I was just wondering if anyone else there who has secondaries (mine include liver and bone) has been offered surgery. Because of my response to chemo and hormone therapy, i have been offered a mastectomy (and recon if I want it). I am constantly being told that it is unusual for those of us with secondaries to be in this position. Is there anyone else out there in the same position who has had surgery, declined surgery or is also in a position where they have to make a decision about surgery?
My position isn’t quite the same as yours, but I’ve spoken to my onc about a pssible lymph node transplant and he’s willing to consider it should there come a suitable point in the future.
There was some research mentioned recently in the Press about surgery on the primary tumour (I take that’s what yours is?) having a very beneficial effect on length of surivial for patients already diagosed with secondaries.
yes it would be removal of primary site. there is anecdotal evidence that removal of primary site can extend life expectancy in secondary patients, but as with all things there is a cost, mainly having breast removed with either a pretend one on the inside or outside (that’s how i see it anyway) and with node clearance, issues of risk of lymphodema and any other curtailments such surgery imposes. however, there have never been and I am told are never likely to be any studies into this area, so there are no guarantees. it is very hard making a decision and after seeing the breast nurse yesterday, I felt thrown into more confusion, probably because of the amount of information there was to digest. I think the main thing is how will i cope phsycologically without a breast. I am leaning towards not have reconstruction, mainly because I want the least internal interference possible and because I want a quicker recovery time, so that if my life isn’t extended (which I will never know) then I get to spend more quality time with my husband and children. On the flip side, I could have just as long without having any surgery. So I could go through surgery for nothing. It’s all so hard to make a decision when the factors I have to base it on are not tangible. Also, I could be here in a year’s time wishing I had gone through reconstruction. I hate this disease so much.
Would be interested if you do know the thread and if it relates to same studies my onc has been quoting. I think one was in Holland. The main thing is removal of primary tumour in secondary patients is only offered if the patient is responding really well to treatment.
I had mx and full anc 2 yrs ago after 5 months of chemo. They did the chemo first as the tumour (which turned out to be 2) had to be shrunk as a priority. I had a bone scan at diagnosis in July 07 but the results went astray and only came to light when my surgeon was reviewing my case notes for a post surgery check-up. It turned out there were bone mets.I then had a 2nd scan when this was picked up and some of the hot spots in my spine and rib had disappeared because of the chemo. I was told that my treatment would have been the same and in the same order even if the original scan results hadn’t gone missing - ie as long as my reaction to chemo had worked to a reasonable extent, they would still have done the mx. I was put in my own room in the hospital as I had finished chemo only 4 weeks earlier but that was the only ‘precaution’ they took. My scar healed well and it was good that they did the surgery as they also found vascular invasion and 12/22 lymph nodes affected even after the strong chemo. I then had 15 high dose rads over a large area of the chest wall, shoulder and side and apart from the usual bit of burning, my skin and scar were fine. I was never offered reconstruction but personally wouldn’t have had it anyway. I have a prosthesis and wear it with a pocketed bra and for the most part no-one would ever know.
2 and a half years down the line, I am retired from work and finally settled in my ‘new’ life and am on Zoladex, Arimidex and Zometa. My last scan in December showed the bone mets were stable and I hope it continues that way for as long as possible! The surgeon was great and my scar has been much admired by the medical folk and I’m sooo glad they did the surgery - my 9 inch scar is a small price to pay in my book !
Sorry for waffling on - hope some of it makes sense. If you have any questions, just shout.
Liz
PS Just bumped a thread from last year for you - ‘mastectomy with secondaries???’ is the title…
I have just read the thread and posted a comment. my onc always says that if you have secondaries then you have secondaries and they won’t necessarily all be found. Initially there was a question mark over mets in my spine, as the ct scan and bone scan didn’t corroborate. However, a recent ct scan showed healing in the bone which proved I had mets there. He said it didn’t matter if they saw them or not as the treatment I was having was a whole body treatment that would hopefully find and kill or shrink any cancer in my body.
How do you get on with your prosthesis? The nurse I saw yesterday did mention a few times that I wouldn’t be able to wear low cut tops if I didn’t have recon. I guess it’s weird losing a part of your body, but the potential gain of more time with my family makes it worth the trade off. In myself I feel confident about not having recon, but other people’s comments make me question myself. Good I suppose in that I have spent the last 24 hours questioning myself and have come up feeling that no recon is still the best option for me. Do feel for my hubby, though, I know he will support me whatever my decision. My boobs grew each time I breastfed, so he’s only had the benefit of me having a good cleavage for the last 6 years! I went from a 34b to a 36C to a 38c! Good job I stopped at 2 or I’d really be looking at being lopsided!!! Ha Ha, gotta laugh! So much for breastfeeding preventing breastcancer!
