Hi again/ILC here facing double mastectomy

Hello, so it is me again jumping from Waiting for test results to newly diagnosed.

I had meeting today with my doctor and we both decided that the best for me bi-lateral mastectomy, bones/liver scan and chemo.

My initial diagnosis is invasive lobular cancer, hormone responsive and low lever of HER2. My right breast has two masses so we cannot save right breast. My left breast is clear but because of nature of my cancer I’ve decided bye bye left breast, too. Do not want to go through biopsies/MRIs/mammograms etc.

has anyone has similar diagnosis?

They will try to schedule operation on Wed.

I really want to go on with this and start treatment ASAP. Maybe I am wrong maybe I should spend more time with my kids…

I am bit lost and weepy and really do not know how we are going to get through this :frowning:

My mom is coming to look after me, she is terrified that I am losing breasts and that I starting chemo. is chemo that bad? I am terrified at the thought how this all is going to affect my children…

thanks for listening.

Hi Barbamama,
My initial diagnosis is different from yours & i’m still waiting for the results of an MRI that i had on Tues to see the extent of the surgery that i will need & treatment aferwards but, i just want you to know that i’m thinkin of u, ur very brave having bi-lateral but i’ve been thinkin of my own pending results & if i were in your position &, i have already contemplated having to make this decision, i would do the same. I feel like doing that right now, just to be sure. I say, do what is best for you to get the better of BC!!!
Cry if u need to cos tomorrow is another day & things look different in the light of day.
Lots of love, Chez. xxx

xx

Chemotherapy is not a pleasant experience by any means, but your mother may be thinking of a time when less could be done about the side effects–this is much improved. There will probably be days when you need to stay in bed or lie on the sofa, but there will also be days when your life can go on as normal. The dose is tailored to your body mass, age, health and so on, and you will be given medicine to counteract many of the side effects. When you know which regimen you will have, there is bound to be someone here who has had the same and can tell you more exactly what to expect.

I think you are right to start treatment right away; as you have already discovered, waiting is dreadful. I’m glad your mom will be there to help and I hope you find that during the time you are recovering from the mastectomies and waiting to begin chemo you have extra time with your children.

I hope the scans are clear. I won’t say don’t be afraid, because of course you are and we have all felt lost and weepy, believe me. Remember, survival rates improve all the time and you have a lot to live for.

Let us know when the date is certain and let us know what form of chemotherapy you are going to have so we can be thinking of you.

Cheryl

Hi Barbamama

I was diagnosed bilateral b/c in 2007. I had to have mastectomy one side but my surgeon gave me the option of WLE other side combined with a reduction. At the time I thought I’d like the lot off, but now glad I didn’t. You could always keep one for now and have it off later if you still feel that way after you have calmed down from the shock of diagnosis. You don’t have to rush into anything. I recovered well after the surgery with little pain. A good physio helped me get full movement back in my shoulders (but I think thats only really a problem if you have all the lymph nodes removed)

I went through lots of chemo 6 x fec 4 taxol and 5 weeks of R/T. There’s a good thread on here called top tips for chemo with lots of useful advice on how to cope with the side effects. Take it one day at a time and you’ll come through the other side. I won’t say it’s easy, but it is doable. Its no way as bad as they make it out on TV, or at least it wasn’t for me.

If you’re hormone+ they will probably give you a hormone treatment after, tamoxifen, or an AI. I’ve had tamoxifen, femara and aromisin.
Again not the most pleasant, but again dooable. I’m keeping well and hoping my good luck contiues.

Good luck. Be kind to yourself and don’t try to be brave. A good scream helps.

Hi Barbamama,
So sorry to hear your story, hope they manage to reschedule so you don’t have to wait too long.
I had primary bc in 2009, got away with WLE but did have radio and chemo as had full lymph removal.Of course no-one who didn’t have to, would chose to have chemo, but even all those years ago it was doable and things have changed a great deal since.Sickness can be controlled, not all chemo makes you lose your hair and even if it does you learn to live with being bald for a few months.I guess the hardest sideeffect for a mum is probably fatigue so get yourself a good support network if you can.
I hope the op goes smoothly and you recover quickly. If you need chemo I’m sure you will be able to cope, just tell your medical team if you have se’s and they can usually minimize them for you.
Be gentle with yourself. Let us know how you get on when you feel up to it.
Best wishes, Julie

