Results from Lumpectomy and Sentinel Node Biopsy - Oh Shite

Surgery | Breast Cancer Network Australia (bcna.org.au)

Types of breast cancer (bcna.org.au)

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@Yellow_Daffodil

The links above will be most helpful for you to read and formulate questions from.  

Take care and best wishes

Thank you Julez.  That's very helpful.  I've been doing a bit of reading about that AIs used for hormonal positive bc.  Letrazole seems to be a growing choice.

Hi I was recommended radiotherapy due to the size of my tumour.
I was lucky I didn’t have to have chemo as it wasn’t in my lymph nodes.
I didn’t have much trouble with the radiotherapy .
Yes I have been on Letrazole for almost a year with minimal side effects to date  ( had a bit of hot flushing initially but that settled down).
I am 63.

Thank you Julez1958.  You sound quite similar to me.  Can I ask why you still needed radiation?  My surgeon told me there was no guarantee I wouldn't need it even with mastectomy.  I am hoping I can avoid but obviously need to leave it to the experts.  Are you on hormonal therapy?  If so which one?  Please only answer if you are happy to share.

Hi there
I also had grade 2 ER positive lobular cancer 5.5cm and opted for a skin sparing double mastectomy with later DIEP flap reconstruction.
I had 28 sessions of radiotherapy,
I had the DIEP surgery 5 months ago.
I opted for double mastectomy as my cancer did. It show up on mammogram and my breast cancer surgeon said lobular is more likely to show up in the other breast later.
it’s a very personal decision but I’m happy with it.
One small piece of advice I appreciated was to wash my hair the night before the operation and also take your meds if you have pain ( everyone is different , some only need Panadol I needed Endone).

Thank you all for your kind words of support and helpful advice. It's a crap time to be diagnosed as bc nurses, surgeons etc are all on holidays (much deserved of course) so this is such an invaluable resource to be able to share and get support añytime.

I will look into pillows, a bag for drains, button up shirts etc. 

Thank you all.

I am sorry the results did not go as planned, unfortunately lobular is a tricky one to detect. Definitely get the oncotype test - yes it is a lot of money, but it will give you a lot more specific information. I find it hard to believe that this test is not covered as it can ultimately save a lot of money if chemo is not required - that’s an argument for another day. I had lobular and the MRI turned out to be accurate - no nodes involved; tumour size same as pathology etc. I had already decided that I wanted a bilateral mastectomy as I had dense breasts and I knew that my ILC was not seen in a mammogram 10 months prior to my diagnosis - it was over 4cm in area. I did not have radiation, but did neoadjuvant chemo. I am now 2 years since diagnosis.
I commenced immediate recon - expanders - but I can honestly say my recovery was excellent. I did not wear a bra after the surgery. I just had 2 strips of waterproof dressing which meant I could shower etc. I used my hair dryer to dry the dressing after my showers. Button up shirts/dresses that can be pulled up are excellent at the start. The side where I had the node biopsy was definitely more sensitive and a bit more restricted, but that improved pretty quickly. When I left hospital I had some strong pain relief if I needed it, but mostly paracetamol did the job.
My breast care nurse provided 2 cushions - crescent shaped and 1 for under each arm - which were made by a local Zonta group. They were really good at the start, but I did not use them for long. I had a drain in each side which were removed on day 6/7 before I left hospital. The time of removal depends on how much is draining off - it needs to be low. It will also depend on your surgeons - my plastic surgeon and surgeon would not let me come home with drains so I was in hospital for the week. A bag for each drain is great - long handles that you can sling over your shoulders so that you can get up and moving and your drains are safely tucked away. 
The physio will visit and give you some exercises to do - please make sure you do them as these will help with your ongoing recovery. You can also google lots of YouTube clips on exercises as you recover. 
You may find your breast area is very numb - mine still is and it will depend on how comfortable it is for you to use a breast prostheses. Ask the breast care nurse about this as you will most likely be given a bra to wear if you choose to. 
Take care.

Bugger @Yellow_Daffodil ... that is not the news you wanted to hear. :(  Take lots of Deep breaths ... Stay away from Dr Google & just go with what your team is advising you.  xx

Where abouts are you?  You can add your town/state in your 'profile' ... we may have members nearby who may be able to point you to specific services in your area.  

Sadly, ILC is one of the sneakier BCs & doesn't always 'present well' on Mammograms & US, specially if you have dense breast tissue .... and like you, I don't really trust either again, after my own ILC was missed 4 years ago! 

I was lucky & only had a lumpectomy, with Rads & then Tabs - so skipping major surgery & chemo - so my recovery was pretty straight forward.  Oncotyping will assist in choosing specific treatment relative to the make up of your tumours - I know it is a lot of money, but if it helps pinpoint the best treatment for you, it should be worth it. xx. It can take a while to get the results, depending if they are sent to the US or done in Australia. 

Like yours, my Lymph nodes were more painful than the actual surgery site .... but in my case, the pain lessened & became more of an ache.

I hope you have been assigned a Breast Care Nurse?  You will be able to put any queries that you have past them, too.

Re hospital gear - button up tops would be best for showers etc, take your iPod/iPad/chargers etc for entertainment, ear plugs are good to cut the night time noise & eye masks (as on airplanes) to assist your sleep ... Make sure you take the pain meds as prescribed (and don't wait for pain to develop ....) and do any suggested exercises 'gently' & don't over do it .... Oblong shaped pillows may help with supporting your arms at night may help ... to keep them 'chest height' .....

Altho I've not experienced it personally, some members who've had Double Mastectomies have said they've been surprised that they've not been in more discomfort than 'expected' ... so I hope that is the same with you xx

Take care & all the best with your ongoing appts xx

Commiserations, not what you wanted. But decision made, so onwards! Personal responses are immensely varied - I left hospital (single mastectomy) with the same bra I wore in and a soft pad. But it depends a lot on what your surgeon does and your body’s reactions. Drains can be a bit of an issue especially if you go home with them. They can be a thorough nuisance but it’s temporary. Any issues about lymphoedema will depend on how many lymph nodes go in the clearance, wise to ask if compression after surgery is advisable or not, if not what other preventative measures can be taken. I didn’t have any arm mobility problems but a bilateral
mastectomy may - you may need some assistance post surgery for anything that requires lifting. Best wishes for your treatment and a rapid recovery. 

@Yellow_Daffodil I'm sorry to hear the news was not what you were expecting.   I had different type of bc so I cant advise but wanted to send you a hug.   I was too sore to worry about a bra after single mastectomy.  I was given a moon pillow by breast care nurse so that was helpful.  I would suggest preparing a couple of meals for the freezer so you just have to reheat them.  If anyone offers help, accept it.  Be kind to yourself.  Xxxxx