New TNBC @35, lump pain, other questions

LuckyMich35

Hi all, my first post!

I'm 35 yo. I have found my lump in January 2020 because of pain, and was diagnosed in March. I have a 4.7 cm tumor (seemed to grow really fast from about 2 cm at first ultrasound 1.5 months ago), and I have at least 1 confirmed enlarged positive lymph node.

I am now waiting for CT and bone scans to see if I have metastasis. AC chemo starts next Friday.

1. Did anyone experience such a fast growing rate of the TNBC tumor? I mentioned it to the doctor, but he does not seem to believe the first ultrasound result was correct. However I seemed to feel the lump growing myself, so I believe the results.

2. I have such a painful tumor, and I wonder what it means in terms of prognosis. Did anyone with painful tumors have a good response to chemo?

3. How possible is it for me to already have metastasis? Hope to hear from those first diagnosed with large tumors and positive nodes. This is the most scary part for me at the moment.

santabarbarian

My tumor came on fast and hot, almost overnight. There was a red spot like mastitis that I noticed getting out of the shower, and when I poked it I felt the lump. 3.8 cm multi focal tumor. It grew fast and I had a 3 cm node as well. Not exactly painful but a bit tender.

I had a fabulous response to chemo. The counter-intuitive part of TNBC is, the voracious fast-growth cancers are more vulnerable to chemo. There is great hope for you based on this.

You want to be aggressive with treatment and knock it out in round one. If you can get rid of it with chemo, you have 90% odds of being well and not hearing from it ever again!! The silver lining of TNBC!! That is my great wish for you. If you look at some other threads you will see a lot of us with similar presentations to yours who got very lucky with a fabulous chemo response. Many of us are quite well today.

There are complimentary therapies and standard therapies. My approach was to do all of it. Exercise and diet can really help with the side effects of chemo and possibly response to chemo as well. Fresh produce has very good phyto-nutrients that help the immune system against cancer. Fasting briefly before each chemo helped me immensely.... to avoid side effects like constipation (the worst part for me). I was terrified of what it would be like but though I was very very exhausted by the end, it as honestly not nearly as awful as my fears. A trial-- but not too much to handle nor to prevent joyful times from occurring.

Im guessing here, but a more-painful tumor may be located near a nerve? Like I said, mine was mildly painful.

It's possible to have a metastasis at ANY stage, even a tiny stage 1 tumor. They just need to know either way. I was scanned too. Pretty standard w TNBC.

I hope for the best for you and send you a big hug.

LuckyMich35

I did too have a red spot under the tumour! The spot later turned purple and then went away. I had this happening at least two times. The red spots were also warmer to the touch. I wonder if this is how the cancer grew.... Interesting! The only thing that somewhat alleviates the pain is Naproxen 500. I hope me taking it before chemo won't affect the tumor response to chemo...I can't wait to start chemo (never knew I would even say that!) and my hopes are that chemo will start shrinking the cancer asap and the pain will go away.

My doctor seems to be pulling all guns to this first chemo. How long do you recommend I fast before chemo? I did start exercising and better diet.

santabarbarian

You can look up the "Fasting mimicking diet." Developed by Dr Valter Longo at USC. If you are in otherwise normal health it is basically quite benign and easy.... a very low cal 5 day diet. Chemo day is day 3 of the 5.

Fasting not only helps with SEs, butis thought to boost the chemo response (it does in rats, anyway) and is being tested in a clinical trial w people right now. Because a fast tells your healthy cells to slow down and go quiet, so the chemo then preferentially uptakes in the cancer cells, not the healthy cells. I have NOT ONE ongoing SE. No neuropathy, never lost a nail, etc. Maybe luck, or maybe the stuff I did helped my results.

Day 1, 1200 calories; day 2-5, 800 calories. Low protein, NO sugar or junk.... mostly veggies and a tiny bit of deep sea fish or an egg or some nuts for protein. Healthy fats ok. Basically, three ~250- 300-calorie mini meals is what I did. (like one egg, half an avocado and salsa would be one meal). Or 1/4 C almionds + celery and carrot sticks. Or bone broth and some sauteed spinach. That kind of thing. If you do a lot of leafy green salads it can be decently filling. I did not have any trouble doing it. Others do a full water fast for 3 days. with chemo the middle day too. I preferred to be able to eat lightly and do it longer. Either way works well. Some AC/T haave weekly T and that makes lengthy fasting hard but I had chemo buddies who did it for 24-36 hours of water fast for the weekly T and they experienced lower SEs.

