Podcast: Hope After a Triple-Negative Diagnosis
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Syers, Gentle hugs to you. Hang in there!!! You've got many sisters here cheering you on.
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I am newly diagnosed with triple negative. I have had breast cancer twice before. I was stunned. Last two were treated with lumpectomy and then tamoxifen and femurs. I have had clean mammies for 14 years now this. Just finished Act for 8 weeks tolerated fine. mRi showed no change. Starting Taxol this week for 12 weeks then surgery. Very scared but staying positive. Tumor is 1.6. I'm told the lymph nodes did decrease even though tumor showed no change.
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3times, I'm sorry to hear about your third time around. Once is bad enough!!
I know another lady here on BCO that had TN over 20 years ago and she was just recently diagnosed with triple positive. She is doing well now.
There is plenty of support here on BCO. There is someone here to help you every step of the way. Sending good thoughts and gentle hugs your way. Please let us know how you're doing when you can.
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3times-
We want to welcome you to our community here at BCO! We're sorry for the circumstances that have brought you here, but we hope you find this community to be a source of support and encouragement as you begin this journey for the 3rd time. We're all here for you!
The Mods
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Do you know if she did chemo before surgery? I am struggling because I just completed the 4 rounds of ACT over an eight week period. I am about to start Taxol tomorrow. My MRI which was last week which was two weeks after the ACT ended showed the tumor which is 1.5 hasn't shrunk but two lymph nodes did decrease slightly. I'm being told to finish the Taxol before surgery. Any thoughts? Help very concerned.
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ilredpony
Prayers for you on this journey. ..that you will find yourself in the hands of people who aggressively seek treatments for you, as you face the unknown.
Mama chickie
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I am seeing several posts of those with TN bit not many with stage IV. My mom was diagnosed stage IV and the doctor was insistent that surgery was not am option. ..that it is not the protocol for the stage of diagnosis. My prayers go out to all of you as you continue to fight this disease.
Daughter of mama chickie
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Ok gals I need your help........had a scare a couple months ago a lump which turned out to be fat necrosis, doing the happy dance.
But over the last couple of months have had and still do severe pain in my hip. Onc thought it was just arthritis....took an xray....said he sees arthritis but on the pelvis there is a spot that looks odd so he wants to do an MRI to find out what it is.....this has got me scared to death....DX two and a half years ago with triple negative had a DMX two years ago took out 6 nodes all negative....had a free tram reconstruction....have had little problems since....had AC and Taxol.....anyone been faced with this before what are the chances I could have bone mets?
I know there is life after Cancer.....we are all survivors and cancer warriors........hang in there everyone.....it will get better and life on hold will be life enjoyed and relished later stay strong my friends. God continue to give you strength and open your eyes to the beauty around you. Breath deep and take in life fully on a daily basis.
Onc.
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I know this has been up awhile. I just joined, I have Stage 3b triple negative Inflammatory Invasive carcinoma. This will be my second time around
The first time was 21 years ago when I was 45. It was a negative then also. I had a lumpectomy done. All of my lymph nodes removed.
The problem did not show up in a mammogram done in the late fall of 2014. I noticed color and skin changes in July 2015. I finally went in to see my GP the first of August. Long story short. The mammogram did not look good as well as an ultrasound. A guided core ultrasound was done confirming the cancer.
My surgeon felt it was to large to remove so I went directly to chem. 4 cycles of A/C. Lost my hair the second week. Went from the A/C IV Infusion to 140 mg of Taxol IV once a week.
I was able to withstand 6 out of the 12 treatments. My treatments were stopped by my oncologist because I had been in the hospital 3 times for side effects. The last time was pneumonia, which I got from being so run down. Plus had to have a blood transfusion. I know the tumor has got a bit smaller. Regardless I see my surgeon March 3, 2016. No and it or buts this breast needs to go. Just wondering if anyone else has had to go through something on this order. No one is really telling me my chances of survival at this point in time.
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It is possible that when the breast is removed all of the cancer may be removed also. In that case you may not have to be radiated.
Check with your oncologist. I know we all get chemo brain so write it down as a question to be asked.
I have had all I can take of chemo first. So now I am waiting to see my surgeon.
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Hello TN gals, I'm new to TN as this is my second go round with BC. My first was last year I had stage 1a grade3 ER+ PR - HER2-
TAHDA! my new one 6 months after a Dmx with reconstuction in Aug 2015. in Dec 5 I had finished my exchange. I was on the down hill slide I was doing AI's. I have now TN and had a lumpectomy Feb 5 and a new Port in Feb 16 Chemo starts tomorrow 4 treatment every 3 weeks of Docetaxel and Carboplatin Best of luck to you all POSITIVE ATTITUDE!!!!
