Calling all TNs
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kber your hair is coming back great!!
By the same token, my MRI showed nada... but the surgeon said there can be a small amount of cancer that does not come up on imaging... so again, a good MRI needs to be confirmed by surgery too. Wishing the best for your Mom.
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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.
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Yay Volleyball mom!! So happy to hear it!!
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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
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It is possible for a tumor not to respond to some chemos. Neoadjuvant chemo lets the MO see the tumor's response to chemo. Hopefully it is still net smaller than before. I send you a hug kkmay!
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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!
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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?
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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?
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Hi EMD13. It sounds like you've received a confusing recommendation. I'm don't know specifically about the PET scan since I'm no expert, but it's hard to think why one would be helpful.
The link you gave is interesting but I'm not sure it's related. You aren't really talking about being scanned for recurrence, if I understand correctly. It sounds more like you're talking about being scanned for mets along with your first diagnosis. With stage 0 DCIS and such a small IDC, it's really hard to think you'd have mets. It's good you're looking into it and asking questions. I can't tell you what to do, but if it were me, I would probably decline the PET scan.
Good luck and let us know what you decide.
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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!
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Ill give a counterpoint opinion to consider...
It becomes clear on this site and reading the stats that metastases can and do happen even when women catch it early and are told their nodes are clear. I think with nasty BCs, like TNBC, it can be better/safer to 'over-treat' slightly. I suspect your tiny cancer was caught early enough and that is wonderful. However, no guarantee, as stray cells are stray cells. If your doc is concerned, maybe ask if there a possibility of a liquid biopsy in lieu of mri? Glad you got on it fast and early.
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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
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ah, EMD13 and santabarbarian, somehow I missed the triple negative connection. Just shows you shouldn't try to answer important questions on chemo brain. (And somehow I didn't get it, even in the TNBC forum.)
Certainly a second opinion is in order.
For me, I chose what might have been overtreatment. My doc is a minimalist and was reluctant to recommend chemo for my 1.5cm grade 3 tumor, 0/3 nodes. I used the Predict breast cancer tool from the UK and for my personal circumstances, this is what found:
So again, this is ME, not you, because I don't know your stats. For 100 women with my tumor, age, etc, 5 years out from surgery I can see there would be 82 survivors with surgery alone, and 3 deaths from other causes. What strikes me most are the 15 women in the middle, 10 breast cancer related deaths and 5 who survived because they'd had chemo. That is five who would have died if they hadn't had chemo. I want to be one of those 5.
Here is the link to the tool. https://breast.predict.nhs.uk/tool
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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.
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Yes, it seems odd. Again, since you're not comfortable and confident with him as your doc, a second opinion is a good idea.
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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
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Hi pink sisters
Stopping by to say hello. Hard to believe I’m posting 5 years cancer free!!!! I NEVER thought I would see this day. Just wanted to encourage you along. Having one another and the wise counsel of those that were Trail Blazers for us is truly a blessing. Lifting those of you up in prayer that are still in treatment. You can do this. Much love to all
G
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SA8PG, thank you for stopping in to cheer everyone on! Congratulations on your 5 years! Wishing you >50 more!
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SA8PG. THANK YOU for coming back and giving us support and such good news. I pray and know it will continue for you. We are in treatment and plugging along. By God’s Grace we will follow in your footsteps!! Thanks again.
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Thank you ladies. This board was a huge lifeline for me when I was first diagnosed. We are here to encourage however we can.
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Hi ladies!
For those of you who only had a tumor in one breast, did your surgeon recommend BMX, or it was your choice to get a BMX?
My mom is getting mastectomy only on the left breast. Surgeon does not want to remove both breasts, he thinks it’s unnecessary. I’m scared of cancer escaping to the next breast.
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Kkmay, my tumor was smaller, 1.5cm IDC with 2.9cm spread DCIS, but I had a lumpectomy. I'm happy with that decision. No one tried to suggest anything else was needed for me.
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Kkmay-My dr. gave me the option of mastectomy on the one side or lumpectomy with radiation. There was no discussion on the other side. My dr. made me feel like the mastectomy on the one side is on the "over-treating" side. If I was BRCA positive, then I think they would have recommended both. I was told that the chances of recurrence are the same, and that the risk of triple negative is not necessarily it coming in the other breast but to other areas of the body as well.
Is it possible for your mom to get a second opinion?
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SA8PG-Congrats, and thanks for sharing! It is great to hear the good stories.
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My Nat has the BRCA2 so the oncologist said a DMX is highly suggested. So we will be doing that. With BRCA2 the chance of recurrence is high but we were told with the DMX it would greatly reduce the chance to under 10%. Nat will also have her ovaries and Fallopian tubes removed when she is fully recovered. Hope that helps.
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Kkmay, my tumor was also smaller, but like MountainMia, I was given both options and told lumpectomy w/ radiation and mastectomy had equivalent statistics on recurrence. I chose lumpectomy as the best option FOR ME. The surgeon gave me the choice and I didn't get the impression that she was leading me either way.
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Thanks, PiperKay. This is the information I had, but you explained it much better. Thanks.
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piperkay can u tell me a little bit about your radiation. As of now they are hopeful we won’t have to do radiation as there is no node involvement. They won’t know for sure until DMX and pathology. If we do it would be 5 days a week for 6 weeks. It only is supposed to take about 10 min/da!?!
Thanks.
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I thought originally i wanted dmx..my doctors suggested to do lumpectomy bcuz mx wldnt change reoccurrence. Also I needed radiation which wld weaken the skin. Less likely for complications in lumpectomy. The team said. 6 months after healing if I still want the dmx they wld do dmx. I havent changed my mind and I went with LX and Im almost 1 year out since surgery.
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Kkmay— my surgeon did not push one over the other and left the decision with me. After finding yet another spot (already had one) questionable area during diagnostic mris I wanted a BMX and was supported 100%!
Edited to add: I also was told that any options single, double, or lumpectomy ( which was possible since all my spots were in one quadrant) would all be about the same rate of recurrence
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