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