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Quill

My next unintended challenge - UPDATED In 1st post

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2 minutes ago, Catwoman said:

 

I’m sitting here with tears in my eyes because I feel so relieved for you. I know that sounds so weird considering that you just got diagnosed with something nobody wants and that nobody wishes on their worst enemy, but this is the very best possible news you could have gotten today, and the genetic report seems to be the only real question mark right now. Do you have any family history that would make the genetic aspect more likely?

 I’m so glad you didn’t ignore this and that you got it checked out before it had a chance to grow.

I’ll keep praying for you every day and sending lots and lots of positive thoughts. (And I won’t even argue with you about purses, I promise!!! ? )

You know we are all here for you whenever you need us for anything. 

It does make them nervous because my mother and maternal gm both had breast and my gm had ovarian. Other great-aunts and different people I think also had it but I think they were not direct bloodline people. However, my mother did have genetic profile done when she had BC five years ago and she does not carry the BRCA mutations. (Still, that is not all there is to it...) we just won’t know for certain until that is done. 

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3 minutes ago, Quill said:

It does make them nervous because my mother and maternal gm both had breast and my gm had ovarian. Other great-aunts and different people I think also had it but I think they were not direct bloodline people. However, my mother did have genetic profile done when she had BC five years ago and she does not carry the BRCA mutations. (Still, that is not all there is to it...) we just won’t know for certain until that is done. 

 

It’s definitely a point on your side that your mother didn’t carry the mutations. I know it takes time to do the testing, but I wish there was a way for you to get the test results sooner, preferably yesterday! Worrying about the unknown sucks. 

Edited by Catwoman
I can’t type at all today!
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Just now, Catwoman said:

 

It’s definitely a point on your side that your mother didn’t carry the mutations. I wish there was a way for you to get the test results sooner, preferably yesterday! Worrying about the unknown sucks. 

True, but honestly, the BEST thing of all I heard today was “Grade 1 - show-growing” because I have some pains in my breast and my imagination was having a field day with that. I was feeling very fearful that we have no time! Hurry up! Kwim? It is a relief to know it’s not going on a rampage in there! 

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1 minute ago, Quill said:

True, but honestly, the BEST thing of all I heard today was “Grade 1 - show-growing” because I have some pains in my breast and my imagination was having a field day with that. I was feeling very fearful that we have no time! Hurry up! Kwim? It is a relief to know it’s not going on a rampage in there! 

 

Definitely!!! I’m sure you’re just wanting to get the show on the road and get it out of there! It’s creepy to think there’s something inside you that shouldn’t be there. Knowing for sure that it’s grade 1 is very encouraging, but the slow-growing part is the most important thing!

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Quill, I'm so happy for you and for your good news! I hope your other tests turn out the way you need them and that your treatment goes smoothly and is 100% successful.

(((quill))) <----- happy hugs!

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That is such a good report! I’ve been paying attention lately to some of the reporting on breast cancer and they said that a lot of these smaller cancerous just don’t need aggressive treatment. That what you were talking about is something that could have gone undetected for a very long time if you weren’t so aware of  your body. Sounds like your care plan is spot on! 

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Oh, and I would highly suggest you get a second opinion once you have all the results. With another oncologist. This isn’t the kind of thing where you go with whatever the first person says. For instants, with radiation I believe you can’t have it again in the same spot. So you really want to make sure that is the very best route before you do it.

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14 minutes ago, Ktgrok said:

Oh, and I would highly suggest you get a second opinion once you have all the results. With another oncologist. This isn’t the kind of thing where you go with whatever the first person says. For instants, with radiation I believe you can’t have it again in the same spot. So you really want to make sure that is the very best route before you do it.

You are not the first person to say this but I have decided to do this only if certain complications arise. I feel very confident with this surgical oncologist and her philosophy of treatment. I don’t want the delays and/or fihting with insurance that could happen if I go for a second opinion. 

I will go this route, though, if genetics or lymph node involvement turns out a certain way and we’re talking double mastectomy with reconstruction and chemo. Or if something doesn’t sit well with me as we move forward. 

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10 minutes ago, Quill said:

You are not the first person to say this but I have decided to do this only if certain complications arise. I feel very confident with this surgical oncologist and her philosophy of treatment. I don’t want the delays and/or fihting with insurance that could happen if I go for a second opinion. 

