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invasive lobular BC

15 REPLIES 15
janemod
Member

Re: invasive lobular BC

Hi Scarlet, glad you have some dates at last for your scans. I know what you mean about needles, I am like that too, in fact I nearly fainted, I was told not to eat any thing that morning, with all the worry and fear, mixed with low sugar levels, I ended up going a bit wobbly. They put a shunt into your hand, it's not an injection, when you are on the scanner, the dye is injected into your vien, it does not hurt, its just a cold sensation. As for your surgery, your consultant will tell you how they will operate. My BC was right at the back of my boob, I had a guided wire inserted in the morning, before I went down for surgery. I didn't like looking at my scar at first, but it has shrunk so much, I don't even look at it now. Scarlet I am not sure about injection into nipple, I didn't have that done to me. As for the bras, I found some quality soft bras in TK Max, they were perfect for me. You mention about how long before you can shave under your arm, if you have lymph nodes removed, I think it is a common fact that the hair does not grow back. Also not sure about your holiday, I would have not been ready to travel 5 weeks after my op, but you might be alright, I think it all depends on how you recover. Good luck and take care Scarlet xx
scarlet67
Member

Re: invasive lobular BC

Hi all - well I have had dates for my scans - bone on Monday 8th, MRI & CT scan on 9th. I heard they inject you with something on the bone scan - do they inject anything for the other two scans? by the way - I am petrified of needles!
Also - what does the injection into the nipple feel like.
My bra size at mo is 34dd - and the one i am having lumpectomy on is already the smallest of the two - typical! Surgeon said that i would be losing 20% of breast - i did not think to ask how big he thought lump was and i assumed that i would have two cuts, one on breast and one underarm - i did not think to ask otherwise - and i did not ask how big these would be either - could it just be the one cut then? - and if it is how long is it - dont mean to be gross!
As for bras - i dont think i have ever worn a comfortable bra and i am worried i will pick wrong for this too.
How did you find things 5 weeks later - would you have travelled - i ask because i have a holiday abroad booked last 2 weeks august.
This also might be a silly question but - how long before you can shave underarm again.
Wattie
Member

Re: invasive lobular BC

Bumping up for you scarlet x
janemod
Member

Re: invasive lobular BC

Hi Scarlet, just read your thread. You will definitely will have your MRI before surgery, they need all this information for your treatment plan, don't worry you will get use to all the procedures as you go along. I did have my scan just before Xmas so had to wait till the new year for results, but thankfully it was all good news, so worth the wait. It was that day they told me exactly my treatment plan, more or less, considering the results after surgery. That was the longest wait ever, it was 2 weeks, then they had to put it back another 3 days because results were not back, due to being so busy in the pathothy lab, but again lucky for me, every thing had gone well. I did have lymph nodes removed as the BC from the same scar, like Wattie said its under the arm so you can't really see it. Personal hygiene is difficult as its all under your arm, buy some really good dressings, so you can change it as often as possible. I was given a lot from my hospital but Boots sell Mepore, buy the largest they have, you will need them. As for pain during surgery you are given very strong pain killers, which help in the beginning then just paracetamol was enough for me, I did develop Seroma which is just unlucky and still have it, but now radiotherapy is out of the way, it will repair. Try and plan the little bit of time well before you go in, you will need to rest a lot once you have had the surgery, more than I had thought. I had a month of work after surgery, and needed all of that time. As for bras, not sure how big your BC is, my was small, but my boob swelled up quite a bit, so don't worry about odd bra size, it seems to sort itself out, just find soft boneless bras and check the sides as your scar might be under your arm, and you will need it, not to rub there. If you have radiotherapy later these bras come in handy again, I did go back to wearing my normal ones in between surgery and radiation. Well good luck with your MRI scan results, will chat again, take care Scarlet best wishes Jane x
Wattie
Member

Re: invasive lobular BC

Hello scarlet67
Just wanted to add my bit ive been on the other IBC site but wanted to say hello.
I too was diagnosed with Invasive lobular last November. I am having all my treatment in France as I live here. I had a lumpectomy in december and my boobs look no different apart from a small 1 -2 inch scar on the side which is not visiable when wearing a bra. With my op i really did not have any pain afterwards and just managed with paracetamol for a bit of discomfort.
I had chemo, am having rads and will continue with herceptin for another 14 cycles (every 3 weeks) as I was HER2 positive. I will then either have tamoxifen or anastrazole after rads. I was lucky as I got all my results immediately, you seem to in France. I have been told that I will probably have regular MRI on my boobs with a mammogram as IBC is difficult to detect with mammograms as it does not always show up.
The SNB was fine but mine did not show up with the dye so they had a look when I had surgery. They took 13 nodes as a precaution but luckily it had only passed onto 2.
The best bra to wear after surgery is a cotton sports bra, nothing underwired. I wore underwired after all healing had been done but back to cotton again whilst having radio.
Try not to worry, your scans will come round soon and then your surgery will be followed quickly afterwards.
Keep in touch, good luck with everything
Karen x
scarlet67
Member

Re: invasive lobular BC

Hi Daffodil66, sorry for my late reply. Yes - agree with you - i have aches and pains popping up everywhere and i think the worst. I now have throbbing under my arms and convinced myself its in my lymph nodes - I can't wait for my operation to come - the days are going so slow. Hope you continue to cope well with chemo. xx

Hi Janemod, Great news everything else clear for you. I am waiting for my scan appointments to come through - I was told they would be before my lumpectomy which is Friday 12th July. Bone, CT and MRI.
I read DebCullys threads - it must have been great being able to talk to each other.
The waiting is unbelievable. Did you have to wait long for the results of your scans. Did you have SNB and if you did how did you find that and your lumpectomy? Is it really painful?

