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Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Posted by Dolphin on Mar 8, 2019 12:56 pm

Hello,

I haven't yet written on this site, though I have been greatly appreciative of the discussions and info.
Hello!
I was diagnosed with early stage invasive BC.  estrogen / progest +  , Her2 -   and I  had surgery over a week ago- 2 lumpectomies in R breast. Both lumps were very tiny, and found by me- not seen on any mammogram- I have dense breasts etc.... So now the pathology report has come in after surgery- always a bit of a challenge to read 
and truly understand. I will meet with surgeon next week to hear what is what , and what the next recommended step will be. It seems on the report that margins are clear,
though it seems that of the two lymph nodes removed one has "miro metastases" N1mi, and as I understand there are many factors to be considered when determining
whether chemo should be given or not , or just radiation and then a hormone blocker med such as tamoxifin or letrisol .... (sp?) If I am understanding correctly, more definitive staging happens after surgery- I think it says I am 1b- will look again. There is so much to learn...and I am the type of person that needs to learn and research, as I feel I have to be the biggest advocate for my own health. 
 
Anyone else out there have similar experiences/ diagnosis  ? I hope not to need chemo, but  I have yet to find out if this is to be a strongly recommended treatment or not....Ultimately trying to let go of any preferred course of treatment-  chemo does scare me- ultimately I want to live and be healthy for a long time, and I am a single mother of a beautiful teenage son. I am also interested in alternative approaches to healing as well as allopathic(western medicine).

What a journey so far.....I am of the mind that there are silver linings to this- I need them :-) Hopefully I will be attuned enough to recognize them when they appear!
Thanks again to everyone sharing their experience and offering inspiration and positive energy. 
Dolphin (can't wait to swim again)

Re: Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Posted by Lianne_adminCCS on Mar 8, 2019 1:52 pm

Hello Dolphin‍ 

Thank you for sharing. I am glad that you have found the site discussions helpful thus far.
I was diagnosed with a very similar diagnosis in Setp 2010.  IDC, stage 2 Grade 3 ER/PR + and HER2 - . We knew essentially at the biopsy that I already had lymph node involvement so the axillary dissection of 11 nodes removed ( 3 cancerous) was done with my lumpectomy. I did have chemo and radiation and started on Tamoxifen and moved to Letrozole ( an AI - aromatase inhibitor) and now on a different AI - Exemestane.
Staging and grading can be very confusing as is trying to read a pathology report but I think it is important to have a copy of the path report and learn, as you say, as much as you can - knowledge is power.
We have a webcast on this site that explains just that. You can find it at the top of the list at this link:
https://cancerconnection.ca/webcasts

From cancer.ca, here is a list of possible questions for your oncologist and/or surgeon regarding the report:

http://www.cancer.ca/en/cancer-information/cancer-journey/your-healthcare-team/questions-to-ask/pathology-and-staging-questions/?region=bc


Here are some questions related to treatment:

http://www.cancer.ca/en/cancer-information/cancer-journey/your-healthcare-team/questions-to-ask/treatment-questions/?region=bc

With treatment recommendations, there are so many variables . I say this as people can tend to compare to others diagnosis and treatment but there can be many reasons why something is recommended for one and not another or visa versa.
. Bring your questions with you to your appointment and if possible, have someone with you to record the answers. Ask them again if you feel like you don't understand. You want to leave that appointment felling that you have the answers needed to make informed decisions.

Congratulations on getting past this first step.

Let us know how your appointment goes next week.

Take care

Lianne
PS - swimming days are ahead of you :)




 

Re: Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Posted by Dolphin on Mar 8, 2019 2:12 pm

Hi Lianne,

Thanks for the info/links, and for your response. Congrats to you! Almost 10 years on! Amazing! 
Day by day..... Yes will keep you posted.

Kindest Regards
 

Re: Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Posted by Kims1961 on Mar 8, 2019 10:13 pm

Dolphin‍ You will swim again!!  I even swam during chemo and radiation.  Silver lining to chemo was that i didn't need to wear a bathing cap anymore!

I have ER+, HER2+  Invasive Ductal Carcinoma - stage 2.  I did have 2 lymph nodes with micro metastasis but the real issue was that the margins weren't clear.  As such, I had to undergo chemo ( 6 rounds) and 25 radiation treatments.

