Signet Ring Cell Carcinoma of the Breast

Eli86

Does anyone know anything about, or been diagnosed with, Signet Cell Ring Carcinoma of the Breast? 
I was diagnosed a month ago with 2 primaries (mulifocal) and one is an 5mm IDC but the other is a 25mm SRRC in the same quadrant. I’ve only been able to find a handful of journal articles at it, which all say it is really rare and aggressive with a poorer prognosis than IDC, but I can’t find any forums with anyone else who has it. 
I’m having sentinel node biopsies in a couple of days for staging, but what I really want to know is the statistical likelihood of it reoccurring in my contralateral to help with deciding about a prophylactic mastectomy when the other on goes.
Any info greatfully received!

onemargie

Hi there @Eli86. So sorry that you’ve joined us but welcome to our crew. I’ve never heard of the type of bc you’ve been diagnosed with and you will be guided by your team in due course. At this stage just take a day at a time which I know is hard but once you have a plan of attack you will feel better. I had triple negative breast cancer in May 2016 left boob stage 2a grade 3 (3cm tumor) No lymph nodes involved all scans clear. 8 rounds of dose dense chemo (4 AC and 4 paclitaxol 2 weeks apart) It’s a less common bc too. I took the left boob off so I only had to have chemo and not radiation as well then took the right one off as a prophylaxis as my guts told me too. 

Everyone is different and many bc surviviors keep a boob or both and lots do what I did, and lots have reconstruction and many don’t. It’s a very personal thing. But my advice is wait and see what the oncologist and your surgeon says then make your mind up from that. I will tell you this though. If you want a recon discuss this with your surgeon as some do immediate recon and some don’t. Also if you live in qld and need to use the public system for your surgery and don’t have immediate recon the wait times can be up to 5 years. I’m still waiting. 

If you have private insurance make sure you find out your out of pockets as these can be expensive or find a surgeon who doesn’t charge above the AMA fees. You can also go intermediate for surgery if you get the right surgeon. But this is all here say for now until you get your plan of attack. Don’t overvthink it. Try not to google too much as there are updates all the time with treatment plans and some of the info you read might have changed or might not be up to date. The waiting is the worst but once you get a plan you will feel better. Then you can sort your life and family around it. How old are you love? Do you have any family history?  You may qualify for the gene test too if you so ask your oncologist about it. I did as I was 43 when diagnosed and no family hsitory and had TNBC. I was negative. You might as you have a less common type too. This is doable love and we will all be here to hold your hand.  Big hug. Margie x

arpie

@Eli86  - I am guessing that Signet Cell Ring Carcinoma is one of the rarer BCs .....

The Signet Cell Ring was the cancer that my husband had in his stomach in 2010 (it is a common one in Stomach Cancer.)  It is usually considered 'aggressive' (as was the Lobular Cancer that I had removed in Jan.) Hopefully, your lymph nodes won't be involved - tho it was in one of my husbands, so he had followup chemo.   He was supposed to have chemo prior to surgery, but had to go straight to surgery as his tumour was blocking food exiting his stomach.  At 75, he went on to have successful stomach removal surgery & chemo & was back competing in triathlons 6 months after finishing chemo, even after losing 3/4 of his stomach!   He is REMARKABLE!  He is still with me today!  You can read his story here, if you like, for a bit of inspiration:
https://onlinenetwork.bcna.org.au/discussion/18896/doing-what-you-love-to-do-before-during-after-bc-whats-your-favourite/p5

Try not to 2nd guess anything - your team will be doing their best to give you the best ever treatment.  In the mean time, do what you love doing. If buddies offer help during your recovery - you should say YES PLEASE and suggest they pre-cook meals (freeze them!), do your shopping, clean your house, mow the lawn ..... anything to take the pressure off you & the family.

All the best with your ongoing treatment xxxxx

SoldierCrab

hi there @Eli86 sorry you have need to be here 
 @primek
do you know anything about this type ? please or someone with it ? 

Below are a couple of links to help you find your
way around the forum and also how to find a breast care nurse and how to order
a MY journey Kit if you haven't got one yet. 

It can be a whirlwind when we first get a
diagnosed.... Breathe and take it one step at a time. 

Navigating the online community
formerly the what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

Breast Care Nurses

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

My Journey Kits and other
resources. 

https://www.bcna.org.au/resources/

BCNA Helpline 1800 500 258

If you have any questions, concerns or require any further
information or support please call 1800 500 258. BCNA’s helpline will now be open from
9am-6pm Monday to Thursday and 9am to 5pm Fridays.  

 

How to understand your pathology reports

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

Soldiercrab

primek

I've had a read. I hate articles that say poorer prognosis...probably as it is not detected early enough. Fortunately yours has been as the dcis has been.  With small numbers studied it would be impossible to predict your individual outcome to treatment. Trust your Drs will know more soon and your pathology result will determine your treatment choices. 

Ask away about treatment choices as I'm  confident that aspect will be similar to other cancers. As in lumpectomy, mastectomy  etc. 

Eli86

Thanks for the well wishes everyone and all the links to resources - really helpful.
You’re right the waiting is the hardest because of the fear of bad results, but on the flip side having 6 weeks between DX and surgery has given me time to choose my team and hospital and make considered choices about surgery and recon. I feel very fortunate to be able to have these elements of control over my treatment as I know so many don’t. I’ve even got time to plan a Bye Bye Boobs party! 
I did have the choice of a lumpectomy, but given both tumours are invasive and the SCRC is growing 5 times faster than the Invasive Ductal Carcinoma and both are at risk of recurrence, I’m opting for BMX (prophylactic contra) with immediate recon so I never have to be in this situation again ( I have 3 children, 2 with special needs).
About 1/4 of my BS’s patients are recurring and most metastatic, so I feel like I have dodged two bullets having early diagnosis given neither tumour showed up on Mammogram. 

primek

Have you joined the breast reconstruction group we have. Real photos and experience for women choosing or not choosing to reconstruct. 

SoldierCrab

http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

primek

@SoldierCrab @Eli86 is now a member of the reconstruction group.