Today I was told that I have Invasive Ductal Breast Cancer grade 3 in my left breadst, 7 years after having a mastectomy to remove a large tumour in the right breast. I’ve been told that this is a second primary breast cancer nothing to do with the first which was an entirely different type. I’m devastated to have to go through this a second time, it seems so unfair as I also have MS and although I had an implant after the last mastectomy had to have it removed as I developed lymphodeama and cellulitis. The doctor also said that a reconstruction would not be possible because of the damage caused by radiotherapy 7 years ago. Anyone have any positive comments that could help, I’m feeling very down and emotional, just want to sit and cry which isn’t very helpful at all.
Hi Cassandra,It’s not something I’ve experienced but i just wanted to send you a gentle hug. Maybe give yourself a space to have cry for now and then you can get on with the treatment. You’re right - it’s not fair.
Hi Cassandra
So sorry to hear about what you are going through. I think sitting down and crying which, while it might not be very helpful is perfectly understandable.
Do you have an appointment coming up to sort out a treatment plan? Think it helps to feel like you know what’s happening, then you can start to focus on how you’re going to beat it again.
(((HUGS))) Laurie x
Dear Cassandra
I am sorry to read that you are having such a difficult time at the moment, can I suggest calling our helpline, they can offer you a listening ear and support along with ideas of other forms of support from BCC, the lines are open weekdays 9-5 and Sat 9-2 on 0808 800 6000.
Take care
Lucy
Hi Cassandra
I had a primary in the right side 5 years ago and then a completely unrelated primary in the left side 2 years ago and since had a recurrence if that one 3 months ago.
As for the treatment options why not ask for second opinion in regard of the reconstruction. Many people have recons after rads. Some may prefer not to use implants but flaps of your own skin so it could still be possible. Many breast surgeons carry out breast reconstruction surgery although they are not plastic surgeons so my advice would be to ask for a refrral to a plastic surgeon or a different one to who you saw previously for a second opinion.
I didnt have an mx both Tumours were pretty small so had a lumpectomy. 1st bc was grade 1 hormone positive and didn’t need Chemo. 2nd one was grade 3, hormone negative and did need chemo. 3rd one is in nodes in chest muscle and not in the breast do after surgery I just started on chemo last week.
It’s a very scary place to be getting a second primary and there aren’t too many of us about. Hope you can get some definite answers
Lulu xxx
thanks so much for all your comments and good wishes. I have an appointment with another general surgeon on Friday whose clinical interests are reconstructive and cosmetic breast surgery, although at 65 having had so many problems following the first implant I’m not sure I want to go through it all again.I think I’m now coming to terms with the news and feel it was the shock of being told it was nothing serious and then a week later being told I had breast cancer and would need another mastectomy yet was given no literature or help. I phoned the help line and spoke to a volunteer who was a terrific help and I’m hoping that on Friday I’ll find out what other treatment if any I’ll need. Hope your treatment works out well Lulu, you seem to have had an even worse time than me. This helps too having other women to moan to, but I’m beginning to feel a bit more positive now.
Hi Cassandra,
I have just read this thread (usually post on the DEIP Flap thread). However, like you I was DX last Oct with BC Stage II Invasive had MX Oct and recon this April. All going tickity boo told remote chance of it coming back then End May found another lump in my ‘good’ breast and was DX with invasive Stage I and had to go thru all the misery again another MX in June and recon Aug. Both Primary Cancers and not related to each other. Didn’t have to have chemo/rads for either MX which I know is fortunate. But in the course of 8 months got it twice. It’s devastating and my BS said that it’s most rare to occur like this. But it happened. The coming to terms with it is really hard so know just how you feel it certainly does your head in mentally. The hospital most definitely should have given you some literature etc. I had a PS to do my recon which in both cases (he did both) have been really good. As Lulu says seek another opinion, you are allowed! I’m 65 too and at times feel 165! But hang on in there, everyone here is understanding and having a moan or whatever is so acceptable! You should have a Macmillan Nurse or similar with you when you see your surgeon(I did at Worthing Hospital) she gave me leaflets to read about recon before any decisions were made and it was entirely up to me what surgery I wanted to opt for, I had a BS who did recon but the DEIP Flap is undertaken by PS as it’s specialist. Hope all goes well Friday, Hugs and positive thoughts to you Chrissyxxx
Hi cassandra,
I am glad to read as the days have gone on that you are more able to come to terms with what is happening. To have to cope with this yet again on top of having MS must be so hard.
