Share with others who have ER-/PR-/HER2- breast cancer.
Posted on: Aug 23, 2019 12:32AM
I’ve recently been diagnosed with triple negative breast cancer on August 9, 2019. I start chemo next week and I’m scared. I’m stage 3 and it’s in my lymph nodes too but good news is it hasn’t spread. I’m not scared to lose my hair but I do have questions about when receiving chemo through port, does it hurt? I know I sound like a big chicken and I guess I am but I’m curious. I got on the internet tonight and found this so it actually help me with knowing I’m not alone when I’ve seen all these people on here and a lot worse off than I am. I pray for all of you because my mind never has stopped since that day. My family has been tore apart emotionally and that’s hard. Any info from a more experienced person hereLog in to post a reply
Posts 61 - 90 (92 total)
Feb 6, 2020 10:26PM santabarbarian wrote:
No I do not. There is a TNBC thread in the Stage 4 forum where you might find more info on that.
Feb 6, 2020 11:02PM Sgg0340 wrote:
I agree with Santanar that to start aggressive right from the start and I know the devastated feeling. That will get better in time but try to be positive and point out every positive point you find. Attitude is so much during this journey that you all are about to start and know that your not alone and I will be praying for you and your family. Please keep us posted and keep those kids busy if possible.
Feb 7, 2020 12:03AM Moderators wrote:
We're so sorry to hear about your daughter-in-law, Bonesios. We know it can be a devastating diagnosis. Hopefully her PET scan is more conclusive, and once you have the results, she and her medical team can come up with an aggressive plan of attack. Please keep us posted on what you find out from the PET scan, we're here for you.
Feb 13, 2020 08:21AM motu53 wrote:
My wife 61 was diagnosed with TNBC ( Rt) in June 2019...after NACT + Mastectomy + RT ,she is now on oral Capecitabine 1500mg twice daily since last 03 days for two weeks on & one week off for 6 months since she had Residual Tumour upto 15% in Mastectomy...Sentinel LNs ( 04) were Negative & hence Axillary Clearance was not done..She also takes CBD Oil since the last 06 months which greatly reduced Chemo side effects & maintained her Appetite well.....Other than loss of weight, she is doing fairly well..Iam looking for High Dose Vitamin C IV & our Oncologists have no issues about it...only issue is there are hardly any Hospitals giving IV Vit C ..We are based in Bangalore, India.
Feb 13, 2020 10:42AM santabarbarian wrote:
If you can find a naturopathic physician they can often give vitamin IVs. There is a test they do first to make sure you can metabolize a high dose. I would bet your oncologists could order a high dose C IV to be made up and infused; maybe you can ask them?
Feb 13, 2020 10:37PM motu53 wrote:
Thank You Santabarbarian...Yes..we have done all tests including G6PD as per Riordian Clinic Protocol...We are zeroing on Integrative Onco Clinics to give IV Vit C
Our Oncologists dont believe much in Integrative Therapy.... They only believe in hard core Chemo Drugs ..Ducking Custards ..Sorry
Feb 17, 2020 12:13AM bonesios wrote:
PET scan showed no bone involvement, so we are much relieved. It didn;t even show that spot on her breastbone that the MRI showed. They are still thinking of a biopsy there, but chemo should start week after next. once a week for 8 weeks to begin with. Very aggressive approach with 5 different chemo drugs. We are still scared, but a little more hopeful now that we are pretty sure it's not in the bones.
Feb 17, 2020 01:33AM santabarbarian wrote:
good news re bone scan!
Feb 17, 2020 08:58AM Loumw wrote:
I have recently been diagnosed with triple negative breast cancer on the 28th jan. I have had a ct scan that has come back clear, but no other scans. The dr is doing a lumpectomy on Thursday, but not had any other treatment before this. I pray the margins and lymph nodes come back clear and they manage to get it all out on Thursday. I know I have a tough road ahead with chemotherapy and radiotherapy, but just need some good news from this operation for me to cling on to. I am 39 years old with a 10yr old and a 14yr old.