Hi there, I am so sorry you are at the stage when it is all so frightening and getting through the day means taking each second as it comes with a big breath and trying to keep calm. I can only tell you my story and hope it gives you some comfort. I was diagnosed with invasive lobular cancer in my left breast in March last year. I had 3 tumours, 1 very large, 1 large and 1 small in different places in my breast. It took a while to get a clear diagnosis but when they sorted it a lot happened very quickly. I wasn’t advised to have my other breast removed and didn’t really consider it, it was cancer free and I felt I had enough to cope with. I am large so a reconstruction wasn’t advised (probably would have said no anyway) as a reduction on the other side would have been needed. I was told that although lobular cancer means it comes in multiple sites this doesn’t make the prognosis worst but does mean a mastectomy can’t be avoided. I had this done and was out of hospital the next day, I was terrified but it all went smoothly and I recovered really well without too much discomfort. I had a sentinel node biopsy and ended up having 25 nodes removed as it was in the nodes but not many. A new study says its not necessary to have all the nodes out so you might want to discuss that with your doc. I ended up having a second op to remove the node. I had chemotherapy mainly because of the node involvement and because I was considered to be young, at 49. I had 3 FEC and 3 Taxotere. I was really scared of the chemo but the FEC wasn’t too bad at all, I made sure I took all the side effect meds and the main things were feeling a bit strange almost like you do when your ‘going down’ with something and the nausea altho the drugs deal with that and i was never sick. Just felt queasy a bit. I was up and out everyday and was able to go about a relatively normal life. The tax was harder I won’t lie as it made me very constipated but after the first time I knew how to manage that and it made me very achy and a bit like I was in a fog. I had sore feet and a sore face as it causes skin and nerve irritation. My doc said I was suffering badly but I never once felt I couldn’t do it, it was all manageable and a world away from how chemo was 20 yrs ago. There is a lot the doctors can do to ease it and they will, never, ever worry about telling them as they will move heaven and earth to make it as easy as possible for you. You just need to be prepared, lots of soup and sorbets in the freezer as it may make everything taste funny. I lived on oatcakes and marmite! I then went on to have radiotherapy which was truly easy and the staff made it so. I just kept moisturising for Britain! I have four children and even looking at them in the beginning breaks your heart but that does pass and you adjust to your new circumstances. Thousands and women every year survive lobular cancer, it is no worse than any other and as I now know a good life can go on with one or no boobs, it does matter of course but I tried to see it as a life saver. It really is as are all the other treatments. I also went for healing, I ate lots of green veg and stopped eating dairy as I had read Jane Plant’s book, ‘Your life in your hands’. Doing stuff for me helped me cope with the feeling of being out of control, that was hard for me. I am on hormone tabs and yes its been a very long year and not many people will ever really know what you will have gone through. Extra tests are very scary but they may very well reassure you. Keep trying to think positively and believe that what you think will effect what your body is doing. I really do believe we can help to heal ourselves through visualising all those bad cells scuttling off. This is all being done to give us back our futures. Right now you, like all of us, are in that awful no man’s land stage when you aren’t yet getting on with the getting better, but that will be soon and you can get better, not just for a bit but for ever. I didn’t think I would survive beyond a few months at first and wanted to spend every minute with those i loved. Last week my oncologist said he didn’t need to see me for 6 months, I am done! Of course I live, as we all do, with the fear of a return etc but we have far more chance that this really is ‘IT’ and it won’t come back and we have our futures back. Only our minds stand in our way of our next part of a wonderful life. I try and think whats the point of all that if I live in perpetual fear. Its is hard and at the beginning its dreadful, dreadful, dreadful - but you will cope and it won’t always be so scary. ILC can and is beaten all the time, you can keep your other boob if you want to, it doesn’t need to go unless disease is identified there too, the risk of it subsequently coming there is small but hey I went from being a J cup to being flat on one side and its not too bad. Those that love me still say I am beautiful which is funny because I certainly wasn’t before!! My son has down’s syndrome and he has showered me with love, washing my back in the bath, helping me dress when it was hard and he says daily never mind mum soon be back to normal. Not sure the old normal will ever return but the new normal really isn’t that bad. Life really does go on and it can for you I am certain. I have gone on and on, so sorry, lots of love to you, remember every time you smile you release a immune busting hormone!! Go get it girl! We are all here to help, all my healing wishes love Tessa xxxxx

