67.3K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Invasive lobular cancer newly diagnosed need help!

23 REPLIES 23
goldengirl
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi again thank you for the good wishes!! Im sorry I havent been back on here. Laptop trouble and its hard to type on my phone! All went well in surgery! 6-7 hrs in surgery! My plastic surgeon was amazing! I had tea and toast at 9pm on day of surgery. obs done every hour through the first night so no sleep but just delighted to come thru surgery and the bad guy is gone! I had 2 drains in 1 breast, 1 back. Got breast drain out on day 3 and back on day 4. got home on day 4 too! (Friday) amazing I had quite good movement. I drank gallons of water on first night as on iv antibiotics just in case of infection. then only had ibufrofen and paracetamol while in hosp. doing my physio exercises and trying to walk every day. get tired easily tho. So first step over, bit of recovery then I move on to treatment. Still waiting to hear Pathology report/meet with oncologist to decide treatment.  I still get a wee wobble every once in a while. It's just all a bit surreal at times, this whole business. anyway just gotta keep going..... Good luck to you all. Much love to all of you who've had your ops -  recover well! xxxxx

Guest user
Not applicable

Re: Invasive lobular cancer newly diagnosed need help!

Best of luck on Tuesday!!!  I'll be praying all goes well!!!

Tracy1967
Member

Re: Invasive lobular cancer newly diagnosed need help!

Brilliant news goldengirl re your surgery date, mine is on Monday the 14th October and I can't wait to have this "squatter" removed. I'm having a double mx with nipple / areola sparing ( as this no where near the lump) and implant reconstruction. The consultant advised that the areole is skin and only the nipple is tissue. They're completing the sentinel biopsy during surgery but I'm still not sure re after treatment, they're going to see what the outcome of the final biopsy / sentinel biopsy is.
salkei
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi Goldengirl

 

Good that you have a plan of action, will be thinking of you on Tuesday xx

goldengirl
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi Ladies Just a wee update. I had a sentinel node biopsy on thu and am having a mx and recon on tuesday! It's all happening now. I felt this was the best option for me, after talking to both surgeons.  LD recon no implant. I'm resigned to having my surgery to get this evil out of me and just hope recon will survive as much as poss if i have rads. Then i can still go back for a better look if needed. I'm not sure how I will be, of course, nobody does but I'm gonna do everything I can to get myself in good shape for chemo. Phew! Thanks for all the advice and info. Please keep in touch on here. xxxxx

Guest user
Not applicable

Re: Invasive lobular cancer newly diagnosed need help!

It sounds like you are keeping yourself well informed.  I understand about the waiting.  It's the worst!! I have state medical so it takes almost 2 wks to get any kind of approval.    I hope you have a lot of family and friends supporting you,  I have my family.  (I still have to tell my Dad, soon.)  You have my support, keep me informed, I'll do the same.     

Tracy1967
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi Goldengril, I totally understand how you're feeling right now regarding the waiting, it's horrible and plays tricks with your mind but we will get through this. Like you I don't know what my treatement will be but I certainly want a double MX for my own piece of mind once this horrible journey is over. I guess I'm looking at it as a boob job on the NHS - it's the only way I can make light hearted of this situation.  At first i was dreading the thought of chemo, I have long hair and can't imagine being without it. Like Sally I'll look into a human hair wig and get my hairdresser to colour / cut this so it's similar to mine. I know a lot of ladies are able to embrass not having hair, I think they're so strong. I look forward to hearing how everyone is doing and I'll keep you updated on my status.

 

Take care

 

TracyXXX

 

salkei
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi Goldengirl

Yes resigned to the idea of losing my hair but on the plus side im going to experiment with different wigs, my hubby is going to get a different woman every week lol!

Apprensive at the moment but i know thats just the fear of the unknown, loads of other ladies have done this and are doing this so got to go wth the flow, i shall try and be as positive and 'loony' as i normally am.

 

Sally x

goldengirl
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi Sally hope your chemo goes well and you're not too ill. Have you resigned yourself to losing your hair or do you have the chance to use a cold cap? Would you do that? Good luck with this part. Hope you're feeling ok at the moment. would be glad to hear any of your thoughts and feelings at this stage. Love xxxx

salkei
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi girls

 

After my meeting with the oncologist yesterday, i am having 6 sessions of FEC starting sometime later this month to mop up any stragglers that have remained after the mx.

