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So anxious about surgery time

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    Posted: Feb 02 2021 at 3:40pm
Hi friends! Just reaching out for some reassurance. Here is where Iím at right now. Iíve finished chemo and had been looking for a good surgical team. Unfortunately wasnít too happy with the team at the hospital I did chemo at so started scheduling consults immediately, even a couple weeks before chemo ended to make sure I am still in a good window for surgery. I have read in some places 4-6 weeks is a good time for surgery after chemo and some studies and people said 4-8 weeks. Well I was supposed to have my surgery today 02/02 with a team I was sure I liked. That would put me at exactly 7 weeks post chemo... this was already making me slightly nervous as my goal is to hopefully reach a PCR and not much is out there about achieving one post 8 weeks some articles even saying 6. Post chemo MRI showed complete radiological response but this does not guarantee a PCR. I was getting used to the idea and heard a couple girls say they reached PCR at 7 weeks but now with this north east snow storm the surgical center had canceled my surgery for today the day before(and lo and behold today there was no new snow and plowed roads so they canceled for nothing). The earliest my team said they can get me in is 02/10. Next Wednesday putting me at 8 weeks and one day. I am beyond anxious and scared of moving the surgery this far out. The PA for my surgeon reassured me that one week wouldnít make a difference and they canít do any earlier. Has anyone hear heard or personally know that 8 weeks (and one day) still is an acceptably safe time for surgery?
28 yrs old,BRCA positive, 1.7cm tumor, stage 1A, no known lymph node involvement.(dx 06/30/20)
4AC 12Taxol 3Carbo (07/16/20) BMX with Expanders (02/10/21) PCR/NED (02/24/21)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2021 at 8:44pm
Dear Suzy,

I am not a medical professional and will not give you medical advice but anecdotally, helping hundreds of women as a patient advocate, I don't think the extra eight days should cause you a lot of worry. The main thing is that you are confident with your surgical team. TNBC is very sensitive to ACT and the Carbo will hopefully help you achieve a PCR. It's also great that there was no lymph node involvement.

My daughter inherited her BRCA1 mutation from me and is now 16 years NED after being diagnosed with TNBC at age 36. She has had all the surgeries. I am rooting for you, big time.

Please try to find the "beauty in each day." The eight days will, hopefully, go quickly and again, I am hoping you have a PCR. 

We will be here for you. 

with my love to all here,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SuzyQ92 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 02 2021 at 9:15pm
Thank you! You always know just what to say! Thatís very good to know and keep in mind! I will keep holding on to that and keep thinking that the next 8 days.really hoping this push back makes no difference in outcome for me. Iím so sorry btw that I never had replied to your last message from my forum post from a couple months ago. Finishing chemo and figuring out all these surgery things had taken over for me. Appreciate you responding and being so encouraging! Smile
28 yrs old,BRCA positive, 1.7cm tumor, stage 1A, no known lymph node involvement.(dx 06/30/20)
4AC 12Taxol 3Carbo (07/16/20) BMX with Expanders (02/10/21) PCR/NED (02/24/21)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2021 at 9:50am
Dear Suzy,

No need for you to, ever, apologize. All, any of us can do, is try our best today and tomorrow and 'would of, should of, could of should stay buried with the word if.' We can't re-do the past.

Suzy, I personally admire the way you have handled everything. You have had the strength/intelligence to make appointments, start treatment, and zero in on the best surgical team. I have seen, understandably, women with TNBC, even absent a BRCA mutation be overwhelmed by the diagnosis and when a positive BRCA mutation is added to the mix it is an extremely difficult combination.

My offer to speak with you is open-ended. And my welcome will be seamless. You will never hear the words "I wish you had called me before" from me. 

Be well/safe and again, good luck. Thanks for your kind words and the time will pass.
It's only 7 days now. Smile

warmly,

Steve

 
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SuzyQ92 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2021 at 4:30pm
Thank you so much Steve! I will keep that in mind and definitely get in touch if I ever have any questions. I really appreciate you taking the time to always answer everyoneís questions on this forum and put them at ease!

