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Grade 2, multi focal Invasive lobular cancer diagnosed October and awaiting mastectomy.

8 REPLIES 8
Member

Re: Grade 2, multi focal Invasive lobular cancer diagnosed October and awaiting mastectomy.

Hi Gannon Dagon, it’s good to hear you are through the Op, and I keep fingers crossed your wound keeps healing so you don’t need further surgery. It is just one blow after another, and all best made plans go to pots because someone else appears to have a different agenda than ourselves. I understand your feeling of vulnerability, I am usually the driver and the one with the clear head for problem solving, at home and at work. Someone else is pulling the strings - not us, and I am not used to this either, nor is this me! I came down with flu over 2 weeks ago, something I was fortunate not to have had in over 20 years and am still recovering from a chest infection. I was suppose to have had the sentinel lymph node removed this week, and if clear to be followed by the mastectomy and reconstruction both at the same time in a couple of weeks - so everything is on hold yet again! My bone and body scan came both back as clear, which is a great relief, but I couldn’t even get the body CT scan done without problems, it broke down at our local hospital the day I had my appointment, I feel like I am currently dragging myself from one day into the next day without a purpose, so much for all my positive thinking and just wanting to get on with things. Part of me thinks now it’s all just a bad dream and I wake up soon to what it was before the diagnosis?

How did you manage with the drains and getting comfortable to sleep? My girls and I are planning some shopping this weekend to get some practical nightwear, and I think I may need to look at post op bras?

It certainly is no walk in the park and badly messing with our heads. I hope you’ll get some good news when you get the results for your grading, yet another hurdle to jump over whilst trying to remain positive.

Perhaps speak to you again soon, if I ever get to the other side of this mastectomy

Sending you best wishes for your recovery
Xxx
Member

Re: Grade 2, multi focal Invasive lobular cancer diagnosed October and awaiting mastectomy.

Many thanks for your answer and I'm sorry I haven't replied earlier. I'm now 4 weeks after surgery and the breast wound is healing slowly but may need a skin graft. Still waiting for my final grading which I hope to get Wednesday but the whole journey has not been without incident and I have felt incredibly vulnerable (not like me at all) and also very frustrated at not being able to plan ahead. Like you I feel like I could go nuts at times. Ah well no-one said this would be a walk in the park and I'm happy to be hanging in there.

Member

Re: Grade 2, multi focal Invasive lobular cancer diagnosed October and awaiting mastectomy.

Thank you. In comparison to your approach I feel a tad under prepared. I tried to convince myself that the big C was Christmas but now I feel that I should have spent the time more wisely. On the other hand my mind and emotions have been a bit chaotic. All the very best and thank you for sharing, it does help to put things in perspective. At least I have found my sense of humour which I lost for a few days, and that has never happened before. Am just about to cut up a Kaftan and modify it for the expected checking, drains and mobility issues as I don't feel at all sleepy. Currently not sure if the left breast is to be reduced as well as recon to the right. It is a shame in some respects that the Christmas holidays and family have limited the tme I have had with my husband but it was getting too intense and poignant and being facetious is easier. I hope we speak again, your name made me smile because when I was younger my baby cousins couldn't say my whole name so Nettie was my nickname.

Community Champion

Re: Grade 2, multi focal Invasive lobular cancer diagnosed October and awaiting mastectomy.

Nettie, good for you; I think strategies are very important for coping mentally and having some immediate treats really helps to give you a lift.  I think its also a good idea to not tell any more people than you can cope with too.   I felt that my own anxieties were enough early on without managing other people's, especially when you don't have all of the answers.  I hope you enjoy your spa experience.  xx

Member

Re: Grade 2, multi focal Invasive lobular cancer diagnosed October and awaiting mastectomy.

