Calling all TNs

VBM: I had some anxiety too about my first post-surgery mammo, which was last week. I have had mild intermittent 'pains' in my breast (I think from nerves still healing and hooking up) but it was suspenseful in case that pain was due to anything bad. But my mammo was perfect-- "come back in a year"-- what a relief. I wish you a perfect clear mammogram -- and the ability to exhale and have months of relaxation on the other side!

Hi Volleyballmom2008,

I'm jealous that you're getting your port removed today! My last chemo treatment was March 21, and I thought I was getting it out in May, but my surgeon said she didn't want to do it at the beginning of summer when summertime activities increased the risk of infection. I was extremely disappointed, but I can really understand your ambivalence about it. I too felt "better" when I was getting chemo and radiation. How weird that must sound to people who haven't been through this. You almost envy the hormone receptor positive ladies who "get" to take a pill for a while just for the peace of mind you might get from continuing treatment of some kind. So I wish you peace and calm as you begin this new chapter, post-active treatment. We're all crossing our fingers and holding our breath with you and for you!

Hi ucfknights,

I had quick follow-ups after the end of chemo and at the end of radiation with the docs. Because I still have my port 3 1/2 months after the last chemo treatment, I've had to have it flushed which doesn't require a visit with the MO, just with a nurse at her office. I'll see her again later this month, and then quarterly after that for a few years. I've seen my surgeon a few times since surgery on 12/10 - follow-ups from surgery and port installation - but after the port comes out in September, I'll see her every six months for a while, then annually for a while after that. Neither doc gave me a hard end date, of course. I had radiation also, and will have follow up with her, but after the 9/19 appt, I'm not sure when I'll see her again. Among these three, RO, BS, and MO, plus my OB/GYN, I'm not sure yet which one will monitor my mammograms going forward, but I'll be due for one fairly soon given that the annual mammo that started this whole thing was 10/15/18.

As I've heard from many here and elsewhere, especially among us TNs, the end of the surgery/chemo/radiation can be cause for high anxiety because we're basically left high and dry in the treatment department. There is no pill for us at this point. And no one is looking at us as regularly. I'm having some issues with my lymphedema (probably) and when I talked about it with the RO, she said "it's not cancer," knowing without me saying it that I'm scared that it is. My husband was surprised to hear me acknowledge that fear. I try to keep that one kind of hidden. No need to have my loved ones hear my (probably) irrational worry. But it's there, and (probably) always will be.

Good luck to you and your mom.

Anne

PiperKay, I only saw my surgeon once after my last surgery. I saw my radiation oncologist, I think for a six month follow up after radiation, and didn’t know it was my last appointment with her. I wish I could have thanked her one last time. I have been seeing my MO or her staff every six months. After my mri and mammogram in August, I will be on a yearly schedule again. After the five year point, I will be seen at the wellness clinic unless I have a recurrence.

one note about the presurgery imaging. I had “something” show up on myMRI and mammogram. My docs said it could be live cancer, dead cancer or scar tissue. I had a bit of an emotional roller coaster worrying about it. Turns out, chemo worked, but there was no way to know until after the surgery. Even if the MRI comes back with something to worry about, as another poster here said, it’s not over until the pathologist sings.

Good morning Ladies. What a week it has been. But all good. God is good. My port was removed on Monday u had so much anxiety about it and felt like maybe it should stay in one more week til after my mamo. My sugeon said no it is fine it comes out. Out it went, Thursday I had my first mamogram. All good. I can not tell you the anxiety surrounded my the whole day, the thought of doing this was overwhelming. My surgeon said come back in a year, I said no. I need 6 months this time. I know I need to calm down and let this go. I have felt so good and relieved this past few days. I hope it lasts.

My mom is triple negative. Her tumor has shrunk during chemotherapy. During taxol and carbo, she had several delays due to low immunity/fever..etc. Now the tumor looks bigger. MO is very concerned about this and wants her to skip the remaining infusions and move to surgery. Do you think tumor has grown during chemotherapy? Is it possible?

She has two weekly infusions left. Mom insisted on taking the remaining infusions since surgery can take a long time to schedule

Thank you santabarbarian!

