Newly diagnosed invasive carcinoma stage 2

Nicksta

Hi there , new to this ....
Diagnosed with invasive ductal carcinoma in my right breast . Had a lumpectomy 3 weeks ago , 2 nodes removed and 18mm Tumor .Nodes were clear . Had satellite nodules in my margins which were not seen in any scan or during surgery, so margins were  not clear , so had a second surgery last week . Tomorrow is the day I get the next lot of results . Prognosis seems good but the last 4 weeks seem to be waiting for lots of results with always more results that I wasn’t expecting .
My left boob feels like it has lumps and am getting paranoid . Feels like from now on there will be suspicious lumps and can’t help but wonder if a double Mastectomy is just better for peace of mind ....surgeon says there is no need . It’s more about lowering stress levels and just wanting to make the best decision now . I guess tomorrow’s results will determine what is best depending on if I get clear margins . So many questions why not just do an MRI now even if it’s just to check the left breast ....anyone have similar thoughts , stories ??

Eastmum

Hi @Nicksta - welcome! Sorry to hear that you're going down this road - you've come to the right place for a supportive community with a ton of us who know exactly how you feel. 

The waiting is absolutely the hardest part and hopefully tomorrow, when you get some results, things will be a lot clearer for you and you will have a plan ahead of you. 

I didn't have the option of lumpectomy as by the time my invasive lobular carcinoma was diagnosed, it was too extensive so I've had a double mastectomy, which removed all the cancer, and I'm now going through chemo then radiation - for insurance and 'mopping up' purposes.

Being confident in your medical team is really important. There are plenty of women and men on here who have had a lumpectomy and no recurrence, and many others who have had a recurrence - even after mastectomy. There is no permanent guarantee either way. Definitely 'making the best decision now' is great advice.

Take your time, do all your research and make sure you feel 100% informed and confident about what you're going to do. You should absolutely request an MRI if that will give you piece of mind. I was very insistent about getting as much information as possible, and really went into my surgery and treatment plan feeling that it was the best way forward for me. 

Take someone with you - do you have a breast care nurse yet? - or record your appointments on a phone so you can listen back and feel that you've had all your questions answered - sometimes the info you get is so overwhelming. 

All the best for tomorrow! xxx

Nicksta

Hi @Eastmum . Thanks for taking the time to reply to me . Sorry to hear about your journey so far . I wish you strength and a positive outlook for each new turn on your journey . I hope the chemo is not causing you too many side affects that are uncomfortable . 
When I asked about MRI my surgeon said after core biopsy x3 , a lumpectomy and the  wide incision surgery in my right breast all within 3 weeks , would show up lots of lumps that may not mean anything . So it could cause more stress . I am just paranoid there might be more if something there .....I guess I have to wait to see what tomorrow brings . I will talk with my breast  care nurse after tomorrow . Thanks again for answering me . Wishing you all the best xx

beccabecca

Hi Nicksta, so sorry to hear that you are going to go through cancer treatment. 
I agree with what eastmum has said, be confident in your team, ask lots of questions, take notes & someone for support.
I would be after an MRI, in my case it was the only thing that showed by tumor which was over 140mm! Not picked up on mammograms or ultrasounds. But MRI showed it's shocking size. I had no choice but to have a mastectomy on one side, but in the few minutes I had to decide I chose a double, didn't want to risk getting it in the other breast, but that was just me, esp as other tests showed nothing, I didn't want to waste my time & money on regular mammograms that were useless & expensive 

Nicksta

Hi beccabeca, 
thanks for your reply . Wow i can’t believe what I read in your post .
I am not sure how long ago this was for you but I wish you the best for your  treatment .
See mine didn’t show up either on mammogramme .... something did on the ultra sound . I don’t understand why MRI isn’t a  given ( if patient is willing to pay ) as I understand it’s not  covered my Medicare and it’s expensive. As my cancer is breast cancer and no nodes involved and hormone positive the prognosis seems good so far but I want to make the best decision now to minimize the chance of any cancer coming back . 
Did they make it hard for you to get the MRI ir did they agree it was a good idea I wonder .

