Calling all Trip Neg Stage 1a <6mm tumors

SusanHG

I wanted to find all those triple negatives out there that were caught extremely early to compare treatment decisions.  I am having a hard time deciding what to do about chemotherapy.  I had a 3 mm. triple negative tumor Grade 2 hidden inside a 4 cm.+ area of DCIS.  If I have found you, please share your own treatment decisions, reason for choosing this path, and date of diagnosis.  Would love to hear from long-time survivors out there!

LRM216

I hope some in the same situation come along to help you out as I was 1.2 cm IDC with a small amount of DCIS in my margins only, so I can't really tell you.  But I would suggest that you hop on over to another board that I am on and ask there, as I know there are gals there with the same situation - it is TNBCfoundation.org.  Go to the Newbies section and post the same post as you did here.  Also on the DCIS forum here - go to the thread that is titled "Continuing the story.... DCIS" posted by Beesie.  She is a wonderful source of any info regarding DCIS and a small foci of invasive cancer.  She is an absolutely amazing woman that could go toe to toe with any onc!  Check that one out too. 

I'm sure you will get all the info you need.  I wish you all the best.

Linda

Sugar77

Susan - hi, I fall into this category.  Mine was 3.5 mm and grade 3 in with DCIS (high grade with comedo necrosis).  Mine was found when I had surgery to remove atypical ductal hyperplasia to rule out any DCIS lurking nearby, which would have been the worst case scenario.  However, to everyone's surprise, there was DCIS but also a high grade invasive tumor.  I then had to have a second surgery to check my lymph nodes and I had the sentinel node biopsy done.  It was clear. I was offered chemo, which was another surprise, because I thought rads would be it.  My onc gave me the option so I decided to give it a try knowing I could stop at any time.  It wasn't too bad so I kept going and completed four rounds of TC.  

I know there are other women who fall into our category because I've conversed with them on other threads.  Let me see if I can dig up the titles of the threads for you.  Feel free to send me a PM anytime! 

Sugar77

 

Susan, further to my post above, I've done some searching on where I've posted and have come up with these three thread titles that might be of interest to you. 

 

Treamtent for Triple Negative and very small tumor

 

anyoneTN with DCIS and microinvasion with no chemo

 

triple negative BC

SusanHG

Hi Sugar,

Yes, I've contributed to those other threads.  It seems i have only found five of us.  There has to be more!  I figured if i put out a "calling all" thread I would attract attention!

Hi LRM216,

Thanks for the extra info and , yes, I've found Bessie to be a wonderful source of info.  I will check out those others!

Susan 

Sugar77

Susan - hopefully some of the others will find this tread, too, as it would be nice to connect with others with the same size of tumours. 

Sherri 

Trishette

Hi Susan -

 I am in a similar situation to you; only I can't assist with any guidance since I think you're just a little ahead of me...  I also am trying to make the chemotherapy decision.  I had multiple foci of IDC of 1mm to 3mm, within a 14 cm area of DCIS, stage 1 also. My onc and a second opinion onc both recommended the chemotherapy because of the multiple foci, my Ki67 of 73, and the TN.  So the more I think about it, the more I think I'm going to go ahead with it.  I'm don't think I will ever regret having done the chemo (once I've actually gotten through it, of course), but I think it's possible that I may regret not having done it. Where are you in your decision now?

Peace, and good luck! 

starling

Hi there, I am in this category as well. My 7mm tumor was found on a routine mamogram, no lump anywhere. No one expected TN, so I was told "oh, quick lumpectomy and mamosite rads for a week and you;ll be done." Well, TN diagnosis changed that. I had lumpectomy, 3 rounds of dose dense A/C followed by 3 of Taxol. Then 19 treatments of super rads. My chemo ended on Nov 3rd 2010 and rads over on Dec 23rd. I've had a clear mamo and MRI and my heair is growing back nicely. I never thought it would end but I finally feel like my life is returning to normal! Thanks for starting a thread for those of this with this particular diagnosis.

SusanHG

Hello Starling and Trishette,

Thank you for sharing and letting us know you are out there!  From what I've found from all the doctors I've talked to and all the research I've done, it is very rare to find a tiny TN tumor, which is why most of them are found by chance.

Here is where I am with my decisions:

I decided to get three opinions from three surgeons and three oncologists.  My first onco gave me the numbers for reoccurence, both local and distant without explaining this to me.  Looked pretty bleak,so my decision was clearly pro-chemo at that point.  I ordered wigs, hats, and let all my family and friends know.  That onco then decided to send me for a second opinion at Roswell Park Cancer Institute in Buffalo (not far from my house).  I arrived there and since they redo everything, including the pathology report, I found that my prognosis wasn't as bad as I had thought.  My DCIS was mostly solid except for right around my 3 mm. tumor.  My tumor was a grade 2, instead of a grade three.  My first surgeon, who had done my lumpectomy, was hesitant to offer me a re-excision.  When I arrived at the institute, they couldn't comprehend why i wouldn't try to save my breast.  So, I am opting for a re-excision, then if this doesn't work then I will finally do the mastectomy.  i will then know I tried everything to save my breast.   This second surgery said that local recurrence rates are exactly the same regardless (6-7%).   My surgery is on tuesday, so wish me luck!  I have my own fingers crossed.