Where abouts is your daughter from? I live in the uk. Hope she is ok and trying to stay positive.
Feb 17, 2020 04:20PM Moderators wrote:
Welcome to the BCO community. We are so glad that you reached out to our members for support and to share experiences. You can always send private messages to specific members whom you are hoping to connect with. Sometimes that is easier than reaching other individuals on the boards. Let us know how we can be a help to you as you navigate your way around. We are here to be of assistance.
Feb 18, 2020 12:45AM TexKat wrote:
Hello, Loumw! I’m glad you found this place. I was diagnosed with triple negative breast cancer at the end of last July. I had 4 months of chemo, then a lumpectomy and lymph node dissection in December. All margins were clear, and all signs look very positive now! I am currently in the midst of radiotherapy.
I will not tell you this will be easy, but I am feeling great now and all my doctors are quite pleased.
Chemo kept me exhausted and weak. The schedule of tests and all the questions and unknowns at the beginning (right about where you are now) were confusing and frustrating and scary. The lumpectomy was actually not too bad. Removal of lymph nodes was worse, they removed 25 of them and recovery from that was a bit harder. I’ve completed three weeks of radiation, and it has not been bad.
If you find a thread for people starting chemo the same month you do, join it! Being able to follow along and commiserate and compare notes with others at my same stage of treatment, regardless of their diagnosis, was very helpful to me.
Here’s wishing you a successful journey. People here have been very supportive and helpful to me, and I know that they will offer you that same friendship!
Feb 18, 2020 11:09AM Loumw wrote:
Thankyou for your reply. I’m so scared. I’m only 39 years old and have 2 children age 9 and 14. Wish this was all just a dream
I’m waiting to have a lumpectomy on Thursday with lymph node removal then will have to wait a couple of week for those results.
I feel like all I do is wait around hoping things will be ok.
Feb 18, 2020 12:15PM santabarbarian wrote:
You will feel better with a plan to execute. Chemo is doable. No fun, but not nearly as awful as I had anticipated it. Read up on fasting mimicking diet prior to chemo-- which can definitely help with side effects. Keep up the exercise and walking which really helps SEs too. Jump on "Calling All TNs" which is a more active thread
Feb 19, 2020 08:44AM Sgg0340 wrote:
hey TexKat I start radiation in around two weeks. I’m still recovering from double mastectomy and total lymph node dissection on right arm. It’s not been as bad as I thought but I’m glad to see radiation hasn’t been so rough for u too. Hopefully it won’t be for me either. I hope all is well with you and will talk to you soon
Feb 19, 2020 10:45PM bonesios wrote:
My daughter-in-law lives in Northern Virginia. She will be starting chemo soon. After aggressive treatment, she will have mastectomy. hoping for success. I need to find out about "fasting mimicking diet" mentioned above. Thanks for all the info.
Feb 23, 2020 06:06PM Ranny wrote:
This is my first post so I'm not sure where to start. I was diagnosed with triple negative breast cancer on my left breast on December 11th the 2019. I finally got all of my tests done--that is the MRI and PET scan and found out Friday that my MRI now shows a spot in my right breast that did not appear on my mammogram so I'm in the process of getting authorization to do a biopsy of the right breast now. Fortunately my bracha test was negative so oncologist feels that a moderate round of chemo plus a lumpectomy plus radiation would be what he would recommend. I will be going back to him after I get the pathology report of my right breast. I guess my concern here is do I except what this oncologist is saying about chemo or do I get another opinion. I have been told with triple-negative that you should get chemo, but, no surprise, I dread it with a passion.
Feb 23, 2020 06:24PM Moderators wrote:
Hi Ranny, and sorry you've had to join this club. We always recommend a second opinion, so you can feel more comfortable about your decision. Oncologist expect that. Here is some information about triple negative that you may find helpful: Triple-Negative Breast Cancer: Overview, Treatment, and More
Please keep us posted on what you decide.