I also had 2, in fact 3 unrelated primaries, and one more that was related!! and the encouragement I want to offer you is that mine all kicked off 21 years ago, then 5 years later I had another tumour in the same breast, then 2 years on from that another in the other breast. They were all a fair size - at over 5cm each. When I look back on it all now the memory of it all, and the treatments has faded. o.k I do have bone mets now since 2002 but just get on with life.
I hope all goes well with your meeting with the surgeon. I am similar age to you (66) and have never wanted reconstruction but I am sure if that is the route you want to go there are possibilities. This has all come a long way since I went through mastectomies.
Dawn
xx
Thanks Dawn and Akitarose, it sounds terrible I know but it is reassuring to hear from others who have had similar experiences. The op I was supposed to have today has been postponed until next Thursday as the CT scan has shown up an enlarged lymph node behind my stomach of all places. I get the results tonight and will find out if I have to have chemotherapy before the mastectomy. I don’t know how I’ll respond if I find out that the breast cancer has spread, I just wasn’t expecting that on top of everyhing else. One thing it has put all thought of reconstruction right out of my head for the moment. I think I’ll just get throught whatever treatment and operation first and think about reconstruction at a later date.
I don’t think I ever thought I’d be saying that I’m relieved to have breast cancer, but I am. I’ve had the results of the PETscan which other than the cancer in the breast itself was clear. This means that the cancer has not spread as was thought might be the case because of the enlarged lymph node. It means that the mastectomy will be carried out on Thursday without any other surgery. I’m now rethinking the idea of reconstruction sometime in the future, but will obviously have to wait to find out whether any further treatment will be needed after surgery, but now know that hopefully I’ll be around to see my daughters and grandchildren grow older. Thinking I might miss out on our grandchildren growing up was the thing that I was going to say frightened, but that’s the wrong expression, made me feel very sad, depressed me most. Isn’t it funny how your priorities change, I just want the operation over so that I can try and return to some sort of normalicy and get on with life as dawn suggests.
Hi cassandra,
It sounds like you have been a bit of a mini rollercoaster the last few days. I am so glad for you that the enlarged lymph node does’t mean bad news :). I think you are quite wise to put the reconstruction thoughts on hold for now. It gives you a chance to concentrate on the forthcoming mastectomy and your recovery. I know what you mean about watching the grandchildren growing older - we have our first one (18mth now) and it is great to see them developing. You are right the feelings are of great sadness when you think you won’t be there. Will be thinking of you for Thursday in case I don’t get back to the thread to say it.
Dawn
xx
Hi Cassandra
I don’t come here very often now, but my story is exactly like yours (1st primary in 2003, second primary in 2010. However I did not have a reconstruction and now I have no boobs I feel more comfortable than I did with one.
Life is not fair, once is enough, but I wish you all the best. Look after yourself and let others look after you too. You can read my bc details on my profile. Please feel free to pm me if you like.
Hugs
Maria
Having been told that the BC had not spread, after the op they found it in 2 limph nodes so I’ve had to have chemotherapy which started off not too badly and I thought I can cope with this. However a few days later I became really ill and ended up in hospital as I was unable to eat or drink. While there I found myself in a very emotional state, I couldn’t sleep one night for crying and put my husband in a panic when I phoned to say I wanted to be home. The nurses were very good and said that I had recovered enough that I would be better off at home so the stay was cut to 2 days and I’m feeling a lot better now I am at home and can see my family even if they only pop in for a few minutes. I don’t know whether it’s a result of the chemotherapy, having a second mastectomy or the medication I’m on now but I’m having great difficulty switching off my brain and although I’m normally very optimistic I’m having a great deal of negative thoughts. Is this normal?