 Yes. 7 days! I keep telling myself itíll all be okay and the worst is only in my head and not necessarily the truth of whatís going on! Trying my best to self advocate and make the best decisions to give myself the best chances. Even with all the trying I couldnít control the weather and doctors say they absolutely canít get me in earlier so Iíve done all I could and just hope for the best now! Once in a while I feel a random sensation in the same general area of where the cancer was and worry thereís something growing even though I saw a radiological complete response on MRI just a few weeks ago. But Iím trying my best to convince myself itís nothing and I have random pains all over from treatment and thatís probably what it is. these next 7 days will just be a lot of mental work to keep myself from becoming too anxious and dejected! Thanks again for your response! 
28 yrs old,BRCA positive, 1.7cm tumor, stage 1A, no known lymph node involvement.(dx 06/30/20)
4AC 12Taxol 3Carbo (07/16/20) BMX with Expanders (02/10/21) PCR/NED (02/24/21)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2021 at 6:54pm
Dear Suzy,

Thanks again for your kind words. I hope you reach out at some point and that I can be of some use. 

Two true stories both pre-Covid.

I went to MD Anderson Cancer Center in Houston for a MRI with special protocol for Cancer of the Pancreas. Because of my BRCA mutation I try to avoid CT scans. I have a family history of Cancer of the Pancreas. I had introduced probably 10 people, over the years, to the oncologist and we had become friends. I was there, alone, and he told me "Steve, we found a cyst on the neck of your pancreas." And I am embarrassed to write that he continued to talk but I did not hear his words. I just saw his lips moving. He stopped talking and somehow that got my attention and he said "are you with me? you seem to be somewhere else." I brilliantly said "I can't believe I have Cancer of the Pancreas." And I told him the part that I heard.

He replied..."I also said that I think the cyst is benign but I would like you back in three months to re-evaluate things. What you needed today was a good advocate like yourself."

So, here I was a patient advocate who tries to be laser focused when I am accompanying someone to a consult who went to a personal black hole, self-created, as I heard about the cyst. The follow-up scan showed that the cyst had dissolved.

Second story-A wonderful woman I had been helping with metastatic TNBC for five years had a PET/CT and I accompanied her, a few years ago, to her consultation to go over her scan. 

Her oncologist's evaluation was that she had 'stable' disease which is a decent result. Not great but decent with metastatic disease. At least no progression. The oncologist told her to come back in 3 months and when he left the consult room she started to cry hysterically. 

I asked her, "What's wrong?" She looked at me, very agitated, and said "what's wrong?
didn't you hear what he said? He said I would be dead in three months." "No, he didn't he wants you back in 3 months to see how you are doing but he was pleased with your results." "OMG, are you sure?" "Yes, but if you want me too I will try to get him back and I will have him tell you, again." "No, I trust you. I am so glad you were with me." And the best part of the story is that she still has stable disease. I have been able to attend all of her consults via Zoom, which I know is helpful to her but each scan and follow-up consult is high anxiety, which is understandable.

Sorry, post is so long but the point I was trying to make is that cancer can truly mess with your head. I would suggest discussing your concerns with your medical/surgical oncologists about the "general area" near the location of your tumor and be guided by their advice.

There is no 'easy' here, Suzy. But, again, I think you are doing a great job and I am rooting for a PCR.

warmly,

Steve

p.s. I am starting a new thread on the BRCA mutation with a suggestion to attend a conference. Maybe you can have a relative/friend record it?

I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2021 at 7:07pm
Hi Suzy, I'm sorry that your surgery was postponed, waiting is always the hardest part! I always tell myself when things are changed and out of my control that it happened for a reason. Yes, this is all a mental game and you will win! Remain positive and strong as you have been and you will get through.

I totally understand your worry about every ache and pain we feel. We all experience the same thoughts now and again. It's a fine line we walk between being aware and paranoid. Try your best to focus on the good like your post chemo MRI:) ,great news! Also remember to give yourself credit on how far you have come. It's a long tough road and you are hanging in there and doing a good job.