Re redness/heat... This is not strictly scientific but more of a hunch-- I think the red spot (mine was hot too) was my immune system TRYING to do something to get rid of that cancer. I know that a good immune response with TILs (tumor infiltrating Lymphocytes) is supposed to correlate with a better response to treatment. So lets' hope that what those red/hot spots signal!!!

BTW I too am lucky. I have known it all my life. (Like if there is a raffle, I will win it!) So I LOVE your user name. You can be lucky too!!! But definitely assist your own luck with good health practices.

If you are interested in integrative care, my story is in Member's Stories on TNBC forum. Page 6 I think. There are a lot of very small nudges you can give your odds. I think 5 or 6 2% nudges can add up. The doctor I consulted with is Dr Keith Block in Chicago. that's the program I followed. He's a brilliant integrative Oncologist. he has a book, Life Over Cancer. He will do a very comprehensive 4 part consult for about $1800 (2018 price). He sees people from all over the country/world and his outcomes are really good. You can do the consult remotely so not a COVID issue.

I AM PULLING FOR YOU!

"Calling all TNs" is another TNBC thread with a lot of active members who have beat this disease.

Moderators

Welcome, LuckyMich35! We're so sorry you find yourself here, but we're glad you've joined our community, and hope this can be a place of support for you. As you can tell from the responses you've already gotten, this is a helpful, welcoming place, and you are not alone!

The Mods

santabarbarian

PS you might want to ask about Carboplatin, as it is very good against basal-like TNBC. Basal and basal-like TNBC cancers are usually fast growing and high grade.

I had taxotere/ carboplatin, which is a normal chemo but not totally typical for TNBC, more used with Her2+ (TCHP chemo). Most people seem to get AC/T. In any event the great thing about having chemo first is that they can monitor the tumor and see that the chemo is working, and change it if not. There are options they can switch to.

You are young-- and it has to suck not to have too many peers with experience in the world of cancer. There are many threads for younger people here and they can give you support too.

KSteve

LuckyMich35 - Good morning! So sorry to see your post. I was considered young (44) when I was diagnosed with a large TNBC tumor, along with positive lymph nodes. I wanted to reach out quickly to let you know that I'm doing great as I approach 10 years from diagnosis. TNBC is a fast growing, aggressive cancer. My doctors all said that it responds great to chemo because of this. I had a pathological complete response to the chemo, meaning there were no cancer cells in my breast tissue or lymph nodes after chemo. I highly recommend you hop onto the active thread "Calling all TNs". Lots of great, supportive people that are in various stages of treatment and also people like me who are all done.

You can do this, one day at a time!

Hugs,

Kathy

NinjaMeow

Hi there-responding quickly as I head to work. I was diagnosed at 40 with 2 very small kids..... fast growing tumor and at initial biopsy they were concerned that I had mets bc my lymph nodes were so swollen. It turned out to be just my body fighting the tumor but the whole thing is completely nerve racking. I did treatment and have moved forward day by day and now 6 years out. The early part is very difficult trying to get your brain wrapped around cancer and TNBC.

santabarbarian

LuckyMich, thinking of you and hoping things are going well for you. Sending you energy and strength.

dmh2

hi Lucky. I wanted to respond specifically about the pain factor. I had an aggressive, fast growing tumor in my armpit that was tender to the touch when I was diagnosed in October of last year. The tumor pain intensified greatly as I went through chemotherapy and I ended up on morphine for a couple of months to manage it (along with a host of other drugs). Unfortunately, the tumor did not really respond to treatment and I cut chemo short to have it surgically removed. I think it’s a lot harder to deal with chronic pain as one goes through the treatment process, so I hope this is not the case for you. Having said that, when I woke from surgery and the tumor was gone, I felt like a new person!! I was able to manage the incision pain with Tylenol and have not taken anything more potent since. I keep my huge ziplock bag of meds to remind me where I was just a few months ago. While I experienced a good deal of depression from the pain and insomnia, my care team did everything they could to find the right combo of meds that would keep me comfortable. My best advice is to communicate often if/when the medication isn’t properly managing your pain and remember that as bad as it may get, it is only a temporary situation! 🙂 —Diane