Recurrence after 5years

homealone · May 2009

I never thought that I would be coming back to these boards for support.I was first diagnosed with IDC five years ago,Jan 2004,Grade 1 and Stage 1,lumpectomy and radiotherapy plus five years of Tamoxifen.I went for my five year mammogram on May 13th [unlucky number!!] and I now have the same cancer in my other breast,small tumour,external cells estrogeon + progesterone-.The question now is what treatment to have.I am told I can have a lumpectomy with radiation and will not need chemo.However having done everything to the book so far and still have a new primary in the other breast in less than five years,I am wondering if now is the time to have a bilateral mastectomy.I have very small breasts but have become quite fond of them over the years!! The choice is mine and what a choice.This time I have not rushed into making a decision and am seeing a top professor in breast surgery on Monday.I have already made the decision that the only reconstruction I will consider is implants,however I have read up on all the complications plus the discomfort of expanders and as I am 62,but feel 42!! common sense tells me to go for bilateral mastectomies I cannot imagine myself with perky boobs and a wrinkly body in years to come,also I cannot imagine myself without boobs,what a dilemma.I have read all the studies that state once you have had one breast cancer your risks are higher to get another but I cannot find the risk factor of third time around if I were to have another lumpectomy.I would love to hear all your opinions.I have a strong family history but do not carry the Braca1 or 2 default.

jader · May 2009

For me, I had only one mast .. and wish I had the other removed. The stats are higher to have it again and I now I know this ... I am glad you are meeting with a knowledgeable source to guide you. The first time around you really make quick decisions because they must schedule for surgery right away.

smithlme · May 2009

I am so sorry you are back again with a new diagnosis. I was diagnosed the first time on March 28, 2007. I had a unilateral mastectomy and 4 dose dense AC followed by 4 dose dense Taxol. This cancer was a triple negative. 7 1/2 months later I went for my yearly mammogram and was diagnosed with a new primary in the other breast. I chose to have another mastectomy and genetic testing. I am a BRCA 2+ and chose to have a hysterectomy w/BSO last June.

After a failed TRAM I have decided not to have any reconstruction. I went from a 36DD to zippo. In October I will have scar revisions on my abdominal scars and chest to smooth out the remaining skin. I just turned 50 earlier this month and I am happy with my decision. My life and happiness are worth more than two breasts, breast mounds or any amount of surgery and pain it would take to look "normal."

Best of luck with whatever choice you make. Find the one that is right for YOU...

Linda

angeljoy · May 2009

homealone, My heart goes out to you on your new diagnosis. It is something we all fear. I had cancer in one breast and was told lumpectomy and radiation were an option, but I opted for bilateral mastectomy 18 months ago and have never regretted it. I know far too many people who had a lumpectomy then needed a mastectomy later. The fewer surgeries the better, in my opinion. I had ILC which is more likely to show up in the other breast, so the bilateral seemed safest as well. Usually with a mastectomy, you don't need radiation, but just be aware that depending on final pathology, you might wind up needing radiation too. That is what happened to me. I went with recon with implants and when it turned out I needed radiation, the PS told me it would be harder to get a good result. He was right. Due to the radiation, one implant failed and it had to be removed. A procedure using my own tissue would have had a better chance, but flap or DIEP surgery is just not for me.I still think I made the right choice for me even though it did not completely work out. There is so much to take in and there are so many choices. You are doing the right thing by consulting the best doc you can find to help you sort it all out. You will know in your heart what is the best choice for you.

Angela

lookingforward4more · May 2009

I too have a family history but am braca negative. I had multi-focal cancer in my right breast and originally had a single mastectomy with implant reconstruction. Over the next ten or so months I just got to feeling like I should have the other side done for safety reasons. One of my main concerns was that they had mis-diagnosed my calcifications as "benign" and they were, obviously, not, and this set me back to a Stage 2b instead of possibly a 1. SO...I don't trust the tests, etc. that they used on my breasts.

I had a prophy mastectomy on the left with skin sparing and immediate implant when I had my exchange on the cancer side, so I woke up with two "breasts". I am really happy with my D cup breasts. I would LOVE to have my middle aged breasts back but I have cleavage again and for me thats nice. I had nipple reconstruction too and they look real but I do miss them most of all!

Good luck with your decisions!

Emily2008 · May 2009

Ugh, homealone, I'm so sorry for your new diagnosis. That's what we all fear. I'm glad you're getting some good advice and taking your time as you figure out what to do. I felt like every decision I had to make with breast cancer was an impossible one. I was always trying to choose the lesser of 2 evils, KWIM?

