Calling all TNs

Jennifer522

I assume with staging, it's the pathological that really matters. And that isn't done until surgery.

My US/MRI showed tumor 2.6 (US) and 3.1 (MRI) cm and mildly prominent nodes. But AC shrunk the tumor under 1 cm on US re-check. Don't know yet what Taxol is doing. And really don't know nodes yet until node dissection during surgery.

VL22

Jsan11 - I was diagnosed with multi focal - two small ER+HER2- tumors in right breast. During lumpectomy, a third 1 cm tumor was found “hiding" behind one of the other tumors. This was the bad guy TN tumor

VL22

Thanks Greenae- my stage stayed at 1b. Myhusband was perplexed as to why I would even look at, but you ladies get the need for all information. I agree with him, that it can be “unhealthy “ but it is what it is.

A4ggy

I was diagnosed on Sept. 7th, so similar timeline as you. Stage 2A. I began chemo on Sept. 28 and finished AC & T last week. I am waiting for surgery now and it's January 29th. I didn't have any other scans since diagnosis. They can't feel anything anymore, so maybe that is why? I am being treated at Mass General Hospital in Boston, so I do believe in my doctors, but find that I second guess everything and give myself about 50 breast exams a day. My mind is getting the best of me. I just pray that my tumor is totally dead and no tiny cells are still alive. They do believe my lymph nodes are clear and I had multiple MRIS, CT scans, bone scans and ultrasounds, so praying they are still clear. This is hard. I'm finding it hard to focus day by day. I'm anxious for surgery....

A4ggy

Jennifer522...I was diagnosed on Sept. 7th, so similar timeline as you. Stage 2A. I began chemo on Sept. 28 and finished AC & T last week. I am waiting for surgery now and it's January 29th. I didn't have any other scans since diagnosis. They can't feel anything anymore, so maybe that is why? I am being treated at Mass General Hospital in Boston, so I do believe in my doctors, but find that I second guess everything and give myself about 50 breast exams a day. My mind is getting the best of me. I just pray that my tumor is totally dead and no tiny cells are still alive. They do believe my lymph nodes are clear and I had multiple MRIS, CT scans, bone scans and ultrasounds, so praying they are still clear. This is hard. I'm finding it hard to focus day by day. I'm anxious for surgery....

Flynn

Paula, congratulations!! So happy for you!

Cort, welcome to the thread, tho sorry that you have to deal with this. Sounds like you’ve gotten good advice from other members already. Please keep up posted!

Jsan11, also welcome to you. My tumor was larger than yours and my lymph nodes were clear. I did neoadjuvant chemo. I actually did an investigative trial first, then AC, then Taxol & Carboplatin. We went with standard care plus additional treatment because I had a really big tumor. I just wanted to be as aggressive as possible and my MO felt that I was healthy enough to withstand a tough protocol. Hopefully your medical team can help you decipher the best path for you. Please let us know what you decide!

aterry

I had my first mammo and ultra sound after completion of all treatment. (Radiation concluded in early July.) I got good results. There was no evidence of a recurrence so I'm relieved about that. The radiologist said my next imaging would be in 12 months. Is that imaging cycle what others have experienced? I'd thought they might do imaging every 6 months for the first 18 months post treatment since I've read that is the time period when recurrence is most likely.

greenae

hi aterry

I had once a year til they found a little area of concern. It’s probably because I had a reduction/lift in my healthy right. Now I am every 6 months for two years, to closely monitor the area in question. I staggered my 6 month follow ups with BS and MO so that I get a “good feel” every 3 months. Lol. So far, so good. Stay Healthy!

Arlene.

jenjenl

meow - I had that happen to me and it was disovable stiches. One popped and the other dissolved.

Jsan11

VL22 - Thank you for the reply. I'm sorry to hear they had found another one when they went in but also glad they found it and didn't leave it lingering behind! How well did you tolerate having the "A" drug? That's the one that has me hesitant to do chemo before surgery.

aterry - Did you have chemo before or after your lumpectomy? What size did your tumor measure when they removed it?

Flynn - Did you tolerate the A drug well? That's the one I'm concerned with. I'm assuming the recommended it neoadjuvant because of the tumor size?

As an update on the last few days for me: I ended up not needing a biopsy on a second spot found from MRI. They weren't even able to find it to biopsy it and they said based on the MRI, it never appeared anything that they would normally check. They were only doing it to leave no stone un-turned but then when tried to find it, it wasn't there.