Taxol and carbo worked greatly at the beginning, and then tumor started to look bigger. I suspect that this could be scar tissue or inflammation, although MO doesn’t think so!

Post a reply

15 minutes ago EMD13 wrote:

Hi everyone,

I recently had a BMX due to DCIS in both breasts and multi-centric DCIS in one breast, so a total of 3 areas of DCIS, 2 of which were TNBC and one weakly hormone positive. When the final pathology was done it showed a 3 mm area of invasive Ductal triple negative cancer. My breast surgeon said with size no chemo or radiation but did want me to start following up with a MO. She said a lot of the MOs will not order routine blood tests to check for tumor markers, etc. but she believes in it and the MO she referred me to does also. I went yesterday to see him and was not so impressed. I really like my breast surgeon, she is extremely smart and I feel very confident with her care. So the MO did confirm no chemo due to the size and thinks I should not need radiation yet he said I need to see a RO in his group (very large cancer group in Florida) for him to confirm no radiation. He also wants me to have a Pet Scan to confirm no cancer anywhere else. So my breast surgeon just told me 2 weeks ago I was cancer free now this guy wants me to have a Pet Scan. I also have new insurance with a new high deductible so know that this test will probably be all on my dime.In doing my research on TNBC I see where it is suggested that follow up for recurrence does not show that additional blood tests and CAT/PET scans without symptoms are beneficial to patients in avoiding a recurrence or living longer. This article along with the same information on TNBCfoundation.org is making me wonder about having this done.

https//www.cancer.net/research-and-advocacy/asco-care-and...

This visit with him yesterday already has me stressed out.

Any thoughts on this?

Yes @MountainMia I guess he would be ordering that test to check for any other cancer now which would mean mets although he said he wanted to get a baseline also so I believe he would be doing periodic pet scans going forward. I am going to cancel the pet scan and I don't think I will go back to that MO. There were a few things I didn't like about him and I don't agree with the kind of follow up he wants to do.I find it is so important to feel comfortable and confident with your doctors when you are diagnosed with cancer.

Thank you for your response!

When I was first diagnosed and found to be triple negative, my MO suggested doing a PET scan just to make sure all was well in other areas. A tumor was found in my lung. To say the least I was shocked, but glad the MO had checked. It changed the course of treatment and made a big difference in my choices. After six months on Abraxane, both tumors appear to be dead. I convinced the MO to do a lumpectomy and SBRT to the lung. I want to kill both tumors twice! I will have to restart chemo. My goal is to work toward NED and maybe a pill as a maintenance procedure.

Good luck

So the National Comprehensive Cancer Network Guidelines for invasive tnbc under 5 mm and nodes negative advise no adjuvant therapy. Mine was 3 mm so the MO did say no chemotherapy and I see that is pretty much the standard. Which is why I would question having a Pet Scan thinking there might be a metastasis somewhere else. I was so disappointed after dealing with all of this since January, 3 biopsies, etc. I see that the recommendation for follow up with early stage even tbnc is not to do all the imaging and bloodwork without symptoms as it won’t change the outcome. This was even mentioned on the tnbcfoundation.org site in follow up care. So it seems odd since I had a double mastectomy, clear nodes and such a small tnbc invasive cancer that that doesn’t even warrant chemo that he would want me to get apet scan to look for a metastasis.

EMD, I think there's a difference between doing scans later and doing a scan this early. Just because you've had surgery, you're still not actually done. To me it sounds like he is still trying to confirm your staging and finalize your diagnosis. The links you're posting to are referring to not doing scans after complete diagnosis & finishing treatment.

I think he's saying "given the info I have now, I wouldn't recommend chemo or rads but I don't have all the data because you haven't gone through all the diagnostics yet". You haven't finished being diagnosed and potentially haven't finished treatment so these are not follow up appointments, these are still diagnostic appointments.

If there's stray things lighting up in lymph nodes for ex, he might recommend rads or a short course of chemo. Or as JCSLibrarian pointed out, you might find out you're actually stage IV de novo which would again drastically change the treatment plan.

best wishes

SA8PG, thank you for stopping in to cheer everyone on! Congratulations on your 5 years! Wishing you >50 more!

Thank you ladies. This board was a huge lifeline for me when I was first diagnosed. We are here to encourage however we can.