do I wait till it is invasive or do I have masectomy
Hi Pebbles,
I had invasive lobular cancer in March this year and had WLE and sentinel node biopsy that showed no spread to the lymph nodes. Unfortunately the histology of the WLE showed LCIS as well. I had a mastectomy and immediate reconstruction in April this year, and because of the mastectomy, did not need chemo or rads. So I feel that I have got off relatively easily. I am on Tamoxifen for the next 5 years, and the side effects are not too bad.
If I was asked if I would do it all again, I would but without the WLE first; I personally would not wait for it to become invasive, even though there is a chance it wouldn’t in the future. I’d rather have the peace of mind that it’s gone.
But you must do what’s best for you!
Best of luck to you,
Sally xx
Hi Pebbles
I agree with Sally. I had widespread DCIS and had Mastectomy with immediate reconstruction and sentinel node biopsy.
As soon as I knew I had cancer I felt that I wanted it cut out and gone. I could not take the risk that it may or may not become invasive. I had to think of my children. As it happens they were all high grade cells and I had Pagets which was not expected. so it was the right decision.
I also am now on Tamoxifen and did not need chemo or rads.
It will be interesting to see if there are people who did not have surgery.
Take care as Sally said do what is best for you.
Sandra
hi sally lou and mollyjoemax
thanks for replying, I’m glad your ok. I had a lump removed and because of this LCIS was found, the lump was ok it was a fibroid, I guess I am lucky as I have insite into what can happen and can do something about it. I had nearly 4 months thinking I had cancer and it was horrible, the results took forever coming back and I am now faced with this and what to do, I know what I should do but they tell you all the down sides of the masectomy, I to have children and it frightens me of what might happen. my head is in a total spin why can’t life be simple. how long was it till you were back on your feet from your masectomy?
A big thankyou to you both and I wish you a healthy future
love gaynor xx
If I found out I had LCIS I would definitely not have it removed. As far as I can see it raises your risk of getting breast cancer, but so does having a condition called atypical hyperplasia that I have. I didn’t want to have a mastectomy when my tumour was removed, it had DCIS round it but I would still not want to have a mastectomy. LCIS is an indicator you could get breast cancer in either breast, so also do you go ahead and have both removed on the off chance you may eventually get breast cancer? Most people with LCIS won’t go on to develop breast cancer.
Mole
Hi Gaynor,
Re your question about how long was I back on my feet - well I had my mastectomy on 12 April and was back at work on 4th June. At the time I was a single mum to three boys aged 6, 8 and 11 and worked 9-2.30 pm every day. I managed because I had to and I think you’ll find that that’s how people do cope - you have to, especially if you have children. While I was in hospital and for a couple of weeks after, my children stayed with two of my closest friends and I was back home with them three weeks after my op. I couldn’t drive for 6 weeks due to the op using my stomach tissue for the reconstruction, so they went to school in a taxi. This was paid for by a one-off hardship payment that my bc nurse got for me. I am now very well, and living in London with my partner, this three children and my three.
As far as developing bc from LCIS goes, my consultant said we could leave it and probably nothing will happen - but we’d be mad to. Also, my partner’s first wife died of secondary bc a few years ago and I just wanted it gone. I certainly don’t want him and his children to go through what they went through then and so I’m taking every step to make sure as best I can that it’s gone.
All the best to you and I hope you find what’s best for you.
Love,
Sally xx
hi there mole
thanks for your comments, now you can see why I am all over the place some say not to do it and others who have had had LCIS have gone on to get invasive cancer. I wish I never had a lump in the first place then I would not know that i had LCIS. knowing about something is not always the best thing.
you take care
love
gaynor x
hi sally
thanks again for the info its nice to know you are ok after it and you don’t sound like you have any regrets. I have a couple of weeks mulling it over then I need to get back in touch with the breast care nurse and let her know what I have decided.
take care
love
gaynor x
the tendency is towards over treatment nowadays. Not sure I would have had the DCIS out knowing what I do today. Mind you I did have low grade DCIS
LCIS is another thing. I definitely would not have it removed.