beccabecca

Hi Nicksta, I had my expanders changed for implants 3 weeks ago, after 18 months of non stop treatments & operations, may have another operation to go - 4 so far!
My surgeon wanted an MRI to get a better idea of tumor size. I think it cost me close to $500, but then again so did the useless mammograms 

Nicksta

Hi beccabecca, 
sorry to hear . Sounds like a difficult journey for you . Hope things improve for you . 
Will pop the question tomorrow . 
Wishing you all the best , thanks again for responding x

kmakm

Hi Nicksta. Your diagnosis and early treatment is pretty much exactly the same as mine. I had a 16mm tumour in my right breast, a wide local excision with a sentinel node biopsy, no spread to the lymph nodes, no clear margins so a re-excision a week later that found a 4cm dogleg of DCIS.

I feel your pain re the waiting (we all do, it's the absolute pits). I was diagnosed in December, all the doctors disappeared for a month and the multiple public holidays delayed test results and there were other complications.

Taken at face value, there would have been some radiation therapy and that would have been it. However I have a bad family history of breast cancer. My mother had it at my age, and my sister died from it two years ago. So after a test to see if chemo would be curative, I had four months of that.

From my very first meeting with my breast surgeon (which was my diagnosis) a double mastectomy was in play. My family history, my responsibilities (I'm raising my sister's children with my own & caring for my father-in-law) meant that I met no opposition from my surgeon; in fact he raised it.

It was a bumpy ride from there. Not an easy decision for me, to remove my breasts. It's a mutilation. There were a variety of complications meaning my journey to the decision was beset with deep upset. I had counselling, which helped. Many conversations, much thought and sleepless nights later and I went ahead with it.

Seven weeks ago I had a double mastectomy & DIEP reconstruction (I didn't want to be flat). It was a nine hour operation and so far my recovery has not been entirely smooth. I really miss my nipples, the myriad of sensations they gave me.

It turned out there was more DCIS in my right breast. Neither this nor the DCIS discovered in my re-excision ever showed up on any mammogram or ultrasound. My breast surgeon was not keen on me having an MRI. It would have cost me a fortune as I didn't qualify for a subsidised one (absurd), and he felt that because they show absolutely everything, they can lead you down a rabbit hole of worry and overtreatment. I would have been fine to insist if I'd wanted to have one (he made that clear), but given the course of action we were contemplating, it was a moot point.

Has your surgeon explained to you the statistics, the odds of you developing another breast cancer, or a recurrence? It's a massive decision to take. Do your research, ask all the questions. It's important not to rush into it, though I completely understand the urge. I found writing down the reasons helped clarify my mind.

Once you are sure of your position you can have a more in depth conversation with your surgeon. Some doctors are more open to prophylactic mastectomies than others. Ultimately you have to do what's right for you. It's your life.

I get your worry and paranoia, we all do. A mastectomy reduces your chances by a lot, but never completely. In breast cancer there are no guarantees. Hang in there, and let us know how you get on. K xox

Nicksta

Hi kmakm, 
Thanks  for replying on my post . I am not really sure where to start . I am sending you love and strength . Don’t know how you had time to reply with everything you have going on , so I really appreciate your time taken . 

I guess I just have to wait and see what happens today . No point in making a plan until a more final result is given . 
I can’t imagine  what it was like for you over the Christmas period , all that pointless waiting . 
Sending you all my positive thoughts .  Wishing the best for you . I will see what I am dealt this afternoon at 5 and go from there . 
I will keep you posted xxxxx 

kmakm

It is absolutely sensible to not cross bridges until you come to them. One day at a time is a mantra round here!

Thank you for the positive thoughts. I'm sending some right back. Good luck today. K xox

arpie

Hi @Nicksta

All the best for your results today - fingers crossed the margins are now clear with the extra bits being tested.   If it isn't in the nodes & the margins are clear - you may well only have radiation (like me.)  

The waiting is ALWAYS the hardest bit to do .... you mind plays games with you.  Try not to overthink it all.  It is what it is - then it is up to your team to  map out the next few months for you.

If you can, ask if you can record the conversation with your specialists on your phone (and any other ones) for reference later on.