I get on fine with my prosthesis - it’s an amoena light one but you can get stick-on ones. As I have very sensitive skin anyway, I passed on that one. Not sure if it’s common practice or not across the NHS but round here we can have pockets put in 3 bras and 1 swimsuit/bikini per year FREE of charge !! I’ve used bikinis where they have that padding you can leave in or take out, although I tend not to wear my prosthesis on beach cos I can’t be bothered and it’s only obvious to those who look !
I’ve never had kiddies but have found that my bra size has gone from a 34B to a 38D due to the extra weight I’ve put on with the drugs. Yes, I’m lopsided but I laugh about a new enhanced cleavage !! Sounds like we think along the same lines and yes, you’ve gotta laugh about it all as far as poss.
Do let us know how you get on this week. As for the surgery itself, I only had to have paracetamol for a couple of days and that was it. I’d never had an op before or been in hospital so didn’t know what to expect really but it was far less traumatic than I had expected.
I have had surgery before. A 7 hour operation to correct defects with my jaws and nose, including having bone sawn from my hip and put in my chin! ALthough my quick recovery from that surprised everyone!.
I am on paracetamol regularly now anyway, so not sure if that would mean I’d need something stronger for extra pain. THe drugs to take the oestrogen out of my body have affected the lubrication of my joints and I get a lot of bone pain and walk like an old lady when I get out of bed in the morning. I have been told it’s similar to arthritic pain.
I think that deep down I just want to get done what needs to be done, recover and get on with my life. Having a reconstruction doesn’t really fit that bill, does it? Its good to have contact with someone who has gone through a similar thing and seems settled with not having recon.
Reading some threads I understand that there are a couple of good mastectomy bra shops in the Hampshire area, Chichester and Chandlers Ford if I remember correctly. I am not in Hampshire, but the drive is do-able.
I have gained weight too! About 2 1/2 stone since diagnosis. Onc has suggested a low GI diet. Easier said than done as I don’t eat red meat (or any other animal that has live births) and I don’t consume any dairy products either. Still I try!
About the lopsidedness, I told hubby that I would be able to get closer to cuddle him without a boob in the way!
I will have to find out about what is offered on the NHS. I should (snow permitting) be seeing my GP tomorrow for my zoladex implant.
I had a mx 4years ago, I didnt want a reconstruction. I didnt have any painkillers after the op (didnt need them) although I was sick. I only had stiffness but no pain. Had the op on the Monday and was in M&S treating myself on the Saturday, I think I should have rested more!
They gave me some soft ‘stuffing’ until afterthing had healed then I got a Truelife light which I love. I’ve got lots different pocketed bra’s but I ware an Anita pocketed bra that has a little camisole lace across most of the time-this means I can ware any top I want. I’ve tried the stick on prosthesis but prefer my pocketed lacy bra’s which I have in cream, black and white. If someone ask’s me which side I had the Mx on, I’m not sure - I have to put my hands on and feel and then I’m still not sure…lol
My sec were diagnosed a year after my primary. If I was offered a Mx with sec I would take it-not sure why.
This is my understanding, so anyone please correct me if I am wrong.
There have been retrospective studies showing that women who respond well to treatment of secondaries may gain more life expectancy if they have the primary tumour removed. However, there have never been and probably never will be any medical studies undertaken. I think one of the retrospective studies was done in Holland, but understand that it is common practice in some other countries to have maestactomies when secondaries are discovered at same time as primaries.
From reading other people’s experiences, their treatment and options can vary just because of their oncologists. As with most things, it may be worth you seeking a second opinion.
At first the attitude for me was one of the horse has already bolted, but it was how I responded to the treatment that changed that view. I have also always maintained very strongly that I would consider any option to allow me to live as long a quality life as possible.
Hi Snoogle (and everyone)
This is a question I keep asking! ie mastectomy after bone mets. I had a local recurrence and the scan then showed bone mets. I have several responses from my oncology team, all of who have said any recent research was such a limited group of women/race type/nationality etc that the results reported were not conclusive that surgery will increase life expectancy. I’ve also read quite a few threads on here over the 20 months or so since my secondary dx and know that other countries operate anyway if there is a primary/recurrence and mets. Equally there are several women on here who have clearly responded well to treatment and still have the local recurrence/primary - me included (so far anyway!) One of the answers I had from my original surgeon was that any operation can compromise your immune system and that in itself can cause problems as your immune system is part of how you body deals with BC. What a quandry!
Any hard facts would be gratefully received by me as well!
Nicky x
I had secondaries (bone & lung) diagnosed pretty much as soon as priamries were diagnosed. Straight into chemo and then had mastectomy to remove the pimaries followed by radiotherapy.
There WAS “discussion” about this path. One cons was of the opinion that it at least stopped any futher metastases from breaking away from the primary and “landing” in an organ not already affected wheras another was careful to point out that surgery was not a cure; as the primary had already metastasised, there could still be cancerous cells lurking in the system which might yet settle in a currently unaffected organ despite having the breast removed.