You are on the right track by looking after yourself, keeping a positive attitude and finding joy.  Eating well, exercise and building supports were so key.  There is also a great book ....Silver Linings ....http://www.thesilverpen.com/

You can download a copy of the book for free - written by a nurse in the US who is diagnosed with breast cancer.  More of the American experience but some good suggestions overall.  As well - the cancer.ca website and publications listed on the website:  http://www.cancer.ca/en/support-and-services/resources/publications/?region=on

Kim






 

Re: Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Posted by Dolphin on Mar 8, 2019 11:14 pm

Hi Kim,

Thanks for  sharing about your experience,  and for the links and all the positive words and encouragement- Congrats to you for getting through everything you had to deal with. You sound like you are doing very well,
And I like your attitude- very inspiring - I will keep that image of you swimming and smiling in mind.

Dolphin

Re: Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Posted by Dolphin on Mar 8, 2019 11:32 pm

I forgot to ask if anyone had swelling under armpit after sentinel biopsy? I have a small pocket of swelling , and wondered how long that might last.
I am doing some exercises....Curious what other people experienced and for how long before things returned to "normal" .

Thanks again !
 

Re: Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Posted by Essjay on Mar 9, 2019 8:55 am

Hi Dolphin‍ yes I had quite some swelling in my armpit. Felt like an orange under there. It took some 6 weeks to go. I had a burning sensation down my arm too which was agony and took about 8 weeks to go. I have had a lot of trouble with scar tissue and developed cording (web auxiliary syndrome), both of which are being treated at the lymphedema club mic by massage. This is despite doing the exercises religiously! Just my bad luck!

whatt I learned was that it’s best to raise concerns and get checked out early - I need the scarring reduced and the cording sorted for my radiation treatment. I recommend self massage too just as soon as you feel able - it’s amazing how this breaks up the scar tissue and helps your breast feel less lumpy and hard. And bio oil on the scars to soften them just as soon as the stitches come out.

Good luck!

 

Re: Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Posted by Veryhappilyretired on Mar 9, 2019 12:02 pm

My surgeon actually recommended going to a massage therapist to reduce the tethering where my surgery was.  It helped with the scarring as well.  If you try this, you would need to time it so it's after you're not so sore anymore, and before radiation.  Good luck!

Re: Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Posted by Dolphin on Mar 9, 2019 5:20 pm

Thank you both Essjay and  Veryhappilyretired- I will see surgeon on Tuesday and of course mention and show them what is happening in underarm.
My breast , with two lumpectomy - had tiny lumps in two different quadrants- actually seems pretty good, but my arm pit is lumpy and swollen now-
like there is one of those dishwasher packs inside my armpit. I wasn't too sure about when to start massage...and doing some exercises too, wonder if there is a particular exercise for getting that swelling down in armpit? I am trying arm up in the air and squeezing hand to create pumping....not sure. 
Glad to hear you are both doing all right it sounds like- sorry to hear you had prolonged issues Essjay, hope they are near resolved? 

Thanks again for sharing 
Kindest Regards
Dolphin
 

Re: Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Posted by Dolphin on Mar 12, 2019 6:54 pm

Hello Again,

Well I have met with my surgeon and received the lab report info from surgery pathology. I am now stage 2- as one lymph node is positive
with "micro metastaes" a very small- 1mm seen- so now they want me to have a bone scan and then meet with oncologist - as it is not entirely clear what next steps are
for me yet. So a little deflated by new staging number- I realize it is just a number- but also the need of the scan- but I guess, of course, it is better to know everything. 
Anyone have a situation like this? I am encouraged by many people I read where they talk about their situation and how they got through it etc.....
I wonder will there be a time ever where I am free of this, or will it always be just managing it and "surviving" for how long..... Forgive my kind of grim tone,
feeling a little blue and lost today in the mighty river of "C"........

Dolphn

Re: Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Posted by Cynthia Mac on Mar 13, 2019 12:25 pm

Dolphin‍ , I’m sorry to see that you’re having a bad day due to your recent news. Stage 2 (2-?) is still “an early catch” and knowing this number has helped your medical team choose their recommendations for your individual situation.