I will go this route, though, if genetics or lymph node involvement turns out a certain way and we’re talking double mastectomy with reconstruction and chemo. Or if something doesn’t sit well with me as we move forward. 

I can understand that - mental health matters too and if you just need it OUT ASAP, that makes sense. Maybe just do some research on various protocols? 

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Just saw your update!  So glad for you that it's slow and early.  So relieved.  You'll fight this and win.  

Edited by Garga
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On 10/3/2018 at 12:54 PM, Quill said:

Your wish is my command! ?

Initial pathology is very good. For those who like the technical details: Stage 1, Grade 1, ER+ and PR+, HER2-. For the layman: early, slow-growing, most common profile, 95% remission outlook. 

Still on the docket: sentinal lymph biopsy, MRI, genetic workup. Of these, the genetic workup is the slowest report and treatment partially hinges on that. That is a two-week-wait and it hasn’t been done yet. IF those workups don’t reveal unpleasant surprises, I can skate out of this with a lumpectomy and radiation. I’m hoping for this outcome; I do not want to go double mastectomy and reconstruction route unless the baddies lurking in my genes strongly suggest that route. 

Lots of appointments coming up! Feeling positive though and and SO relieved to hear the “slow-growing” and “early” parts of this report. 

What a relief that is.   Hope all the other reports are as positive.  

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Oh that could have been so much worse as reports go!  I’m so thrilled the news was encouraging, in terms of cancers, and hope genetics and such returns similarly hopeful results.  Yay!

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On 10/3/2018 at 9:54 AM, Quill said:

Your wish is my command! ?

Initial pathology is very good. For those who like the technical details: Stage 1, Grade 1, ER+ and PR+, HER2-. For the layman: early, slow-growing, most common profile, 95% remission outlook. 

Still on the docket: sentinal lymph biopsy, MRI, genetic workup. Of these, the genetic workup is the slowest report and treatment partially hinges on that. That is a two-week-wait and it hasn’t been done yet. IF those workups don’t reveal unpleasant surprises, I can skate out of this with a lumpectomy and radiation. I’m hoping for this outcome; I do not want to go double mastectomy and reconstruction route unless the baddies lurking in my genes strongly suggest that route. 

Lots of appointments coming up! Feeling positive though and and SO relieved to hear the “slow-growing” and “early” parts of this report. 

 

I am very sorry to read this news, Quill, but yes, your pathology is super positive. My sister was dx at age 39 with stage 3, ER+. No family hx or other obvious risk factors, so it came out of nowhere for us. She has been in remission for over a year. It is amazing how good the treatments are these days. I know it is scary, but you've totally got this. I don't know what state you live in, but cannabis really helped my sister with nausea and pain. Don't try to be a martyr. There are meds that can help with side effects. I am thinking of you, sending love, and will pray for a speedy and complete healing.   

Edited by SeaConquest
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Small update for those following along: MRI came back with no surprises. No additional areas of concern and showing lymph nodes of a normal, tiny size, suggesting they are not affected (only biposy will definitively answer, though). 

I met my treatment team today and got my genetics test on the schedule for next week. My oncologist is also (very thoughtfully and proactively, IMO) adding on a hematology component to investigate the lab claim from 2004 that I have Protein S Deficiency which theoretically caused my 2003 placental abruption. I think it shows great thoroughness that he wants to comb through this history. 

It is expected I will have lumpectomy and lymph node biopsy at the end of this month. Forward motion! It feels good. 

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Thank you for the updates and I'm so happy that things are going as well as possible. Still sending positive thoughts and big hugs to you. 

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Quill, I am SO happy you're getting such encouraging news, and that you have what sounds like such a thorough doctor!!

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Hugs and good thoughts winging your way. Glad you received encouraging news. 

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UPDATE: I have a surgery date. Oct 30. They will do a lumpectomy and lymph node biopsy. I don’t have the genetic test info back yet; that should be coming next Wed. It feels good to be moving forward. 

In a weird, partially-related plot twist, my mom, who kicked out BC five years ago, turned up with high cancer markers in her last check. Drs. are suspicious of some lumph nodes in her chest. She is having a biopsy on Oct 29. ? Something to be thankful for, though: I’m enormously glad my sister has moved back to the area because now there are two sisters here to help out. I was my mom’s “secretary” during her breast cancer treatment and if she has to go fight another round, we need reinforcements. 

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3 minutes ago, Quill said:

UPDATE: I have a surgery date. Oct 30. They will do a lumpectomy and lymph node biopsy. I don’t have the genetic test info back yet; that should be coming next Wed. It feels good to be moving forward. 