When I was first diagnosed, my surgeon was very pro-lumpectomy/rads. I started out on that path b/c it seemed to be less "extreme" than the mast. When the margins weren't clear and we found out there was more than one tumor, I was faced with the decision of a re-excision, or a mast. After a month-long, agonizingly difficult period of time to think, talk, read, and pray, I decided to have a mast on the affected side. I had a TRAM, which was successful, and have no regrets. Unfortunately, 3 months later I learned I was BRCA 2 pos (don't ask me why none of my docs recommended I get tested! I was only 35 at dx, but it was my idea to do the gene test.). For me, it was a no-brainer to have the other breast removed prophylactically. The odds were way stacked against me for having another primary, and battling cancer once was hard enough, as you know.

I have an expander now, and will have my exchange on June 4. It hasn't been an easy road for me, but I'm happy with all my decisions. I really need to have breasts. I'm 36, with 3 young kids, and for me to feel completely healed, breat reconstruction was important. I know not everyone feels that way, but I do. My breasts were always a C/D - cup, depending on my weight and the bra, and I knew I would miss them. I still do miss them, as saggy as they were after nursing three kids! But, these reconstructed ones are *something* at least, and I look decent with clothes on.

As I said, impossible decisions, I know. Take your time, talk it over with knowledeable people, and then go with your gut. Had I listened to my gut at the beginning of my journey, I would've been gene tested and my surgical outcome may have been different (i.e. 2 implants, rather than having to match up one TRAM with one implant). We can only go on the info we have, so arm yourself with as much as you can learn. Best wishes to you!

Erica3681 · June 2009

homealone,

I was just like you--stage 1, grade 1 IDC, lumpectomy & rads plus tamoxifen. I was happy to conserve my breasts at that time. But three years later, I was diagnosed with DCIS on the other side. I was grateful that the cancer was caught even earlier than the first one, but the DCIS was very extensive and a mastectomy was recommended. So, I decided to have a bilateral mastectomy so I could minimize my chances of ever having to go through this again. I was 57 at the time, slim and active, but I'd never been interested in reconstruction. I asked my surgeon to give me as cosmetically pleasing a result as possible and I now wear lightweight, comfortable breast forms.

I felt so strongly that not reconstructing should be presented as a positive alternative to reconstruction that I created a non-profit website, BreastFree.org. You can read my story (Barbara's Story) in the Personal Stories section. You might find the other stories and Photographs section helpful, plus there's lots of other information and support on the site.

Barbara

desdemona222b · June 2009

Hi -

Sorry to hear about your new cancer - that's the thing we all dread. I'm 7 years out and I've already made up my mind I'm going to have a double mastectomy if I get breast cancer again. I'm resigned to it.

It sounds like you still have a good prognosis and I know it's a really hard decision, especially if you're still fairly young. Wishing you the ability to make up your mind and be at peace with your decision.

homealone · June 2009

Thank you all so much for your replies.I went to see the Professor today and I am feeling really down.I found out that I am Her2+++.His recommendation was

1.Lumpectomy + radiation +chemo and Herceptin.He said this would take 18months!!I Surely this can't be true.

2.Mastectomy +chemo+Herceptin

3.Bilateral mastecomy,if that is my choice,+chemo+Herceptin.

All this comes as a shock as I was told very small tumour and no chemo needed,that was until the Her2 report came back.Obviously things could change once I have my surgery and see if the nodes are involved,but right now that doesn't seem to make any difference.

I am petrified of doing chemo with all its side effects.I asked why I can't just have the Herceptin but was told it is more effective with chemo and that is how they administer it here in the UK.I have read on these boards that some people do just the Herceptin but that appears to be only in the US.

If only I had a bilateral mastectomy in the first place I would not be facing this today.Hindsight is a wonderful thing.

I think I will have the bilateral mastectomy,but as for chemo I just can't get my head around that one.Words of wisdom are needed from you all.

desdemona222b · June 2009

Oh, homealone, big hugs to you this morning. I'm so sorry!