I went to both a medical and radiation oncologist there at Roswell and was completed reassured, both in my choice to save my breast and receive their special radiation technique that completely avoids the heart (unfortunately a small part of my left lung will be killed, but since I am only 42, should be fine) and in the decision that chemo would defintely not be warranted in my case.  The onco there gave me the real numbers for a grade 2, 3 mm, TN tumor.  I guess in this case there is only a 1-2% chance of distant recurrence, a 2% chance of death by other causes, and chemo would only reduce the risk of distant recurrnece by 50%.  Since i have a potential 40 more years to live, risking side effects such as premanent neuropathy would  just not be worth the benefit.  Again, I am haivng my fingers crossed that I am not that one out of 50 that this will happen to, but nothing in life is that certain.  She did suggest that since i am not having chemo that I do two things:  Lose 30-40 more pounds to get on the low end of my weight range (I've already lost 30!)  i.e. under 140 pounds on a 5'7" frame!  This will be difficult...Also, she wants me to follow a diet of less than 20% fat.  Both factors have been significant in just TN cancer, not estrogen receptor cancer.  So, this is what I will be doing over the next few months.  If by some strange chance, and we all know that TN can be strange, they find more invasive cancer upon my re-excision, then I will be having chemo after all.  It sounds like 3 mm. was this particular doctor's comfort limit.

 I did go to another highly recommended breast clinic, and they confirmed everything I was told at Roswell, so I was reassured.

So that's my story and will be working on treatment probably through June.  Good luck to you both, Starling and Trishette and keep us posted.

Susan

 

Sugar77

Susan - good luck with your surgery on Tuesday!

Starling and Trishette - welcome to the thread. So glad to see others with small TN tumours posting as well. 

sunflowerE152

I fall into your catagory, but for me it was a 2nd cancer in the same breast.  The first one was 8 years ago, it was ER+ and I had a lumpectomy, radiation, and tamoxifin. 

I feel very confident in my oncologist who I have used both times.  I think he is smart and up on the latest procedures.  This time, he told me that since it was TN, it responded well to chemo and anyone would recommend chemo no matter the size.  Like you, I was < 3 mm; however it was multi focal. 

As far as the chemo goes - I finished 4 rounds of TC last Thursday.  I have not been sick at all.  I lost most of my hair the first round, the 2nd round my mouth was very sensitive, the 3rd and 4th round I have had some tingling in my finger tips and feet.  Nothing has been disabling and I have been able to work (teach) through it all.  My onc described it as a kinder gentler chemo than years ago. 

Having had BC twice, I wanted to do everything I could to insure not going through this again.  If you can save the breast, I definitely would do that,  For me, the mild lymphadema that I have developed b/c 14 nodes were removed this time, and facing the reconstruction surgery is the most difficult.  I will tell you that I thought radiation was very easy 8 years ago, but it has complicated the reconstruction process. 

 Good luck to you.

SusanHG

Thank you Marcia for your feed back.  So sorry you had to go through this again!  From what I have been told, every situation is different, as every oncologist's viewpoint is different.  I have seen so many people doing so many different things with their treatments, I guess it all comes down to personal choice and comfort zone.  I am so glad chemo went well for you.  I've heard TCx4 is so much better than the ACT regimen which is what I was originally supposed to have, so if things change in my case, I will be opting for TC if I still qualify.

Thanks for the feedback and for joining our little, slowly growing group.

Susan

fmakj

Guess I might as well chime in even though mine was 8 mm.  It was found by calcifications on the mammogram.  Actually there were 2 foci with the 8mm being the largest.  My oncologist did not recommend chemo for me and the 2nd opinion onc. agreed.  I really wish that I had had the chemo, but have been focusing on living life right now!

Was diagnosed on June 1, 2009, had a lumpectomy and an SN Biopsy done at the same time.  Also went through whole breast radiation and 5 boosts.  I am still here and working on the weight loss - which will take a bit of time!

Edited for typos

SusanHG

Welcome Mary Louise!  From what I have read from the NCCN guidelines, for tumors 6mm-1 cm, chemotherapy is "considered".  It isn't until you get to 1 cm. that it is "suggested".  Sounds like you went through the same treatment I am going through, except I need a re-excison to get clear margins.  I am also trying to lose some more weight.  I've lost 30 pounds so far, but now it is getting hard!  It seems my anxiety has gotten better, so my appetite has come back (along with all the cravings   )  When I went to speak to my first oncologist just after I was diagnosed with DCIS (she is a friend of a friend), she told me two things:  first, cut out all non-organic dairy and meat and second, lose weight, but this will take time.  When I went to visit my present (second) oncologist, she told me the most important thing right now is to lose as much weight as I can, as close to the bottom limit of my weight range as possible, and try to follow a diet of 20% fat or less, so I  am taking these recommendations very seriously.  I am sure there are many of us TN patients out there doing the same thing right now.  Thanks for sharing your story and keepus posted on your weight loss progress.

