Calling all TNs
Comments
-
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.
0 -
meow - I had that happen to me and it was disovable stiches. One popped and the other dissolved.
0 -
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.0 -
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.
0 -
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.
0 -
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....
0 -
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
0 -
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.
0 -
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.
0 -
VL22 - Thank you I am definitely going to ask about this in advance
0 -
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!
0 -
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.
0 -
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?
0 -
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.
0 -
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.
0 -
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
0 -
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.
0 -
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.
0 -
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.
0 -
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.
0 -
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?
0 -
Has anyone heard from Shopgal?
0 -
Batesburg...I just sent Shopgal a private message. Hope she’s OK and too busy to be on the site
0 -
thanks for sending her a private message. I have, too!!
0 -
hi ladies. I’m ok. Just taking time off the boards lately. I have 1 more taxol carbo to go for my uterine cancer. Then on to pelvic rads. I just had a clean mamo this past week. In May it will be 3 years from dx. Hopefully I will be able to say that about my uterine cancer too. Here’s to wishing everyone an easy winter
0 -
((Shopgal)). Wishing you no side effects from your treatments.
0 -
thinking of you Shopgal
0 -
Great news on the mammogram, Shopgal. I'm very sorry that you're dealing with cancer at a second site and hope that all goes smoothly as you complete your treatment.
Lyn
0 -
Cancer sucks. My very healthy 42 yr old friend was just DX’d with TN.
0 -
Val...so sorry about your friend. It never ends. Hoping all will be well with her. Lucky she has you for support.
0