My lumps were found in late Nov & I had yet another mammogram which once again, didn't show it (even tho my GP stipulated exactly where the tumours were!) ...  (and none of the previous ones picked it up either, as I have dense breast tissue) ... see this post here & feel free to fill in the survey:  http://onlinenetwork.bcna.org.au/discussion/18943/have-your-say-survey-on-breastscreen-australia-s-position-statement-on-breast-density#latest

My ultrasound in early Dec was inconclusive, so a core biopsy was done between Xmas & New Year & came back as positive to cancer on Jan 5.  I had my 'breast conserving' surgery on Jan 15th & radiation in March/April & am now on Letrozole.

All the best, thinking of you xxx

Nicksta

Hi Arpie, 
thanks for your message . You are so right and I will record the meeting today . 4 more hours to stay busy ! 
Hope you are doing well and love to hear how you are going xxxxx

JoeyLiz

Best wishes x

kezmusc

Hi @Nicksta,

Welcome to the forum.  As you've already found out there is a huge amount of support, information and experience on here.

Waiting just sux.  The endless cloudy fog until you know exactly what your dealing with is unbearable at times.

My breast tumour could not be found on any mammograms or ultra sounds (I had four and two u/s) either.

 We chased the rotten thing for a month as I wanted the lumpectomy if at all possible and we knew that it was already in the nodes as that's where I had picked it up.
The MRI was the only way they found it as well and even with the exact location from the MRI it was pretty hard to catch with the core biopsies!  
So I ended up with lumpectomy and full node clearance, re excision, chemo and rads.

You do become a bit paranoid from now on I guess.  Every lump, bump, ache or pain has me running off to the doctor thinking it's IT back. 

Hoping your results are good ones today.

Let us know how you get on.

xoxoxo

Nicksta

My pathology results  came back . Margins are not clear . The majority was , but there is a 2mm DCIS and a 4mmDCIS . So re excision surgery booked for this Friday afternoon . This is the third surgery now . 
THe disciplinary  team met last week before these results were known . They don’t believe chemo will be a treatment for me . Because it’s stage 2 invasive ductal carcinoma , not in my ducts ,very hormone receptive and HER2 negative . So the plan then was radiation and hormone treatment . So we still need this surgery to present clear margins to start a treatment plan.
 I was first diagnosed 4 weeks ago . My prognosis is good but I keep going into these unknown spaces of time where it all doesn’t feel real . It’s hard to sleep some nights , the mind starts playing games . Most times I am positive . I am a single mum ( 12 year old daughter ) I  work in my own business . Daily life goes on and that is why I try to stay positive which is hard when you are waiting constantly for the next results .  
Anyway now hoping third time lucky for clear margins . Thanks everyone for your support it is really heart warming . Xxx

onemargie

Hi there @Nicksta great advice from @kmakm @beccabecca and the other ladies. I’ve highlighted these lovelies as I too have had a double. Diagnosed may 16 aged 43 with stage 2 a grade 3 (3cm tumor) triple negative breast cancer. Had  8 nodes taken all clear and scans all clear too. Had 8 rounds of chemo. I took the left boob off first I could of just had the lumpectomy surgery but as a nurse I’d seen too many patients have to go back for more surgery and I couldn’t be bothered with that (nurses aren’t very good patients lol) and I also didn’t have to have radiation either because I took it off (logistical nightmare for me in Brisbane and the less treatment the better was my opinion) then 6 months later took the right one off as a preventative as my guts told me too.

And I’ve always had dense lumpy breasts which I just learned  recently dense breasts can increase your risk of breast cancer. Wish I’d known that earlier. I didn’t want to always be worrying about the other boob with mammograms etc either. I trusted my guts thats why i did I what I did. Surgeon told me too it wasn’t necessary but It’s a very personal choice and one only you can make and like @Eastmum says everyone is different. I’m just on the very long wait list in qld for recon I’m so used to not having tits now sometimes I don’t know if I’ll even bother anymore. 

 I have no regrets with my decision and I’d definitely get the MRI if I was you that again is your choice and should be respected by your team. There are many on here happy with just the lumpectomy and treatment which is fine too. You will know what’s best for you but please trust your gut as well as Your team. Please keep us posted how you go on Friday. Biggest hug. Margie xx