In a weird, partially-related plot twist, my mom, who kicked out BC five years ago, turned up with high cancer markers in her last check. Drs. are suspicious of some lumph nodes in her chest. She is having a biopsy on Oct 29. ? Something to be thankful for, though: I’m enormously glad my sister has moved back to the area because now there are two sisters here to help out. I was my mom’s “secretary” during her breast cancer treatment and if she has to go fight another round, we need reinforcements. 

I’m glad your treatment plan is moving forward, but so sorry to hear about your Mom. I’ll be praying for you and your whole family. 

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Cancer completely sucks...but I'm glad you got one of the best possible kinds to fight.  Your post reminded me that I'm due for my 6 month post-breast MRI mammo, so thanks for that.

May God and the Universe send you awesome doctors and nurses that steer you through this with zero complications, and may you find an army of friends and supporters to help you through. ❤️ 

Edited by umsami
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1 hour ago, Quill said:

UPDATE: I have a surgery date. Oct 30. They will do a lumpectomy and lymph node biopsy. I don’t have the genetic test info back yet; that should be coming next Wed. It feels good to be moving forward. 

In a weird, partially-related plot twist, my mom, who kicked out BC five years ago, turned up with high cancer markers in her last check. Drs. are suspicious of some lumph nodes in her chest. She is having a biopsy on Oct 29. ? Something to be thankful for, though: I’m enormously glad my sister has moved back to the area because now there are two sisters here to help out. I was my mom’s “secretary” during her breast cancer treatment and if she has to go fight another round, we need reinforcements. 

 

I am glad to hear you have a surgery date set.  I will be sending lots of prayers your way that day.  I am so sorry to hear about your mom.  I will sending lots of prayers her way.  I am glad you have more family around to help out. 

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On October 3, 2018 at 11:54 AM, Quill said:

Your wish is my command! ?

Initial pathology is very good. For those who like the technical details: Stage 1, Grade 1, ER+ and PR+, HER2-. For the layman: early, slow-growing, most common profile, 95% remission outlook. 

Still on the docket: sentinal lymph biopsy, MRI, genetic workup. Of these, the genetic workup is the slowest report and treatment partially hinges on that. That is a two-week-wait and it hasn’t been done yet. IF those workups don’t reveal unpleasant surprises, I can skate out of this with a lumpectomy and radiation. I’m hoping for this outcome; I do not want to go double mastectomy and reconstruction route unless the baddies lurking in my genes strongly suggest that route. 

Lots of appointments coming up! Feeling positive though and and SO relieved to hear the “slow-growing” and “early” parts of this report. 

Quill I am happy for the good news in this report.  I am wondering if one of the genetic tests you are waiting on is the one that gives you a score of 1-50....1 being a reoccurrence as unlikely.  My sister had bc about 6 years ago and her tumor was .1 over the size where they recommend chemo.  When she told them she wanted only the lumpectomy and radiation but no chemo they gave her a hard time....finally a doctor said well there is a test we can do......her number came back as a 2.  It annoys me they didn't offer the test until  she refused chemo.  Anyway she is doing very well--6 years cancer free.  

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28 minutes ago, Scarlett said:

Quill I am happy for the good news in this report.  I am wondering if one of the genetic tests you are waiting on is the one that gives you a score of 1-50....1 being a reoccurrence as unlikely.  My sister had bc about 6 years ago and her tumor was .1 over the size where they recommend chemo.  When she told them she wanted only the lumpectomy and radiation but no chemo they gave her a hard time....finally a doctor said well there is a test we can do......her number came back as a 2.  It annoys me they didn't offer the test until  she refused chemo.  Anyway she is doing very well--6 years cancer free.  

Yes, that is called Oncotype DX and they do that testing on the tumor after surgery. Fortunately this was offered to me as standard of care. There are also brand-new study results on this out in June 2018, that make the numbers more accurate than ever before if one scores in the ambiguous range. 

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2 hours ago, Quill said:

Yes, that is called Oncotype DX and they do that testing on the tumor after surgery. Fortunately this was offered to me as standard of care. There are also brand-new study results on this out in June 2018, that make the numbers more accurate than ever before if one scores in the ambiguous range. 

That is good to know.  I have been hearing lately that since the tests are more precise, they are recommending fewer people need chemo. I mean, if one new chemo, then they need Ibut I think there was a lot of over medicating for a while there. 

