Just diagnosed with triple negative breast cancer
Hi guys! So I was diagnosed with breast cancer in my lymph nodes on February 19th. With further testing they did find a tumor in my breast and I have a biopsy scheduled for next Monday. It is measuring 5cm. Isn’t that kind of big for not showing up on a mammogram? The cancer in my lymph nodes is triple negative.
I feel like things should be moving faster. But at the same time I don’t know if I’m ready for all of this? What is it that will be happening? My surgeon is kind of the point person right now. He said I have to have chemo before surgery. What kind of chemo? Is it a pill? Is it an IV? Do I need to take FMLA from work? I’m a teacher, I teach first grad andmy job requires a lot of energy.
I meet with the oncologist next Monday as well and I do know I’ll have a clearer picture. What has y’all’s journey been?
One more question, at times I get so tired I have to take a nap. I have not started any treatments or anything. Do you think this is my body fighting or stress? Why do I get these bouts of exhaustion?
Thanks guys!
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((Hugs)) Not triple negative but triple positive. If you have dense breasts, it might have been difficult for the mammogram to pick up a tumor of that size.
You will be having IV chemo. You will probably be on a fairly aggressive regimen, like Adriamycin/Cytoxin + Taxol or Taxotere/Carboplatin. Whether or not you need to take FLMA depends on you. I taught through chemo (albeit at a university), but my classes only meet twice a week.
I have no idea why you're napping. Lots of people nap who don't have cancer.
I'm six years out, and my life is pretty normal now. Just think of treatment as a detour on your journey through life.
I'm sure a triple negative person will stop by and provide more information about your kind of cancer.
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Hi Mrs. I'm sorry you've found yourself here. There are a lot of us with triple negative, though only 10-20% of breast cancer cases are TNBC. Yes, 5cm is a fairly large tumor, but dense breasts can hide a lot. You'll meet with your medical oncologist (MO) and that's the person who will direct your chemo care. Your chemo will be by infusion. It's doable for most people, not like what you see on tv. A lot of us never have substantial nausea. There are a variety of different things they will give you so you don't feel terrible. You may be on an infusion every 2 weeks or every 3. If you can schedule it for later in the week, you'll have weekend recovery before going back to school.
As to your naps, it could be you're tired from stress, or it could be from having cancer. I was more tired than usual before my diagnosis 2 years ago. Whether or not you can work through, you won't really know until you try. A lot of people work through chemo, but some find it isn't something they want to do.
There is a lot of info here and I hope you will go ahead and ask any questions you have. Medical questions are for your medical team. However, we can fill in a lot of gaps for you.
All my best, and hugs to you.
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Thanks ladies! There’s so much to know
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Hello Mrsammieb,
I see you are from Georgia also, I'm in Savannah. Sounds like we are in a similar situation, I too was diagnosed with TNBC on February 11. My large 6cm tumor did not show up in Mammogram, I had around 5 nodes that were swollen/enlarged and that is what got me to having the ultrasound. Next was biopsy, breast surgeon, oncologist, CT scan, bone scan, echocardiogram and tomorrow MRI. I had DCIS 8 years ago, so I was able to get in with my prior breast surgeon who is awesome and thorough. I start chemo on March 10, ready to get this started, the tumor is pressing on nerves and also causing swelling in my arm. I will be on AC/Taxol as well. Once things shrink down, I'll have a double Mastectomy. Not sure what else!
If you get tired, go ahead and nap. Listen to your body, the stress of all this can wear you out. Get ready for the chemo, clean up your diet, drink plenty of water, pack a special bag with comforts you will need during infusion.
Lots of wonderful people here to help!
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Mrsammieb, sorry to hear of your diagnosis.
Given the size of the tumor & positive lymph node I would definitely mention the fatigue to the oncologist & consider requesting further scans to rule out any other spread. It might be nothing, it might be something, but better to get a clear picture before you start treatments. & I think with difficulty imaging of your tumors I'd ask at least for a bilateral breast MRI (but honestly, I'd probably want a chest & abdomen CT & not just a breast MRI)
Generally triple negatives get chemo first, then surgery, then radiation. Your chemo will be IV & will be anywhere from 8 - 16 weeks (as mentioned above, it is pretty much standard to do the AC+T protocol; the only difference is whether you do dose dense which is 8 weeks or the regular which is 16).. Some people work through chemo but if you can, I would honestly recommend to take the time off. The chemo for triple negative will make you lose all your hair. Then surgery (& whatever you decide about reconstruction or going flat). It's all a bit of a slog but amazing what you get used to. There is lots of support & information here. We're here for you. Best wishes
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Wow! Ok. I’m going to tackle this. In my head, since I’m clearly at the very start, I think I’ll just have a quick in and out. Start next school year like nothing has happened. But now I see this may take a little more than I was expecting.
I had the bilateral MRI and that is what found the lump 5cm. I had a PET scan and that said the cancer has not spread past my lymph nodes. So I feel like I have a clear picture of what is inside of me.