Hi Barbamama, sorry you had to join us here but hopefully you will take some comfort from
the support here. I was diagnosed with multifocal grade 2 ER+ ILC and grade3 DCIS last year 3 out of four quadrants of my right breast were affected. I had a mx & ld flap recon with ANC. I was 45 with a 8&10 year old and one son at uni. I am so surprised how resilient they are, we were honest and answered all their questions and even through fec/tax Chemo life’s routine carried on for them and they coped very well. I know it’s so scary but I have just had my first annual check up and all is as well as it can be. Never thought this time last year we would get through as well as we did. There will be ups&downs and hard times no doubt, but there is support from your medical team, your family&friends. I wasn’t offered a mx of the “good” at the time of dx but have recently discussed this with the onc but have not made a decision so far. I wish you all the best, hope the scans are clear. Any questions please ask! X

Hi Barbarmama

Yes, I was diagnosed with lobular cancer back in 2009 and although it was only in one breast decided to have a double mastectomy. As you know it is often harder to detect ILC and mine didn’t show up until very large (although I was too young at 45 for screening programme).

The treatment feels gruelling not least because it’s over such a long time. People’s reactions to chemo vary enormously but there’s plenty of women here who can help with advice when you reach the chemo stage.

All you can do is take one step at a time. Some days it feels endless and then all of a sudden the treatment’s done. I had a double mx, 4 x FEC and 4 X taxotere (chemo) and then radiotherapy.

It’s great you’ve got support from your mum. However hard it may be for your children (and who knows it might not be anywhere near as bad as you think), I’m sure they’d rather you do all your can to get rid of the cancer.
take care, Elinda x

Yes, Elinda is very right about the difficulty in detecting ILC, mine was detected by U/S and didn’t show on mammo, had to press for MRI at annual check up. One of the reasons I am considering the risk reducing mx now. X

Hi all, I hadn’t really thought too much about a mx of other side. My tumours were big but I think they got a lot bigger once investigations started, not blaming anyone but think the messing about with them did make them bigger. I had felt very minor changes in shape, hardly anything a couple of months before and got them checked. I was told it was ok, now I would go at first thought and camp there until I had MRI so hopefully would minimise the risk. My consultant said they wouldn’t rely on a mammo for me again but always examine vvv carefully. Still whats losing 2! You get things into perspective quickly don’t you! love to you all xx

hello ladies, thanks again for your lovely messages, support and your stories. Yesterday was very dark day, today is much better. I stopped crying and i think of myself just being sick instead of dying. I know that there will be more ups and downs but i need to take just one day at the time.

Question about double mastectomy, how is it going to be in reality? I am quite fit, slim if not skinny, boobs are really small. very active and boisterous boys of 5 and 1.5 years of age. next two weeks are school holidays so they both at home full time only little one will go for 2 days a week to daycare. Operation is scheduled on wed or fri. will know tomorrow. In all reality, how much movement will I have with my arms? Doctors said that routine stay in hospital after double mx 7 days but I might be released after 4 days. I will have my two little bags in my armpits, do I need to empty them? Can I be up and about? Go to playpark and just sit on a bench for 2 hours while kids play? I just want to prepare as much as I can for the next 2-3 weeks. My mum will come probably the end of next week and stay for the next 2 weeks. is that enough?

thanks again.It means so much to me that i am not alone and my virtual friends are here to listen and to help with advise. And hearing all your personal stories 1 or 2 or 3 years after diagnose brings so much hope… because like many of you I have this moments when I am not sure how much time I have left with my boys… lots of love, xxxxx

Hi Barbarama

I had a double mx without reconstruction two months ago. I had ILC in my right breast and IDC in my left. I can honestly say it was not nearly as bad as I had imagined. For the last few weeks I have been doing most of what I could do before the op.