Also, my genetic tests came back and I am Negative for the BRCA genes As well as all of the genes I was tested for (in total 34). So I still have the option of the Lumpectomy or Mastectomy. I am 99% sure I want the Lumpectomy and feel like there is less risk by doing chemo after surgery so if the lymph nodes are clear, I should not need the A drug and only the T&C. But then this is where I get all stressed out again.......trying to make the decision. I have a few more questions to ask my surgeon before I can definitively say ok.

Jsan11

I have one other question that I can't seem to understand. The MO tried to explain it but I was too overwhelmed by then with the flood of information that day. My IHC Hormone Receptor tests say:

ER: Positive 1%, PgR: Negative 0%, HER2 Negative 1+ and Ki67: High 59%

Now the ER showed a very low positive, but it clearly says positive. But the MO said they treat it as negative because it's so low. Has anyone else run into this or understand this? It's whats causing me to be deemed Triple Negative and thus why chemo came into play for my treatment plan.

LoveMyVizsla

Jsan, I think that’s what they call “functionally TN”. I had adjuvant ACT. A was easier for me than T.

ATerry, I have a right side mammogram every six months, and both sides yearly. I also have an MRI yearly because my tumor couldn’t be seen with mammography.

A4ggy

Jsann11,

Sounds like you are in beginning stages? I had the A drug and other than fatigue I was ok. I swear by acupuncture and have done it consistently 2x a week. It really helped with side effects. I even started it before my first A treatment. I did neoadjuvent chemo. They believe my lymphnodes were clear based on multiple MRI, CT and even an extra ultrasound to check a "fluffy" looking lymphnode. My dr said if anything was in my nodes, it would be dead by now with the AC/T. But it's "highly unlikely" anything was in there. Who knows until they go in on Jan. 29th. I believe they wanted to do chemo first to shrink tumor and give me the option for a lumpectomy. At one point, I did want a lumpectomy, but ultimately, I've decided to go for a double with immed. reconstruction. It's so overwhelming with all the decisions and information....

VL22

Jsan11 - I had AC together and I had a big issue with nausea. My big mistake was not switching to a nausea patch sooner - the two oral meds just didn’t work for me. But that being said the chemo experience is obviously no fun, but it is doable. Keeping a journal really helped me. I kept track of SE’s and my MO was great at responding to my needs. Journaling was great for me in general to keep track of eating, weight, exercise and emotions. I may burn it at some point!

I think I read somewherevthan any ER under 10% is treated as negative

Jsan11

Lovemyvizsla - Thank you, that's the first time I've heard that term so glad hear there is rationale behind calling it Negative. Since you had your chemo after, did they say why you needed the A drug? If I remember correctly what my MO said, I would only need it as part of my cocktail of chem after surgery if it was found to be in my lymph nodes.

A4ggy - I am in the early stages. I just got off the phone with the surgeon and I can be on the schedule as early as next week to do the Lumpectomy. I'm inclined to just go with it because I'm causing more stress on my body from trying to figure this all out and determine which course of treatment is best. I was already leaning towards Lump and chemo after. I didn't have any CTs. Only Mammo, ultrasounds, core biopsy and MRI. Thank you for the info on acupuncture! My sister-in-law mentioned it too. What kind of "treatment" with the acupuncture do I ask them for? I've only done it once before and it was years ago for sinuses.

VL22 - I like the journaling idea, will do that! Glad to hear about the nausea options ahead of time so I know what to ask for. I already have a sensitive stomach so I'm bracing myself with the thought of chemo and nausea.

VL22

Jsan11- the patch is called Sancuso. My center is just starting to really use it. I tried the nausea meds the right way - before feeling sick, around the clock, etc but I just felt horrible. This was the only thing that worked for me. The MO was concerned of the cost, but the pharmacy had a coupon and out of pocket for me was $20. I guess some insurances don’t cover it or something.

Jsan11

VL22 - Thank you I am definitely going to ask about this in advance

A4ggy

Jsan11, sounds like you have a good plan so far. I just told my acupuncturist what I was going through and they seemed to know how to start. As time has gone on I have mentioned certain side effects that I wanted to avoid such as neuropathy and they told me they would stay on top of that and I never had any? Currently, I am having some weird unexplained rib pain that my drs aren't concerned about so they are focusing on that a bit at acupuncture. I think if you just tell them your situation, they should be able to help you. Good luck!

Flynn

Jsan11, I had AC together and my main issues were nausea & fatigue. Not a picnic but doable. Yep, we did neoadj chemo so we could make sure my big mass was responding. Sounds like you’re making good progress!