Also can anyone suggest best bra to wear after lumpectomy and how do you manage with one smaller than the other?
janemod
Member

Re: invasive lobular BC

Hi Scarlet, I am so sorry you are going through this, I have had exactully the same BC as you seem to have, I had no idea that I had any problems, invited for a second routine mamagram, and my world was turned upside down that day, I also knew from what the BN mentioned after she had finished the biopsy, that I probably was facing the worst. A week later it was confirmed that I had stage 2 invasive lobular cancer. I had a MRI two weeks later, because I was told that lobular cancer can be sneaky and because of the situation of lobular cancer, they needed to scan my lymph nodes, both breast and lungs. Goods news, nothing abnormal, so 3 weeks after that, I had my lumpectomy, Radiotherapy and now on tamoxifen for 5 years. Pew that seem such a long time ago now. Scarlet you are in good hands, the BCN and support team know exactly what to do. Try not to worry to much, easy said then done, like Trisha said read DebCullys threads, we all went through this together at the beginning of this year. Take care Jane x
Daffodil66
Member

Re: invasive lobular BC

Hi, they said it was 28mm on ultrasound originally. Mine had spread to lymph nodes so will need ancillary node clearance (anc) but hadn't spread anywhere else. But I know I found this bit the most stressful time & also started getting bad backs & imagined the worst. After results all symptoms disappeared! I don't know anything about core biopsies on lymph nodes I'm afraid, you will probably have to wait for results from snb to find out. Chemo is not great but I'm actually surprisec at how many feeling good days you do get, everyone responds differently & each cycle seems to come round quickly xx
scarlet67
Member

Re: invasive lobular BC

Hi Daffodil66 - Thanks for your reply. Did they say how big they thought your tumor was before your MRI. I was told when the ultrasound was done it ws apx. 20mm - will it show much bigger on MRI then? Core biopsy of my nodes showed no spread - shall I not get too happy about this info. as I am having a CT and bone scan before they do SNB? What is anc - sorry to seem a little thick. Were your scans ok - I am terrified - I have a bad hip anyway and of course that leads me to thinking all sorts. How did you find Chemo.
Daffodil66
Member

Re: invasive lobular BC

Hi Scarlet, I also have lobular cancer & as Pat says it's a tricky one to find. You probably won't know if its spread to lymph nodes until you have your snb results. Mine had spread lymph nodes so then had bone, ct & mri scans. It seems all hospitals do things differently, so try not to panic. I had chemo first as tumour measured 43mm on mri & was too big for a wle, have just finished chemo & tumour has apparently disappeared. So am now having anc & rads in 4 weeks time. You are going through the worst time at the moment waiting for scans & results, once treatment starts it gets easier as you feel you are doing something about it. Let me know how you get on xx
scarlet67
Member

Re: invasive lobular BC

Many thanks Trisha 51 and Jo BCC - i will take a look
Jo_BCC
Member

Re: invasive lobular BC

Hi Scarlet

Here's the link that Trisha talks about to make it a bit quicker for you to find:

http://www.breastcancercare.org.uk/community/forums/newly-diagnosed-breast-cancer/lobular-cancer-inv...

Jo, Facilitator

Trisha_51
Member

Re: invasive lobular BC

Hi Scarlet, me again, just found a thread for lobular ladies. If you scroll down the left hand side of this page , to Newly Diagnosed with Breast Cancer, click there and you'll find a topic Lobular Cancer Invasive started by Debcully, these lovely ladies will be able to tell you much more than I can. Patx
Trisha_51
Member

Re: invasive lobular BC

Hi Scarlet, Invasive doesn't mean it's spread everywhere, it means it has developed the potential to break out of the ducts or lobes. If your BC is lobular it means its often tricky to spot, doesn't always show up on mammograms or with ultrasound, that will be why your Con wants you to have an MRI to see if there are any more tumours lurking that they've not detected so far. Sounds like your team are really on the ball and taking good care of you. All the best for your op and SNB, keep us posted with how you are doing. Hugs Pat x
Jo_BCC
Member

Re: invasive lobular BC

Hi scarlet67

I have put for you below the link to BCC's publication regarding invasive lobular BC which I hope you find helpful to read. If you need any more information or you have questions you need to ask, please don't hesitate to give the helpline here a ring, the staff are here to support you. Calls are free 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2.

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/invasive-lobular-breast-can...

Take care,

Jo, Facilitator

scarlet67
Member

invasive lobular BC

Hi - I had core needle biospy of breast and underarm about 10 days ago and was disgnosed Friday 28 June.
Dr. said I have a stage 2 cancer but that the core biospy of the lymph node was clear. When I asked him what cancer it was he said that it was borderline ductal or lobular. Later that same day whilst talking to the BCN he came in and said it was lobular and that I would need an MRI scan. I also have to have a bone scan and CT scan. Does any one know why this is. I assumed, probably wrongly, that if it were not in your lymph nodes it would not be anywhere else??
I had been tipped off that it was going to be BC by the radiologist whilst she done the core biopsy - which came as a shock - i was worried more when she took biopsy of a swollen lymph node. I am worried sick again now that it is in my lymph nodes because i have to have all these other scans and the Dr just didn't tell me I am to have a lympectomy in 2 weeks and a SNB.
I see lots of posts on here about DCIS but not many about Invasive Lobular BC. Has anyone any information or advice on the success of a lympectomy / recovery / treatments. Is invasive lobular worse than DCIS? Invasive - does that mean it has spread everywhere?? really scared about all these other scans!