In the end, it was left to me to choose. I chose mastectomy on the basis that I’ll worry about what HASN’T yet happened if & when it does…
Hi
Just wanted to make a comment about mastectomy and asked about recon when they removed but was told no. Decided to managed without recon as i did not want to go through another operation. To start i hated it…but now i donot even notice i am wearing my little friend (as i call it). Clothes are a problem and it depends on the fashion at the time that has caused me the most difficulty.
My view to clothing now is wear it if you like (Not too low neckline) and if anyone is looking down your top and gets a suprise that is there problem. I am still here even with secondary cancer and at the end of the day it is just a boob. I do realise that some people will not be have this outlook and i understand as i was like that to start. Life is a little too short to worry about this for me.
Good luck with your treatment and your hol.
I had my first mastectomy to remove the primary tumour in 2007 after chemo and then had radiotherapy. I had my other breast removed in October 2008 after suffering with neck and shoulder pain and being fed up of being neither one thing or another - one beast no breast. This was personal to me and I have not regretted it. I can wear a bra and my falsies if I want/need to depending on what I am wearing but feel I now have the best of both worlds. But that is just me. I am 50 years old now and still like to look trendy, attractive and sexy and feel that I am still able to do this. I breast fed both my children for a year each and gave them the best start I could, they are now 14 and 16. I was sorry to see my breasts go but they had been absolutely lovely and I have a lot to be grateful for.
The thought of the reconstruction operation and the compromises to the rest of my body to enable it to be done were just not an option for me. I wanted to get on with my life and get back to all the physical activities that I enjoyed.
I have been unfortunate to have been diagnosed with secondaries however, but none of the decisions I have made would have made any difference to that.
I googled mastectomy+secondary brast cancer and saw work done by Marrow and Goldstein in 2006 in the States- there was a lot to read and I didnt have time to understand it all, you might like to take a look.
Thanks for all your comments, I was supposed to see the surgeon today with my decision but because of the weather my appointment was cancelled, due to see him on Monday, if the snow goes by then! However, I think I will go for the mastectomy and axillary node clearance. Has anyone else had ANC and, if so, how has this affected their lives?
thanks liz, it would be appreciated. Forecast is for more snow here tonight and Sunday, so will have to wait until Monday morning to find out if appointment will go ahead. I have been concentrating so hard on the maestectomy with or without recon, that I probably haven’t given as much thought to ANC as I should’ve.
Right, here goes, I’ll try and remember relevant things but I’ve still got chemo brain 2 yrs on (I’m sticking to that excuse anyway!).
The surgeon warned me when he came to see me before the op (my orig surgeon was ill so this was a new person I’d never seen before but he’s brill!) that he may have to go higher up towards my collarbone if he thought it was needed or there was any doubt about lymph node involvement - they already knew there was some but not sure of the extent. Anyway, he did have to go higher under the skin and take tissue away as well and then go right under my arm to remove all lymph glands. The pathology report later showed that 12/22 nodes were affected even after chemo and there were more affected at levels further away from the breast so it was a good job he did go further! The scar is very neat and hasn’t puckered or anything - my OH says he must have had a very sharp knife. I did get a very deep ache in my shoulder after surgery which got worse so I rang the bcn and they referred me immediately for physio. The physio dept here prioritise bc patients apparently. I then had lots of physio but still developed mild lymphoedema which they then treated with more physio and then I got a frozen shoulder but they sorted that too. It was a case of prioritising ailments !! I have a sleeve for my arm but don’t wear it anywhere near as much as I should and I’m not supposed to lift heavy things or put too much weight on that side and deffo no injections/blood tests on that side. I’m lucky in that they caught it early and monitor it but not everyone is as lucky and of course some get it much worse. Equally some people never get lymphoedema - there’s no telling who will and who won’t get it.
I’ve got sports-type bras from M&S and Primark and didn’t bother with the specialist ones. You really have to try them on no matter where they’re from. The ones I’ve got are cotton with a bit of lycra and definitely not underwired - that’s a no-no if the scar goes towards the underarm and you’ve had anc and rads as it can encourage lymphoedema through extra pressure.
Also I did experience numbness in the underarm area, across the chest area near the scar and all along the underarm down to my elbow after surgery. Some bits have come back but a lot hasn’t and won’t as it’s due to the nerves and muscles they had to cut through.
On the weight thing, I put on 2.5 stone as well and was mortified at first but it settled down and I haven’t put any more on in over 12 months. Went from a size 8/10 to a 14 !!! Excuse for a new wardrobe…
Sorry to have rambled on and hope this hasn’t scared you too much. There’s no way I would have refused surgery and I’m really not bothered about the lopsided aspect and don’t want recon. I think I’ve come through this well and regard it as a small price to pay for the chance to get more time and make the most of it while I’m able.
Can’t think of anything else at the mo but feel free to ask anything that may crop up !