You know, this actually sucks. I don’t want to lose my hair. I don’t want people to look at me all sad. I don’t want to ruin my daughter’s senior year or make her think she needs to choose a school so she can check on me. I hate that my husband has to deal with this. He’s such a great guy.
These feelings are a lot. I just want to get it going so I can get it gone. Sorry to dump on y’all.
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Mrsammieb,
The one thing I want to add about working during chemo is that your WBC (white blood cell count and ANC- absolute neutrophil count) will likely drop, so you need to be careful about getting an infection. I had to go to the ER during chemo because I developed a low grade fever and my WBC had dropped to a dangerously low level. Many women I met during chemo also had issues with infections, so please keep that in mind when deciding whether to work through the IV chemo (AC-T).
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Mrsammieb: don’t feel like you’re dumping on anyone. We are all here because we’ve been there. Even though that sounds like some kind of corny slogan it’s true. Don’t hesitate to reach out with questions or if you just need a safe place to vent. TN is an overwhelming diagnosis to get. We are all here for you.
And I totally understand. I was also so upset about losing my hair, but I really do mean this. It’s not fun, but it’s not as bad as you fear. And I get so many compliments on my wig. People will only know if you tell them.
Please don’t hesitate to reach out. It looks like we have a growing Georgia TN group. I’m happy to be there for you any time.
Kristen0 -
Yogi, I was just reading through and see you’re starting chemo tomorrow. Just wanted you to know you’ll be in my thoughts. Let us know how it goes.
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I concur with many of the responses here but the one thing that stuck me about your info was the bouts of exhaustion.... in the months before I was diagnosed I was exhausted all of the time then the stress of the diagnosis I napped a LOT! Keep us updated
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Chemo went ok, the nurses were outstanding as I was asking a lot of questions. I was there for 3 hours. They started me off with steroid and other stuff before I got the actual chemo drugs. I started feeling drowsy halfway through, probably the anti nausea medicine. Came home and took a two hour nap. I feel ok right now. Pounding down the water.
Don't feel bad to think your husband and family have to deal with this, let them help, they will be blessed for it. You didn't ask for this diagnosis, none of us did. You will go through all kinds of emotions, this site is great for venting, we all know how you feel, we really do!
I was thinking about how I was doing strenuous hikes with my son in Colorado back in September, then by Christmas I was winded easily going up 6 flights of stairs at parking garage at work. Now I have to pace myself, can't walk too far and take elevator. I'll get my stamina back eventually, we all need to take care of ourselves and preserve energy so the body can heal. Do mini walks.
Take care and let us know how things are going.
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Mrsammieb, I was super worried about my husband and kids too but what I figured out is that my attitude set the tone for the house and they followed my lead. My husband, kids and I managed everything really well. We just took things day by day. Good luck!
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Hi there, I was diagnosed with triple negative in December. It's been a wild ride. The ultrasound said the tumor was .8 cm, the MRI said it was between 2 and 6 cm. The final mx showed IDC of 1.1 and 5 + cm of DCIS and no lymph nodes. I do not recommend googling triple negative. It is scary. There are many subtypes of it. Mine had apocrine features. Study your biopsy report to see about yours. It's been a month since the MX with tissue expanders (not comfy) and i started weekly CMF chemo yesterday. I have to do it for six months. MO said I won't lose hair this way. I hear you about not losing hair for your kids. Have you looked into cold capping?
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Hugs! I'm back...I was on this support site in 2002, it helped me immensely .I too am TNBC... diagnosed in February 2021... starting chemo this week. I'm in Florida, but from Boston area.
I had BC in 2002. all the treatments and have been fine since. This is a totally different BC... I work at a school, not a teacher but a support role. I don't think I should be around children because of the Virus. All your feelings are so normal, and you will get through. I'm struggling again because my last "time" was a difficult time in my life and all those memories are coming back. Has anyone been on a regimen of Taxol and Carboplatin? Whoever said not to google TNBC is right, you don't get much positive information. Blessings to all, and just stay strong and take care of yourself.. Last time my children were young and I tried to hide everything from them... they are older and it's easier in that respect....
Rie
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Hi Mrsammieb, my bilateral MRI confirmed a 3.3 cm tumor which I was surprised about since my initial mammo and ultrasound showed nothing. However, the 3-D mammo done my new facility revealed the tumor as well. That dx could still change after surgery as some of the ladies said.
I am just as new as you, meeting with my first Onco next week. One thing that helped me with exhaustion was stepping up my nutrition. I was always tired in the last year or two and my body temperature always low; I would be cranking up the thermostat to 82, summer or winter. Now I can't stand anything over 73 degrees.
The hair thing can be traumatic but my hair got messed up years ago due to some GI treatments - a lot fell out then grew back uneven curly & frizzy, so I'm not so attached to it even though it took years to improve somewhat. It would be nice if the chemo made it straight again; I am hoping so I won't have to go to the salon anymore to have it straightened. I also hope the color doesn't change; There are substantial greys but they are beige-blonde, which I am happy with.
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