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1 hour ago, Scarlett said:

That is good to know.  I have been hearing lately that since the tests are more precise, they are recommending fewer people need chemo. I mean, if one new chemo, then they need Ibut I think there was a lot of over medicating for a while there. 

I agree. If chemo is the best course of action, then, well, okay - I will face it. But if I am well in the range of “not well recommended for chemo” then I will happily excuse myself from it. I have seen the effects of chemo up close and personal and I would much rather leave that a challenge uncronfronted if possible. 

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Because I am on here so sporadically I am just seeing this.  I am sending all my good thoughts, prayers, positive energy your way for you to be surrounded by clear minded medical professionals, that you and your family will be have peace and that all will go well with the best results possible.

For what it's worth, my grandma had a very similar diagnosis of a very small, slow growing tumor on one side in her early 50s.  She had it removed and a small amount of radiation treatments and has had nothing reoccur.  She is now 94 :)

Amber in SJ

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I’m so sorry to hear about your mom. I hope both of you are 100% cancer-free very soon!  I will keep praying for you every night, and for your mom, too.

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18 minutes ago, Quill said:

I agree. If chemo is the best course of action, then, well, okay - I will face it. But if I am well in the range of “not well recommended for chemo” then I will happily excuse myself from it. I have seen the effects of chemo up close and personal and I would much rather leave that a challenge uncronfronted if possible. 

On a positive note, cheap and fast genomic sequencing has allowed for leaps and bounds as far as matching the chemo to the tumor type. That's new- like in last 10 years new, if not less. They just didn't have the reference sets to do it well before, not to mention the cost and time to do that for each patient. The capability simply wasn't there. 

I pray you don't need it, but if you, or your Mom should have to go down that road, know that as far as finding the most appropriate type (because previously some actually turned out to be harmful with some tumor types and not simply ineffective) of chemo, you couldn't ask for a better time than now. And I'm sure they're leaps and bounds ahead of what I am aware of since retiring. It's really an amazing time in Oncology. When I started it could cost over $100,000 and I can't tell you how many hours to run a sequence. And now look at it. Crazy. 

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Put it in my calendar so I remember to send good thoughts for your surgery. Keep going! You'll get through it. Things are going to be OK>

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1 hour ago, StellaM said:

Put it in my calendar so I remember to send good thoughts for your surgery. Keep going! You'll get through it. Things are going to be OK>

Awesome! You reach Oct 30 a looooong time before I do, so I have like a whole day of good thoughts preceeding my surgery! ?

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7 minutes ago, Quill said:

Awesome! You reach Oct 30 a looooong time before I do, so I have like a whole day of good thoughts preceeding my surgery! ?

 

Honestly, you probably need the good thoughts just as much while anticipating! Everyone else can cover the day itself.

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Truly, if there is ANYthing I can do for you, don't hesitate to ask! In the meantime, you'll be in my prayers!

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UPDATE on genomic testing: NO GENETIC INVOLVEMENT! ? So “the girls” will be staying put although Lefty gets a penalty (lumpectomy). Also very happy that this will not be passed on to my kids! 

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3 minutes ago, Quill said:

UPDATE on genomic testing: NO GENETIC INVOLVEMENT! ? So “the girls” will be staying put although Lefty gets a penalty (lumpectomy). Also very happy that this will not be passed on to my kids! 

 

That is great news.  

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3 minutes ago, Quill said:

UPDATE on genomic testing: NO GENETIC INVOLVEMENT! ? So “the girls” will be staying put although Lefty gets a penalty (lumpectomy). Also very happy that this will not be passed on to my kids! 

That. Is. Awesome. Way to go BooKS! ?Sorry about the penalty though. Hopefully its as uneventful as possible. 

Still radiation too, correct? 

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1 minute ago, texasmom33 said:

That. Is. Awesome. Way to go BooKS! ?Sorry about the penalty though. Hopefully its as uneventful as possible. 

Still radiation too, correct? 

Yes, radiation is a definite. Chemo depends on testing the tumor and lymph nodes. Looks like I might get to pass chemo, but we can’t be sure until the microbiology sings. 

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Great news, Quill! I too have a note to keep you in my prayers on the 30th. I'm so happy you've been getting such positive news since the initial diagnosis. 

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Wonderful news!  Glad the surgery is soon and wishing you an easy surgery and quick recovery. Thanks for the update.  

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