When my Dad was going through his treatment, the staging system was being re-vamped, and all we know is that his cancer (lung) was somewhere between a 2a and a 3a.

Today is a blue day for you, so try and be kind to yourself. Hopefully tomorrow will be a blue sky day for you.

Re: Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Posted by Minus2 on Mar 13, 2019 1:25 pm

Hi Dolphin‍ , 
Sorry to hear you were thrown a curve ball with the staging.  When I was first diagnosed in May 2016 with DCIS and IDC in both breasts, my surgeon was very confident the IDC was Stage 1 and that chemo and radiation would not be required - all based on imaging, of course.  So, at my follow up appointment with her, the post surgical pathology, which is always more accurate, indicated the IDC tumour was slightly larger than the imaging indicated at 2.0 cm, meaning I was on the cusp of Stage 2, based on the staging guidelines in place at the time.  And that meant a referral to a Medical Oncologist to discuss the benefits and risks of chemotherapy.  I was so upset with the new direction I seemed to be headed.  It had taken me weeks to begin to trust the Dr. and develop a positive mindset;  I was so unprepared for the what if's.  No one had explained that there are sometimes discrepancies between imaging and post-surgical pathologies.  And then when I got home, I got a call from the hospital - I had been referred to a Radiation Oncologist as well.  That had not been mentioned and you could have knocked me over with a feather.  It took some time to re-group and I shed a lot of tears waiting for those consultations.  As it turns out, the surgeon's original staging and treatment plan did not change; the referrals were her erring on the side of caution.
Things that helped were talking to survivors of every stage - this site is awesome for that!  And I have an Aunt who is a 30 year Stage 2 survivor - I think of her every day.  She's now 76 years young and has not looked back since her diagnosis.  Remind yourself often that Stage 2 is a very early catch.  The other thing my sister in  law told me - she's survived 2 primary cancers now - is that my story is unique and while the Dr.'s have developed staging and other protocols, I am unique and another person's story is not my story, even if there are similarities.  
Do you know when you are going for your scan and your next oncology appointment?  Hoping better and brighter days are yours as you wait.
 

Re: Breast cancer stage 1b lumpectomy 2 sentinel nodes removed now what comes....

Posted by Dolphin on Mar 25, 2019 10:57 pm

Hi
Thanks for the replies...A lot has been happening in life....Please forgive my late response as I heartily appreciate all of the responses I have received so very much.

I met my oncologist today. I ended up having a "micro met " in one node only after SNB. The oncologist today seemed to suggest that chemo is not going to benefit me too much, maybe increase my overall survival by 1 %,
and if I have the oncotype dx test- then I better be prepared to do chemo, because what will you do if you get a high score? He gave me lots of stats of survival rates etc....and said I was "low risk" as both tumours in my breast were under 1 cm, and I am in my 50s and I am hormone positive....Yet , this  oncotype test was something I thought would be so helpful, now I am hearing that if I get this test , which the government pays for- and if my score is low- 
 then it isn't telling me anything new, and if my score is high or intermediate than I had better be ready for chemo , but that the rate of benefit of chemo  would still be quite low, maybe 3 or 5% more? Maybe I got that number wrong. My friend was with me at the appointment.
Head spinning stuff as many of you know. Trying to understand all the stats etc..., especially when you are in this quasi grey area of a micromet , so a little confused.

I almost want to celebrate a tiny bit- because really I do not want chemo- Yet- I want to live as long as I can - but live well with quality- and I know chemo can be hard on a person too.

Wondering if anyone out there had a similar situation? I am curious if you had a micromet  in a node , and if you did this oncotype Dx test,  and still said no to chemo, or said yes? I also wonder if I should consider speaking with one other oncologist....

In all my research so far, it never seems too clear how to treat women with early stage BC and with 1-3 nodes of involvement with a micromet-  along with hormone + status, and her2 -
we are in a slightly grey area of-  how do we best treat these women - besides hormonal therapy and rads if they had lumpectomy- should they be given chemo or not.
And there are many factors to determine this....Ahh
Okay , well i will sign off as I am clearly overloaded.
I think a good nights sleep is in order. And I thank you all for all that you do in writing and supporting people- it is Fantastic!

Dolphin