There are many ladies on this board who have gone through chemo, some of them several times. I know it's scary, but many of them have said the fear of it was worse than the actual chemo. I'd be frightened too. I'm sure they will be along to offer you solace.

ddlatt · June 2009

dear homealone, so very sorry you are faced with this situation. i was terrified of chemo also, really terrified, and did everything under the sun to prepare for the worst side effects. i had 4 cycles of AC and four cycles of taxol. never did any of the worst things i imagined happen to me, and my experience is common. i had all the usual side effects of AC and taxol, but there was never a day i was in bed all day feeling awful, i was never helpless, i never threw up, and i continued my regular life pretty well. i'm now one month and one day away from my last chemo, and looking back, it's a lot like childbirth - it wasn't a walk in the park, but now i can barely remember it. my fears of the unknown were by far the worst part of it. i'm very glad i had it and would do it all over again if i had to, now knowing it wasn't so bad, and i do like having that extra confidence that i have done all i can to kill any remaining cancer cells. i'm also very happy that i had the bilateral mastectomy and never have to deal with mammogram or that dreaded letter in the mail with the results. i absolutely love not having to wear a bra! i opted for no reconstruction and love my new body. i'm going through radiation now, which is very uneventful. you have lots of support here, and i wish you peace with your decision.

erica - bravo for your efforts with breastfree.org!! the first surgeon i consulted with argued with me about my decision to have a bilateral. it amazed me that she would be pushing breast conservation on me, even after i told her i was adamant about having a bilateral. some docs just don't get it.

homealone · June 2009

Thank you all for your replies.ddlatt,I am most grateful for your response I feel that you understand where I am comimg from,I just cannot get the fear of chemo out of my mind,but I will have the treatment.I now have a date for surgery June 24th but I have to see a psychologist first as that is the protocol here before you can have bilateral mastectomies,is it the same in the US?You said you had all the usual side effects from chemo but will you please explain to me what they were.

It has been a lovely summers day here and I have been busy in my garden and for a few hours breast cancer was not given a thought.

Reni · July 2009

Hi homealone... I really feel you. I'm from London and my mother had BC back there many moons again.

I just had a recurrence in May and chose to have the BiMx thinnking I wouldnt need chemo and found out today that they are strongly recommending chemo. I had lump/chemo/rad first time around and vowed to never do chemo again. Easier said when not faced with the decision Tongue out

FYI - my right breast was clean from all the MRIs etc but after choosing the BiMx the path report came back with DCIS in that breast so I'n sooo glad I did that. I'm told chemo now is much less difficult than it was 7yrs ago... so I'm hoping this is the case as even though I swore never to do chemo... I'm not sure I can live with myself if I do not do it.

homealone · July 2009

Hi Reni

So sorry to hear that you have another cancer after 7 years.Is this a recurrence or do you have a second primary?The first time round for me was 5 years ago and I had a lumpectomy followed by rads, the tumour was er+pr+ HR2 - but this time round the tumour is in the other breast and is er very slightly + pr- and HER2+++ so I chose to have bilateral mastectomy which was done on the 24th June.I came home from hospital on Monday and I am feeling very sore,tired and very weepy.I was told, from the biopsy report, that the tumour was small and they could get good clearance and chemo would not be necessary.The reality after surgery is that the there were two tumours within 3mm of each other,one invasive,one dcis but they add them together when deciding how large the tumour is,so now I have a 1.5cm tumour with lymphatic invasion,node negative but HER2+++ which all adds up to chemo followed by Herceptin for 12 months and rads as the tumour was close to the chest wall.I have found this second diagnosis very difficult to cope with,I just feel everything is doom and gloom.maybe I am over reacting and probably not in the best place following surgery to be making any decisions re chemo etc,perhaps when I have been home for a few days I will feel better.Right now I just want to bury my head in the sand and hope it will all go away.

Have you had your surgery,if so how did you get on and how are you feeling now?Are you attending the Royal Marsden?

Whereabouts in London are you?I have been watching the tennis and noticed how high the temperatures were.I live in the isle of man so our temperatures do not get quite so high due to the sea breezes.Great tennis,I do hope Murray wins Wimbledon.

sushanna1 · July 2009

Homealone--I will pass along the advice given to me by my grandmother's cousin who went through chemo twice. I think that she was close to 80 years old. It's not pleasant, but we are strong women. You can do this.

Good luck

Sue

PS I spent five days on the Isle of Man in 2005. What a lovely place.

homealone · July 2009

Hi Sue

Pleased to hear that you have visited our island,not everyone even knows where it is.It is very safe here,very little crime,not like the UK,and we have beautiful scenery as you know.Where are you from?

I will take your grandmothers words of wisdom to heart.It is most encouraging to hear such stories.

Recurrence after 5years

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