 

Hope you are all ok

 

Sally x

goldengirl
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi DeBue I have  a mass at 12 oclock, 5cm wide.  I had 2 biopsies taken and a "needle shoogle" to get as many cells as poss. this is how i got my diagnosis. They knew from the cells taken in needle it was cancer. I waited a week to get the biopsy results, to confirm lobular cancer. That's all they told me, that and I'll need a mx and chemo and probably rads. I had a lymph node biopsy done and it was non cancerous but reactive - they think because I had had a biopsy and it was reacting to that. I THEN had an ultrasound on the other breast and there were a few areas of concern. To save doing lots of biops they sent me for MRI and after that I had 3 biopsies taken of one indeterminite lump! (I believe the person reporting the MRI called the radiologist and suggested a biopsy) I still havent had MRI results definitely and am waiting for biopsy result too. The medics should know by wed and I should see my consultant on thu. In between all this I'm supposed to decide if I want recon surgery at the same time as mx but I can't really answer that without all the information! hopefully this week will see everything tie up and get a date for surgery.

The waiting is the worst!! I don't know why anyone would NOT have chemo or rads as it is a catch all for any loose cancer cells floating around. However my oncologist, whoever that will be , haven't met him or her yet,  will dedide on treatment after surgery following post op pathology report.

Keep me up to date with your progress and I will too if that's ok with you. Good luck, breathe deeply ! xxxxx 

 

Guest user
Not applicable

Re: Invasive lobular cancer newly diagnosed need help!

   I'm not sure how you got your diagnosis without your pathology report.  Do you know the size and location?  Is it a ball or a mass or both?   Have you had any biopsies done yet?  If so what kind of biopsy was done?  I had an Ultrasound Core Biopsy done on Septet. 24th.  I saw my DRP. Today,  It's official, I have Invasive Lobular Carcinoma It's very large.    Because of the size and placement (it starts in my nipple at 12:00 o'clock, goes up 3", around, out to 4" at 7 o'clock.)    my Dr. says he highly recommends a mastectomy.  He says I will not need ANY chemo or radiation.  I'm hoping things might be better then you think.  I don't know, I'm still new at this.   I now have to have an MRI to see if I have any cancer in my left breast (no biopsy nothing else).  If I do my Dr. recommends a double mastectomy.  Is that why you are having an MRI?     

goldengirl
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi Wattie great news re your mri and mammogram! Smiley Happy I should have said before! sorry Too much whirring round my brain xxx

salkei
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi Wattie

 

Great to hear of your positive mammo and MRI Smiley Happy

 

Goldengirl, at the end of the day you have to go with what feels right for you, i remember those feelings of sheer terror especially during the waiting for my mx, i felt that it was so unreal as i felt so well! i would suggest not looking so far ahead just take it a week or a day at a time and each step as it comes. Every step is a step closer to ridding yourself of your squatter and for good.

 

 

goldengirl
Member

Re: Invasive lobular cancer newly diagnosed need help!

Thanks girls really helps knowing others experiences. Obviously my priority is to get this cancer out of me. if i knew in advance if id need rads or not it would help my decision. and if I do need rads then you can't have surgery until 6-12 months after I believe which probably puts me at 18-24mths from now. It seems so far ahead and I believe, like you say, I will have gotten used to the prosthesis by then. Our hosp says they dont grade cancer! so I have no idea in that regard. Maybe they mean until after pathology results post op. In addition I'm still fairly terrified I feel my life has changed for ever and as I'm generally the one who worries about everyone else it's hard to be in this position. Does that make sense? It's been just over 2 weeks and feels like a lifetime. I think I'm lucky in that my surgeon is extremely careful and thorough - no chances taken at all.The year ahead is daunting for sure!!  the reason for doing the recon at same time as mx is - 1 op 1 anaesthetic 1 recovery which would be great if no rads! In addition I don't have a clear option for recon. AHHH!!! Thanks again You have all helped. Good luck to you all and look after you! xxx

 

Wattie
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hello Golden Girl.

i am nearly a year from diagnosis and treatement. I had invasive  lobular cancer, grade 3 stage 1 Her2 +. I had a wle, chemo rads and am still have my herceptin,  along with hormone therapy for the next how many years!