Mar 11, 2020 12:45AM santabarbarian wrote:
Ranny, We all understand...nobody wants to do chemo.... but at least TNBC does respond very well to chemo. I was scared to have to feel lousy, and while chemo was not a picnic, it was not nearly as bad as I was fearing. My SEs were tolerable. I felt weird, more than 'sick,' and bounced back to normal between chemos until the very end when I was pretty anemic. The side effects were pretty much the same on all 6 chemos.
Sorry you are here among us, but welcome-- it's a great forum and you will get a lot of support and info here.
Mar 20, 2020 03:07AM - edited Mar 20, 2020 03:09AM by miss302
I had similar diagnosis to your daughter in law and others on this thread, and I am about to celebrate 13 years as a survivor of grade 3 stage 3B triple negative breast cancer! I just turned 40 in January. Chemo is very effective on TNBC so that is a huge bonus.
Praying for you and your family.
Mar 27, 2020 07:10PM - edited Mar 27, 2020 07:13PM by hunter1996
Hello, I was diagnosed with triple negative invasion ductal carcinoma Jan 28th 2020. I had a lumpectomy March 5th 2020. 2 lymph nodes was checked and was negative. I am now at stage 1B and tumor grade 3. I do not have the bract gene. I elected not do chemo 3 1/2 months prior to surgery: ACT! They are now insisting I need chemo and radiation. I turned 62 on Feb 2nd. I am very healthy and physically active, only medication is for glaucoma. I have been told I need aggressive treatment due to the triple negative. I am having a hard time accepting this. I will go April 6 to speak with the medical oncologist again, If i refuse it, then I will see the radiation oncologist again. I asked the surgeon if I could wait out 6 months-NO, 3 months -NO. She said need to start 4-6 wks after surgery. In Feb when I spoke with the radiation oncologist he said the radiation WILL leave scar tissue on my lung and heart and possibly break a rib.
I would love some input . My 2 sons think I need to do this. I know my body. I have no fear of death, its the treatmeants that scare me to death.
Mar 27, 2020 07:44PM santabarbarian wrote:
I am sorry for your diagnosis! You are at the right place for information and support.
I was scared of chemo itself, and also the possible debilities I might be left with *after* chemo. On both counts, I have had good luck. A lot of us manage very well during chemo. Many women WORK during chemo. The management of nausea, etc, is much better these days. And there are things you can do (such as semi fasting, "fasting mimicking" before chemo, exercise, etc) that dial the side effects way down. Your own health practices and underlying conditions make your situation unique but at least know that chemo might not be nearly as bad as you are imagining. In my case, what I experienced was 20% of what I imagined.
Chemo is no picnic but it is very doable. For me the worst part was the cumulative anemia/fatigue and the mental tiredness (too tired to search for a word). I managed my side effects very well, other than that. Never threw up and even skipped the anti nausea drugs my last 3 chemos. I had 6 chemos total, and other than being very sleepy for day 3/4 after chemo, I felt highly decent until after chemo #5 when it really zonked me out... But by then I could see the finish line and just pushed myself across it.
The chemo I did was quite tolerable to me. Taxotere and Carboplatin. That and AC/T seem the most commonly offered to TNBCs.
The ultimate decision is yours, as you will experience the consequences. If you are not treated you might recur and if that happens you might die. If you are treated your odds of recurrence and death go down. TNBC is the most recurrent and most lethal form of BC, so that's why most of us get it
Mar 28, 2020 12:14PM anotherNYCGirl wrote:
Sorry that you are in this boat with us, - but welcome to a wonderful group! These posters have helped me get through everything, - surgeries, chemo, fears, and even my daughter's high risk pregnancy!
I agree with santabarb, - do the chemo. At least give it a try. I wanted to postpone mine, too, but onc said no, too risky. My daughter's wedding was days after my second round of ACT. With some tweaks in scheduling, I was there with wig and makeup (never looked better! ;) and I was up and dancing.