Mole
NB if you look under information on this site there is a section on LCIS which is worth reading. It’s under non invasive breast cancer and is worth a read. It suggests it doesn’t normally require treatment. this is the link
breastcancercare.org.uk/content.php?page_id=163
Mole
I had a mastectomy in March and have extensive LCIS in both breasts. I would rather have the other breast removed, partially cos I don’t want reconstruction and feel lop-sided and yucky and partially cos it would lower the risk and worry of it turning into something more sinister. Everyone is different on how they view the situation they are in.
I have regular mammograms etc to keep an eye on the LCIS.
Basically, everyone is going to have their own opinion on what you should do. At the end of the day, you have to do what you feel is best for YOU!
Hope you are able to come to a decision,
Best of luck,
Jacki xx
hi jacki
thanks for your comments I went to see my doctor today and he said they have put me at high risk same as family history and i would be mad not to have it done, it would give me peace of mind, he also said they would not have suggested double masectomy if there was not a high risk of me getting the cancer. there was a concern over my results so i think i will be taking that root, its just scary.
hope you are ok
love gaynor xx
hi sally
been to doctors today and I have decided to go ahead, if you read what i have put above you will see why.
hope your ok
love
gaynor x
hi mole
thanks for your information hope you are ok
love
gaynor x
Hi Gaynor,
I had my mastectomy and not chemo or rads as both tumours were smaller than 2cm and there was no lymph node spread. I am on hormone therapy though. The mastectomy wasn’t too bad. Pain was minimal. Looking at myself was hard as first, but eight months on I’m just fine about it. I’m still every bit a woman (46) as I was before!! I had to take it easy for a while, but I just listened to my body and I managed. Driving is still a bit uncomfortable (left side) but a cushion helps the seat belt from rubbing.
You can still get breast cancer without breasts, but the chance is greatly minimized. Listen to the experts, but also to yourself. Make your decision, feel good about it and take one day at a time.
Wishing you a long and happy life (with or without boobs!)
love,
Jacki xx
hi jacki
hope your ok did you have reconstruction done, if so did you have it done at the same time or later and what sort of reconstruction.
take care
love
gaynorx
Hi Gaynor,
I’m glad you now know what you’re going to do - it’s much better when you know what’s happening. As I mentioned in my earlier reply, I had immediate reconstruction done and am very glad that I did - you go to sleep with breasts and wake up with them. I think I would have found it much harder to have nothing there. My reconstruction is really good (don’t have a nipple yet, but should hear about that next week when I see my plastic surgeon) and now that it’s settled down, it matches my right one. I had a small implant as well as stomach tissue (DIEP reconstruction) and my surgeon got it spot on.
If you have any questions about the mastectomies and/reconstruction, I’ll be glad to help. Sometimes I wish I’d been offered a bilateral mastectomy as LCIS often appears in the other breast at the same time or later, so I’m worrying about that one now!!
Boobs are a lot of trouble, aren’t they!!?
Love to you,
Sally xx
hi there sally
thanks again I was never given option of having one done they just said I would need both doing, going to get in touch with nurse and get the ball rolling, I will be glad when i get a good night sleep my head is just so full its giving me a headache. I was reading through the cancer bit and a lady was told she had LCIS in jan of this year andf was told to leave it and went on to get invasive and was suppose to be having her masectomy in october hope she is ok. I think alot of the woman who get the invasive lobular cancer already have LCIS but they don’t know unless it is found by accident eg lump removed, biopsy etc as it is not usually found on a mamogram.
hope you are ok
love gaynorx
Hi Gaynor,
I didn’t have reconstruction. Always hated my boobs - darn things get in the way! I’ve never felt any less feminine with only one breast. I look at my scar and feel proud that I got through this terrible ordeal with a relatively positive attitude.
love,
Jacki xx
hi jacki
I feel I need something there would seem funny not having any. I am 42 and single and I would find it hard to go into a relationship, you prob think i am mad but thats just me. you sound a very strong possitive person you should be very proud of yourself.
take care
love
gaynorx