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Hi Vicky710,
Sorry you found yourself here but we're glad to see that you decided to join us.
The community is full of informed and supportive women and men who will understand what you're going through.
We hope you come back often and update us on how things are going for you.
Sending big hugs your way!
The Moderators.
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Vicky, welcome to Breastcancer.org! We're so happy you decided to join in! We know you'll find lots of answers here.
Happy posting!
The Mods
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triple negative stage 0 grade 3 second time three years ago same type had lumpectomy and 33 radiation treatments. But 3-30-16 found on a routinel mammogram. Scheduled for mastectomy July 18 now getting worried that's too long to wait. Any thoughts
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bccancer44 and bunny1966 you guys still give newbies like me hope. I know recurrence is highly possible but with your examples i'll still be able to make it.
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In a few days, my Dx and Px will be 4 ( FOUR!) years out. I know that four years is not very long term, but I'm satisfied for now.
I really have no idea why I'm still here, but my 'work' must not be finished.
I wish all of those who have had the dreaded Triple Negative diagnosis with Grade 3 aggression, a continuous NED status.
It is possible... one day at a time :-).
My dear GD1 has one more year of university until graduation. She is a miracle!
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Hello,
I'm from Nevada. Diagnosed in January, a week after my 42nd birthday. I have done AC+T on a dose-dense schedule. My final chemo is next Thursday, and I have appointments with PS and BS and MRI over the next two weeks before heading into surgery. I have had amazing results with the chemo. Before starting chemo it appareaed by MRI, ultrasound, physical exam that the tumor was upwards of 5 cm. Now, my oncologist cannot clearly identify the tumor through physical examination, So I have been VERY lucky.
I do have a question though. From my reading it seems that TNs have a higher rate of recurrence, and a lower survival rate. I am trying to decide about my surgery options, and I feel compelled to have a DMX to eliminate the chance of the cancer coming back as breast cancer. Do any of you have thoughts about your surgeries that you chose. Do you wish you had done something different- been more or less aggressive with your surgery? I kinda feel like I'm losing my mind with this decision.
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Amy, Hello! That wasn't a very nice belated birthday present, was it! Seriously, glad you found this wonderful website. To answer your question, for me, I did not have a choice regarding surgery options, IBC is treated with a double mastectomy. But if I had a choice, I still would have wanted to be as aggressive as positive. This way I can say I did everything possible, no "what ifs". Curious too what other responses you get, I hope once you decide you will feel at peace with the decision, I think you will. I am so glad you are responding well to your chemo! This is terrific news. Please keep us updated on you and your decision support regarding treatment. Hugs to you.
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hi Amy,
Just read your question and feedback request regarding surgery option.
It is a very personal decision and so I guess you are picking our brains about what was our thinking, hopefully this will bring home differing points to consider.
I personaly knew I had both an agressive cancer and a very high incidence of bc in my family so a statistically higher chance of ' some more breadt cancer' down the line. My thinking was, based on my situation:
Told no need for rads if did double mastectomies ( and I chose this with imidiate reconstruction)
Having no rads meant less time in hospital away from my two small kids.
Double mast. And recon meant better chance of symetry
using my own skin and fat meant less likely to have to review inplants and adjust every decade possibly etc.
I have mega loads of allergies to meds and compounds so was not keen to have inplants.
When I returned home from surgery, i would be bandaged up but when healed up would ' look' roughly what my little kids expected to find ' mum with 2 boobs and not returning for more opps.
Also, in my situation, having had issues with the ' good breast' year before involving a biopsy.. I was glad to be rid of it and welcome my 2 new ' safer' boobs courtesy of tummy fat and very skilled surgeons. So when i look in the mirror, I feel like I am looking at my breats, not one inplant and one different looking, hopefully safe' breast.
As the tissue for recon was all from me, I do feel quite natural and confortable with my ' new' all me breasts.
Good luck with it all and TRUST yourself, it is what YOU want and YOU feel ok doing that is what you are to do. There are no right or wrong. Just what gives you the most peace and least worry and that is different for all of us!
Be good to you. Best wishes. Hug.
Shiny
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just been diagnosed with a triple neg and so scared! How do you get past that?
cheers
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Kathseward: You do and you don't. You don't forget the seriousness of the diagnosis, but you are able to let the good things in too. I collapsed once into my husband's arms to tell him how scared I was. But I felt MUCH better after I had a treatment plan, and even better than that emotionally once I started chemo. My oncologist gave me Ativan for anxiety, but I only took it once a night to sleep. It was very good to have that in the beginning. I'm trying to use it less now.