Chemo was not as horrible as I feared. Took my anti nausea meds, ate carefully, and muddled through it. I have my fingers crossed that it did what it needed to do.
Dont rule it out. You dont want to have regrets!
Mar 28, 2020 11:21PM MountainMia wrote:
Hunter, your stats sound much like mine, other than I was 58 when diagnosed in Feb 2019. It is, ultimately, your decision, so I'm glad you're asking for more info. YES, MOs prescribe chemo for TNBC for a reason, lots of reasons! TNBC responds well to chemo; TNBC has a high rate of recurrence, and chemo helps reduce that risk substantially. You could try the Predict website to plug in your stats and see how much difference it would make for the average woman with your circumstances. Remember that mastectomy is considered equal to lumpectomy plus radiation, they are both "surgery." https://breast.predict.nhs.uk/tool Also remember that these are averages and everyone is different, but it will give you some sense of the difference between using or not using chemo.
I did chemo a little differently than many people. My MO prescribed 4 rounds of Taxotere and Cytoxan, but I reacted to the Taxotere multiple times. So he switched it to 4 rounds of Adriamycin and Cytoxan, or the AC part of AC-T. I didn't use the Taxol. I had very little trouble with the chemo SE, hardly any nausea. The worst was the fatigue that actually hit me hardest after I was done with my chemo. And of course I lost my hair, which isn't great, but it's just part of the process.
Good luck making this decision.
Apr 1, 2020 04:29PM hunter1996 wrote:
Thank you all for the insights concerning my decision. I talked with both of my sons this morning, they both agree I 'need to do this, and I can do this.' I know my whole life I have been able to stay mentally and physically strong. With this I cannot get to the "Mental Strength. However, now I am seeing a pin light in my brain. I want to thank you all for letting me seeing at least a little light. I am scheduled April 6th to talk with the MO again. I am praying to get that strength to fight this mentally. MOUNTAIN MOMA HERE TOO!
May 21, 2020 09:11PM Mistiferlyn wrote:
It's so nice to have this site with people who totally get it. I was wondering of anyone that's survived had lymphovascular invasion. My initial biopsy showed none but after my mastectomy, which was march 24th, it showed it. I had clear margins, negative lymph nodes and tumor went from 2.5 cm to 0.6 mm. I have been trying not to focus on a reaccurance or metastasis but it's hard. My PET scan prior was clean but I know that doesn't predict the future. I have a friend who passed a year ago at age 45 from TNBC that metastasized to her lungs and brain so I'm very nervous. Thank you all, you are all amazing survivors..and to you just starting best of luck.
Jun 30, 2020 10:20AM StaceyCW924 wrote:
Hello, all! This is my first post. I'm meeting with the surgeon tomorrow to make decisions about surgery which I hope to have as soon as possible. I was diagnosed with triple negative breast cancer in January and have just completed 5 months of chemotherapy. Chemo wasn't quite as bad as I feared - mostly just low red and white blood cell counts. My options range from lumpectomy to double mastectomy. Any thoughts? I'm 60 years old, post-menopausal. I don't have the BRCA genes but I do have a genetic anomaly of unknown significance - so not much info there! Mostly, I'm more concerned with preventing recurrence and extending my life expectancy than breast conservation. I appreciate any info or advice anyone can share. Thanks!
Jun 30, 2020 04:40PM santabarbarian wrote:
Did you get a MRI post chemo? Any tumor left in there?
Jul 6, 2020 10:52AM StaceyCW924 wrote:
Santabarbarian (not sure if you were responding to my post, but I'll answer anyway!),
I didn't get MRI, but I got an ultrasound after chemo. My oncologist told me the tumor appears larger, but the surgeon said the lymph nodes upon examination seem much smaller. He thinks the size reflected in ultrasound may be dead cells, but he won't know until he gets in there. I've opted for a double mastectomy, given my genetic anomaly. I don't want to worry about recurrence every day that I feel a little pain in my breasts (which I've felt in both, although no cancer detected in right breast).