Hi, I am sort of on the same time line as you, just a bit later with everything, diagnosed 2 weeks ago I know I will have to have a mastectomy, I asked for a transfer from the regional breast screening team to our local hospital’s breast clinic team (I had a lumpectomy and follow up radiotherapy in 2005 so with two new cancerous sites in the same breast I could work it out myself that I won’t be having another lumpectomy) and am now waiting for a date for a body and bone scan, new MDT meeting and then consultation with the new team and getting some questions cleared and treatment plan explained over the next few weeks, I have not had any discussion with anyone as yet what or whether reconstruction is a possibility or not.
My husband and our 3 grown up children are great and very supportive, they have their own questions and worries. I have told only very immediate family and very closest friends at the moment as I just can’t face questions I don’t have the answers to as yet, and until I have things straight in my own head and we are on the other side of the holidays.
What I did google though is ‘how to prepare for a mastectomy’ so I know I won’t be able to sleep on my usual side or lie on my tummy for a massage, that prompted me to book a night in a spa hotel with my husband next weekend for a dip in the pool and sittings in the sauna & jacuzzi with both my breasts still intact, followed by a back massage - this is my treat to myself. The waiting and not knowing is awful, I try to make plans for my recovery time rather than the next few weeks, I downloaded some music, researching for a break after the OP and what I might be able to do do then and try something I never get the time to do as I am working fulll time. It doesn’t mean I am any less scared or worried, it let’s me be in control over the immediate worries I am just not getting the answers to at the moment.
This is my strategy, I hope it will continue working for me as otherwise I’ll go nuts
Sending you hugs and good luck for your OP in Monday
xxx



Community Champion

Re: Grade 2, multi focal Invasive lobular cancer diagnosed October and awaiting mastectomy.

Hi Ganny Dagon,  sorry you find yourself here, especially during the festive season.   The waiting really is a tough time and causes alot of anxiety and your mind can easily spiral out of control.  We all understand that on here.  I was treated for stage 3 ER+ a year ago with chemo, surgery and I ended my treatment last Christmas in hospital for radiotherapy nearly every day.  life really has moved on now but when its in front of you is hard to not feel very scared.  Here's my story which you may find some comfort from lifeafterlola.com.

Once your treatment plan is in place you can chat with others in the "going through treatment" thread - I found this really helpful and still keep in touch with my chemo buddies.  In the meantime there will be plenty of others to chat with just here.  Best wishes and I hope you manage to enjoy Christmas just to spite the big C. xxx

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Member

Re: Grade 2, multi focal Invasive lobular cancer diagnosed October and awaiting mastectomy.

Thank you, it helps knowing there are other people out there and it is less lonely. I am considering going to a local "Breast friends" support group in Hull but there is something more private and anonymous in just typing my feelings rather than being face to face. I am relatively new to this area and don't know my way around the city at all and I seem to have lost some of my confidence and joie de vivre. Everything seems a bit of an effort and I always thought hibernation at this time of year was a really good idea.

My sentinel node biopsy was clear which was a huge relief.  I wasn't sure I would get the results  as had been warned it might be after Christmas. I was quite surprised how much of a relief I felt to be honest because I thought I was handling things quite well. Now just have the angiogram, and CT scans on Saturday prior to surgery on Monday. I am having a DIEP reconstruction following mastectomy but knowing what clothing to have in the recovery period is difficult.  I expect to be at least a size smaller afterwards so don't want to buy any new clothes/underwear. Shame I'm missing out on the sales but on the bright side will save on the New Year festivities but it is the first time in many years that me and my husband will have spent it apart. 

Community Champion

Re: Grade 2, multi focal Invasive lobular cancer diagnosed October and awaiting mastectomy.

Ganny Dagon

 

Hello and welcome to the forum we know it is not somewhere we would willingly want to you be but you will find loads of help and support from the wonderful ladies on here who know exactly what you are going through. 

 

The trouble is this period of waiting for surgery and getting your treatment plan is the worst but honestly once that is all in place it does get easier because you know what is going to happen and when.  Just take each day at a time and set yourself small achieveable milestones and try not to think too far ahead.

 

Just keep coming on here and there will always be someone who can help you.

 

Sending you lots of hugs

 

Helena xxx

 

 

Member

Grade 2, multi focal Invasive lobular cancer diagnosed October and awaiting mastectomy.

Its taken me a while to reach out for help but despite a loving husband  and daughters I feel very alone.The result of my sentinel node biopsy is being discussed in the MDT tomorrow and I would really like to know exactly what I am dealing with. Surgery is due on 31.12.18 but I seem to have been waiting around for a long time, found out on 18.10.18 and thought things would go quickly, am I just being unrealistic? The staff I have met have been lovely but the waiting is awful.