I was in hospital from Tuesday till Saturday. I had 4 drains which were removed gradually – the last one coming out on the morning I was discharged. They don’t need to be emptied. Once the drains are out it is much easier. You will be given pain medication to help until things settle down. You will need help when you get home because lifting, stretching and any jerky movements eg hoovering and ironing have to be avoided. You will be well able to do the little things like making a cup of tea etc and if the weather is good you should be able to go to the park with your boys. Think you should have another adult with you though in the early days.

You should start off with the gentle exercises first and then increase when you feel ready. That way the strength in your arms comes back over a few weeks.

Good luck. You have youth on your side so I am sure you will be fine. I am an old codger of 64.

Rose xx

Hi ya me again, I went out and about with the drains in although I didn’t move from home for about 5 days after my mx. My drain stayed in a little longer. I came downstairs after day 1 spent in bed and did lots of watching the family and let others ‘do’. I am sure your mum there will be fine. Get lots of kiddies DVD’s in and books to read with them. Remember your mum and they will just be reassured by you being there.Make sure you get your heart pillows to go under your arms. The hospital should give you these before you leave, ask your BCN if not and lots of fluffy pillows to make you comfy and shield you from lively little bodies. I made the mistake of not telling people I needed them, the most unexpected people want to help. I also learnt that I coped a lot better when I wasn’t tired so its important to get your rest. Lots of love, let us know how you are Tessa xx

Hi, in preparation for your op you may want to think about having front fastening pj’s & post op bra, I had a sturdy gift bag to carry my drains in (and hide them from the boys), I had my hair done the day before I went in and a friend came to help with hair washing after, too. I also had zip/ or button up front tops after the op as arms overhead movement takes a while to work comfortably again. I had a V-shaped pillow, which was great. I was in for 7 days and started my exercises whilst in hospital. A little bit a few times a day, your BCN will advise you. Your boys will pick up on how you are feeling, I am sure. They are very perceptive. Fingers crossed for you! X

Thanks again for sharing your experience about mx. Yes, I’ve already made a list I need: front fastening tops and pjs and some decent cover up knickers (do not want to wear my thongs in hospital :-). Not going to do homework for at a least 10 days, maybe some light cooking and that’s it.

I’ve asked doctors in hospital if I should buy some specific bras/tops or anything else. they told they will give me everything. I am not in the Uk so probably it is different here (Switzerland).

there are two things which are on my mind a lot: my cancerous breast is really sore and I have this burning feeling since my last (2nd) biopsy on wed. Is it normal? It is not hot, and I do not have a fewer. it’s just bruised and really sore.

secondly, is it possible that my diagnosis can change dramatically after mx and sentinel node test and bones/liver scan. just to remind you, my left breast is healthy, my right has two masses ILC. They do not think I have mets and on scan my lymph nodes looked clear.
you see, I am worried again…

thanks again. xxxxx

Barbamama, I can only comment on the soreness. I found that the boob that had had core biopsies did ache and hurt for a good while, and it went all colours of the rainbow from dark red to purple to green, yellow, and every colour in between.

A lot of people who have younger children have found the book “Mummy’s Lump” really helpful with their littlies, so you might want to have a look at it. Not sure how you can get hold of a copy but I’m sure someone will be along shortly to tell you.

Very best of luck with the scans/tests/results, the waiting is just so horrible, but it is so much easier once the results are in and you know exactly what you’re dealing with. Diagnosis can change slightly, but it’s unlikely that it would change drastically. Mine changed from Grade 2 to Grade 3, but they’re usually very careful when looking at nodes on US.

Good luck.

CM
x

Attached is a link to information on the BCC publication, Mummy’s Lump, as mentioned above:

breastcancercare.org.uk/healthcare-professionals/publications/younger-women/*/changeTemplate/PublicationDisplay/publicationId/18/

With best wishes,
Anna, BCC Facilitator

hi and thanks again. I am having major panic attacks today (and I am not panicky person at all) :frowning:

My surgery is scheduled on thu. i am buying ticket for my mum to arrive on sun. Hopefully on monday i will be at home.

Really worried how hard is it going to be for my hubby alone with kids for 4 days.

also worried that maybe I am not going to be ok… :frowning: will I? My son is asking about seaside holiday and i do know even know what to say. Are we going this summer to seaside or not?

oh god, this is so hard… xxx

Good luck with the op. I know it is pointless saying don’t worry because you are bound to be but kids are much more resilient than we think xx