It also helps to read from other triple negative survivors, and connect with as many as you can, online, and in person. I have read so many stories of women living and maintaining with much worse diagnoses than mine. Take a breath and focus on your next step. Get all the comfort you can from these boards. Hugs to you, and remember, you can turn the corner on the fear.
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Hi,
Thank you so much for answering. Right now I feel like Im paralysed with fear and I cant seem to get past it. I was told I had a good prognosis with 90% chance of non reoccurrence. I was a stage 2 with good margins and no lymph node involvement. I was also given avastin and I take it at night to sleep but I am due to start chemo soon and Im try so hard to be postitive. I think once my treatment plan is in place I will feel better as well. Did you just have chemo and radio or are u on Parp inhibitors as well?
cheers
Kath
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Kathseward: You are doing great in terms of prognosis. You can do this. For me it really helped to read the Chemo boards, what to expect, those starting in July/Aug, (or even June), etc. It was all about knowing what to expect. I am having chemo now. The surgery and rads come later. I am not on Parp inhibitors. Also, when you can, I would encourage you to fill out your details, (mine are shown below my posting - you can access them through your profile).
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Hello lilyp6,
I was very interested to read your post and I do wish you all the best as you go through chemotherapy. What interested me was that you are having just Carboplatin (paraplatin) and Taxol (paclitaxel). I was wondering whether the oncologists are now moving away from what used to be the standard chemotherapy drugs of epirubicin, doxorubicin and cyclophosomide, and using platins instead, or whether there was a special reason paraplatin was chosen for you.
I am over eleven years out since diagnosis of TNBC, am still active on the forum and on the thread I created in 2010 and where you are welcome to post. I was asking about the paraplatin as I like to keep up to date.
You might also like to post on Calling all TNs where you will get a lot of support and information.
Wishing you all the best.
Sylvia
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Hello Kathsward,
I just wanted to tell you not to be afraid. You can get through this. I was diagnosed with TNBC in June 2005 with a large tumour, but I got through all my treatment, have never had so far recurrence or spread and I am now over eleven years out.
You might like to join Calling all TNs or the thread I started, Calling all Triple Negative Breast Cancer Patients in the UK. You will get a lot of support on these threads as well as information.
Wishing you all the best.
Sylvia
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Sylvia: I'm so encouraged by your story. I can see that I need to update my profile. I am in week 7 of 12 for Carbo/Taxol. The Carbo comes every 3 weeks, but most weeks it's just Taxol. After that, I have 4 rounds of A/C, once every 3 weeks. It sounds like that's unusual, but I'm glad that I got something relatively mild to start with. I'll definitely check out the other threads as well.
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thanks Sylvia u have made such a difference! It's such a frightening thought. I have been given a 90% chance of non re occurance but the info that is on the net is terrible!!at times I'm absolutely frozen with fear and I hate that I am! I read of so many strong women on this site! Such warriors I am in awe. Hopefully I'll be better when chemo starts in a week! How did u get past that fear
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Hello Kathseward,
I was so glad that I was able to help a little. It is perfectly normal to feel afraid when you are first diagnosed, but this will get better as time goes by.
Once you get started on your chemotherapy treatment, you will be kept busy and you will get through the treatment. Why not come over and join the thread I started, Calling all triple negative breast cancer patients in the UK (we have women from all over the world), that has been going since September 2010. We shall be able to support you through your treatment. It would be helpful if you could let us know what chemotherapy drugs you are having. I am assuming you are having these before surgery. It would also be helpful if you could post the details of your diagnosis beneath your post (in your profile).
It is usual to put what kind of breast cancer you have, the size of the tumour, the stage, the grade and the receptor status.
I got through the fear by being informed, having one good cry, eventually accepting the breast cancer diagnosis and just getting on as calmly as I could with the treatment. You can do this.
Fond thoughts.
Sylvia xxxx
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Hello lilyp6
Thank you for posting a reply and I am so glad that my story has been able to encourage you. That is what the forum is all about. I want to reassure, motivate, comfort and support all those who find themselves on these threads having been diagnosed with breast cancer.
I do hope all will go well with the rest of your chemotherapy and am most interested in the fact that you are having carboplatin every three weeks to complement the Taxol that you have most weeks.
It would be nice to have you on the thread I started in September 2010 that is for everyone, although I started it to bring everything out of the dark ages with TNBC. It is Calling all triple negative breast cancer patients in the UK. You are most welcome to join.
Wishing you all the very best on your chemotherapy journey. Take it easy while you are doing this.
Fond thoughts.
Sylvia xxxx
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Just a respectful question: is there any chance of changing the title of this thread? I may be nuts, but the all caps CAN makes me think that my odds are actually very slim. I can't think of a better title, just wanted to throw this out there. Thanks!
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