I wish you all the best and I will keep you in my daily prayers.Hug
Andrea
8/2016,IDC,Stage IA, Grade 3,0/1 nodes ER-/PR-,HER2-
9/2016 BMX;Recon Saline implants
6/20,StageIIIC,Grade3 ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SuzyQ92 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2021 at 8:28pm
thank you so much Andrea! Good things to keep in mind and try to keep that balance between aware and paranoid! Definitely mentally taxing but staying as positive as we can during this hard time is very worth it! And yes. I keep trying to hold on to the good news of the MRI to keep me sane right now! Thank you for your kind response! Smile
28 yrs old,BRCA positive, 1.7cm tumor, stage 1A, no known lymph node involvement.(dx 06/30/20)
4AC 12Taxol 3Carbo (07/16/20) BMX with Expanders (02/10/21) PCR/NED (02/24/21)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Amrit Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2021 at 11:50am
Dear SuzyQ92,
Hope you are doing well and getting ready for the surgery.
I am in the middle of my ACT treatment: so far completed 4xAC and 2xT.  I met my surgeon after AC treatments, and he explained to me that after the completion of chemo, I might need up to 6 weeks for recovery, and in some cases it is 8 weeks.  My surgeon is highly reputed in the area I live in, and I know 3 other women, incl. TNBC patients, who have had their surgeries performed by him.
If you had to wait a bit more for your surgery, please don't worry! Instead use this time to eat well and exercise as much as you can. I am also BRCA+, so I am also headed to a second surgery to remove ovaries.
Wishing you a complete recovery!!
Amrit
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SuzyQ92 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2021 at 7:06pm
Amrit,
Thank you so much for your encouraging response! That is good to keep in mind. It seems like I am seeing 8 weeks is not as far off as I feared. Doing just that! Staying busy end using this time to build myself up to be ready for surgery. I really hope everything goes well for you with chemo and surgery and you have a full recovery as well! ☺️
28 yrs old,BRCA positive, 1.7cm tumor, stage 1A, no known lymph node involvement.(dx 06/30/20)
4AC 12Taxol 3Carbo (07/16/20) BMX with Expanders (02/10/21) PCR/NED (02/24/21)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Plume Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2021 at 3:06pm
Suzy said

"Staying busy end using this time to build myself up to be ready for surgery".

A word of encouragement for you, Suzy, all the way from here in France.  What you are doing is EXACTLY the right thing to do!  It doesn't matter where in the world you live, the challenges are ever present.  And we do live in countries with medical services and all kinds of help available.  How blessed and lucky we are, don't you think?

My surgery and urgent, time-sensitive treatment is all done.  I have just had one breast reconstructive op (cutting away of scar tissues and hardened fascia and filling up with fat taken from my abdo) and now will have the second in the beginning of April.

I have taken the time during lockdown (no eating out or with friends, no entertaining others, no exercise classes, no theatres, cinemas, etc) to get myself surgery ready.  More attention to freshly prepared meals ensuring nutritional, tasty meals loaded with vitamins and plenty of exercise, indoors and out.  Also, learned to meditate and  do Pilates and breathing exercises  So, I motored through the op, even though the anaesthetist damaged my bronchus.

That's the most important point you have made.  Concentrate on the things you can do for yourself and, even if other things have little blips, you will still be strong enough to emerge in a good condition.

All the very best for your surgery
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2021 at 4:33pm
Dear Suzy and all,

This thread is just one of a myriad of threads that I believe shows what a wonderful forum this is. The support you have received is so typical of why I love this forum. You have received knowledgeable, gentle, beautiful support from the wonderful women who populate this site. 

And only 3 days left. Smile The time does pass, doesn't it?

We are all wishing you a successful procedure, smooth non-eventful recovery and PCR.

We shall continue to be here for you.

with my love to all here,

Steve


I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SuzyQ92 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2021 at 7:14pm
Thank you all so much for your support. Definitely helps me be able to stay positive on days when I feel a little down or anxious because of things out of my control. Yes three more days and hoping I have a PCR!! I guess itís better to be at the point where I am excited and 100% ready for surgery as I am now than if it was earlier and I was more nervous and unsure.  I will keep you all posted! 🤗❤️
28 yrs old,BRCA positive, 1.7cm tumor, stage 1A, no known lymph node involvement.(dx 06/30/20)
4AC 12Taxol 3Carbo (07/16/20) BMX with Expanders (02/10/21) PCR/NED (02/24/21)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SuzyQ92 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2021 at 9:47pm
Iím so sorry Steve! For some reason I missed your last message speaking of the two examples of people in similar situations, including yourself. I am so glad that it ended up being benign for you and that the woman with MTNBC is still doing well! Itís very true! Even before all this I had a bit of health anxiety and now it even worse where anytime I feel a pain or something out of the ordinary I canít focus on anything else. Cancer does mess with your head but Iím trying my best to let the reasonable part of my brain take over and say youíre okay or not to worry about things that I donít know to be true as of this moment and probably arenít the case. Iím figuring theyíre cutting everything out tomorrow and I should know after that how much if hopefully none of the cancer is left and put my mind at ease! Ready to move on to the next step! 

Edited by SuzyQ92 - Feb 09 2021 at 9:49pm
28 yrs old,BRCA positive, 1.7cm tumor, stage 1A, no known lymph node involvement.(dx 06/30/20)
4AC 12Taxol 3Carbo (07/16/20) BMX with Expanders (02/10/21) PCR/NED (02/24/21)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Feb 09 2021 at 10:10pm
Dear Suzy,

The last thing you need to do is apologize..

One day left!!! The time did pass.

Again, wishing you all the best, now and always.

warmly,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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