Susan

SusanHG

Hi again, Mary Louise,  I was just checking out your profile.  I notice you are participating in a couple weight loss and exercise threads.  I  guess I better check these out as well!

Susan

Sugar77

Susan - there is also a thread for exercise/weight loss called TN 10 pound take off you might also want to check out.

Mary Louise - nice to see you on this thread! 

fmakj

Thanks Sherri!

Susan,  try out the website loseit.com  it is a free site where you can track all of your nutrition and excercise.  We have a Wednesday weigh-in thread that sprouted off of the Posting our daily excercise.  So far I have taken off 16 pounds since Christmas, but managed to get my blood pressure in a better area with the excercise thread over the past year and a bit!  Join in anytime. 

I don't think that you have done RADS yet, so make sure you tell them that you are losing weight.  They may want you to stop losing while getting rads!  Good Luck with your Surgery! 

SusanHG

Oh I did not realize that about radiation.  That is good to know so I can plan accordingly.  Thank you , Sherri and Mary Louise.  I am defiitely going to join in to both threads and check out that website loseit.com.  Nice that it's free!  16 pounds is great, Mary Louise.  Thank you for the luck!

Susan

Sugar77

Susan - I hope all goes well with your surgery today.

SusanHG

Thank you for thinking of me, Sherri.  My surgery was much easier than my lumpectomy.  I am in very little pain and walking around the house.  I can even lift my arm.  Now, let's hope that the pathology results come out just as nicely!  I am going to take this time to catch up on reading my magazines and getting some much needed sleep and of course not being too anxious about the results

Susan.

Sugar77

Glad to hear all went well Susan. I know what you mean about anxiety for results.  I'm having a 6-month repeat mammogram on my good boob next week because they are watching some calcifications.  I'm already getting anxious!

Sherri 

SusanHG

Well, I wish you luck with that, Sherri.  Hopefully will just be normal calcification.  Sometimes the waiting can be the worst part, can't it?  I fly right through surgery and the only thing on my mind is the pathology report!  Isn't it rare to have TN in the contralateral breast? I think I read that somewhere.

Susan

SusanHG

Just wanted to share with you all the results from my re-excision last week...No abnormal cells found!! Yippee!  I guess my body killed them all during the healing process of my first lumpectomy.  Now onto 7 weeks and one day of radiation.  Going for my set-up next week.  We will be celebrating tonight.  Finally some good news!

fmakj

Congratulations!!  Always great to hear some GOOD news!  Enjoy your celebration!

SusanHG

Thanks so much, Mary Louise.  It is nice to share good news for a change!

Susan

Sugar77

Wonderful news Susan...go celebrate.

I'm anxiously awaiting the results of the 6-month recheck mammogram on my good boob that I had done yesterday. They are watching some calcifications that looked to be benign but want to monitor. So....the wait begins.

starling

So happy for you Susan! Thanks for sharing your good news!

Sugar - we are waiting to hear good news from your recheck as well! Please post as soon as you hear!

SusanHG

Thank you, Sugar and Starling.

Sugar, try to get through this waiting period.  I had a bad 24 hours the day before last.  It was horrible!  Hope it will be OK.  We are praying for you!

Susan

Kelley41

Susan,

I see you are from Kenmore NY....I live near Rochester NY on the West side near Leroy.  I had my care done at Strong Cancer Center.  My tumor was .9cm, grade 2.  The only way they found it is because they were going in to remove a "suspicous" area and once removed and tested, it came back as cancer - TN.  I had chemo TCx4 and had a double mastecomy.  The only reason that I opted for the double mastecomy was because I did not like the fact that after having a mamo, ultrasound, and a MRI .....nothing picked up the tumor until they went into to remove an unknown area.  3 years prior to that, I also had a suspicous area removed that turned out to be "nothing".   Cant help but wonder if that was the beginning....

SusanHG

Hi Kelley, i guess we are neighbors!  Thanks for joining us and sharing your story.  It is scary when they don't see these things on mammogram and MRI.  Mine showed a much larger area on MRI than it actually was, but it didn't discriminate between DCIS and IBC.  My guess is that it was probably still microinvasive at the time that I had my MRI, about a month before surgery.

I know I have been scaring a lot of friends and relatives after they hear my story.  Some haven't had a mammogram in a couple years, not thinking anything of it.  We never expect to have cancer, but when we do, our whole perspective changes.

I have switched over now to Roswell Park Cancer Institute.  I feel better knowing I am at a research center since many doctors don't  quite understand what to do with TN.

Susan

starling

I noticed that several of us with smaller tumors are also Grade 2, which is a little unusual for TN - at least so I have heard. Anyone else grade 2? Just curious if there is any trend or is this is just a fluke.