 

In view of what I went through, and I know you are a bit different as you are having a mx, I would advise to wait on reconstruction surgery. Give yourself and your body time to recover and adjust, then maybe a year down the road you can re evaluate things. By the way yesterday i had a results from my MRI and mammogram and all were clear, so next mammogram Sept 2014.Good luck with what ever route you take and be kind to yourself karen x

Biddlybee
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi Golden girl, hi Sally, I am in a similar position to Sally - surgeon said not to have recon at the same tome as surgery due to the likelihood of needing further surgery. I didnt need a ny more surgery, but now to be honest, i dont think i want to go back and have it done. I have chemo starting on 7th Oct and dont need rads, but will need herceptin for a yr. i think I will have had enough of hosps by then. I will be 56 in Oct., and am fairly happy with prosthesis. I still have just the comfy ones they give you after surgery, will get my silicon one on 9th Oct. My sis had a recon at same time as mx a couple of yrs ago., and then needed rads. Which has ruined her implant and she is having to go back and go through all that again. She is ok with it, but she is also a lot younger than me! All the best x
salkei
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi again

I'm 53  in October and i just don't see the point of putting my body through an op that is in my mind really necessary.

I am happy with the prosthesis as it stops me looking like Quasi Modo (lol) and gives me back a shape for the outside world. I didn't need rads as when i had my mx and SNB, they got all of my squatter out and my nodes were clear.

My surgeon advised as well not to have recon at the same time in case and i felt that he knew best, also a lady i have got to know in the same position had a recon at the same time, needed rads and it essed up her recn so she has to go back to have it redone!

 

Now 6 weeks post-op and a lot of the seroma has gone and the sensations are beginning to come back, just still have that 'box of chocs' feeling under the arm.

ljmostlyautumn
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi - I have replied on your other thread. xxx
goldengirl
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi Sally thank you so much for replying You are the first person anywhere that I have had advice from and it really helps!! I think you have to be in this position to understand. a few questions if I may and please don't feel you have to answer them all. Can i ask how old you are? I'm 48. Is it the thought of more surgery that puts you off recon? or just generally happy with prosthesis? I have seen some they look ok. I just don't know if I should risk recon without knowing if I need rads I can't see at the moment why I wouldnt have rads tho. Do you know why you don't have to have it?  will you start chemo?  My doc was fairly sure 'Id get both albeit we have to wait for pathology of tumour. thanks Sally Hope you're OK after surgery and feeling fine  good luck with onco on mon xxx

salkei
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi goldengirl

i was dx with invasive lobular stage 3 back in July. I had a mx without reconstruction in Aug as i didn't want to have anything get in the way of further treatments i might have needed.  In the end i do not need rads but have a meeting with the oncologist on Moday to discuss what happens next.

For me the right decision was not to have recon and TBH i don't know if i will ever have any, i'm coping quite happily with a prosthesis. 

 

Sally x

goldengirl
Member

Re: Invasive lobular cancer newly diagnosed need help!

Thank you Sam! x

 

Sam_BCC
Member

Re: Invasive lobular cancer newly diagnosed need help!

Hi goldengirl

 

Firstly, welcome to the forums, I am sure you will find it a great source of information and support.

I'm sorry to read of your diagnosis, the first few days and weeks are always difficult when coming to terms with things. 

 

Whilst you are waiting for the  other user to reply with their experiences you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you better understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-

http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...


Also, do give the helpline a ring if you need any further support or information. They're on 0808 800 6000. Open 9-5 Monday to Friday and 10-2 Saturday.

Best wishes Sam, BCC Facilitator

goldengirl
Member

Invasive lobular cancer newly diagnosed need help!

Hi I have recently been diagnosed with lobular cancer. I am looking at a mastectomy, chemo and radiotherapy. (subject to pathology report but likely) I have to choose whether to have reconstruction surgery at same time as mastectomy, in the knowledge that if I need radiotherapy it might mess it up! What to do? is it better to wait til treatment finished or should I take the risk and go for it and what type? Would be glad to hear from anyone who has gone though similar and do you feel you made the right decision? I now have to have other breast biopsied following ultrasound and MRI. Smiley Sad Fairly terrified on top of all that!