VL22- interesting about that patch. I have many nausea drugs but all in pill form. I was setting my alarm to take meds in the middle of the night- apatch that stays on all the time sounds really good.

AgathaNYC

JSan11 - I'm just going to chime in to reassure you that the A of my ACT neoadjuvant chemo wasn't so bad. I didn't have any nausea at all. Mouth sores were my biggest complaint, and eventually fatigue caught up with me. Taxol has been rougher.

I've been thinking of trying acupuncture for my neuropathy symptoms. Has anyone had success with that?

A4ggy

AgathaNYC  I LOVE acupuncture. I have done it since before starting chemo and it's been so helpful. I did have to skip it one week and that is the only week that I had joint pain from Taxol. I was able to avoid neuropathy. I agree that AC wasn't bad. A bit more tired but mouth sores were my worst complaint. 

LoveMyVizsla

Jsan, I didn’t question what meds they wanted to give me. I figured they know what they are doing. It is in the top ten for cancer centers for the US. During AC, the two days after were tired days for me, but the rest of the week was fine. I kept a blog to keep friends and family informed. I still look back on it sometimes.

I was part of a focus group earlier this week, regarding pathology reports that are given to patients. Hopefully, they will become easier for patients to read and understand. I made sure to let the doc know that there wasn’t enough information in what they gave us for the triple negative patients. He said he will draft some language specifically for us.

Jsan11

The risks that I am worried about with the Adriamycin is the heart damage and possibility of developing another cancer. Those were the red flags for me. The Oncologist is the one who told me about it and said I would have to get a heart scan done before they could give me that due to the risks associated with it. We have no family history of heart disease

AgathaNYC

Jsan11 - yes, my MO went over those risks for me, too. The heart tests before treatment are standard I believe.

My thinking was that Adriamycin is has been well proven over a long time in being effective in killing Triple Negative cancer cells. That was my first priority. My present TNBC outweighed any future, possible negative effects.

Everyone has to figure out what's right for them.

Jsan11

AgathaNYC I am so glad the treatment is working well for you! If I decide to go with Lumpectomy, followed by chemo, then radiation there is still the chance that I will need the Adriamycin afterall. I am most inclined to go this route and let surgery determine if lymph nodes involved and that will the factor of wether I need the Adriamycin or not.

aterry

JSAN11 I did chemo first and then surgery. The post MRI chemo showed no evidence of disease. During surgery they found a trace of disease that was too small to show on the MRI. My MO and BS were upbeat about the chemo working so well. I understand your fear about A. I shared and still share that concern but I'd read my biopsy report and in every category my tumor was as at the top scale of agressiveness so I knew even before talking to my MO that I would need the ugliest of the chemo agents. I got through the A ok; mouth sores were my biggest problem but the center gave me mouth rinse to deal with that. I was tired and foggy for about 6 days of each cycle and then I'd be relatively OK until the next infusion. As others have mentioned, I had a harder time with Taxol. That caused more chemo brain and hand/foot numbness.

Arlene one of my friends has a mammo every 6 months alternating by an ultra sound every 6 months. So she has 2 scans a year. I have 3 months to go in the Tapimmune trial which includes a clinical exam every month. Getting those checks helps with the anxiety even though the tumor I had was never ever felt by any doctor, even after it had been marked with a clip.

greenae

aterry

My tumor was never felt either, nor did it show on mammo. It was focal assymmetry on mammo that led to my first US. The radiologist told me she was very sure it was BC before I had the first biopsy.

Occasionally I wonder/worry about the MX side, but every little lump I feel is thought to be from fat necrosis from the reconstruction, as per my MO, BS and PS. I agree, the frequent checks make me feel better, and as time moves forward, that sure helps, too.

Meow0369

Jenjenl and Batesburg, Thankyou so much for sharing! I took no chances went to see my PS and he poked and pinched the bumps so he could feel what they are. He said he's 98% sure it's not cancer but that there's not guarantees in medicine. It could be dissolvable stitches too but i had surgery 2 months ago the others are gone. Or it could be the Alladerm. They are near my cleavage not where my other tumors were but that's the reality of being TN. I asked for a US so I go next week. My nerves are shot and haven't slept in days. I also called my MO office they said to wait after results. What should I do ? Wait ? See a breast surgeon for second option ? Any ideas on protocol ladies?

Batesburg

Has anyone heard from Shopgal?

Cathytoo

Batesburg...I just sent Shopgal a private message. Hope she’s OK and too busy to be on the site