Hi all can someone please answer why some people only have a WLE then chemo rads …some have mastectomy rads no chemo and me Mastectomy no chemo no rads …really worried as a new lump has appeared under my mast arm ?
Hey Mazaroo
That’s a really really good question and I guess we don’t really. There’s certainly a logic behind all of the choices but it seems to vary massively based on an onc’s experiences, I’m starting to think there’s more luck involved than I originally thought. I had a really good chat with my consultant surgeon at my last check up as the rads really irritated my skin and there was some confusion over my treatment so we went through all my notes in detail to work out what had happened and it really helped fill in the gaps for me and he explained that there would be more inflamation yet etc so I was prepared for the general swelling I felt/ It sounds like you need to go see your BC Nurse and talk through all the side effects you may have and check that the lump is just one of them.
Good Luck with it and I hope you can stay calm in the meantime.
Angie
I am sorry you are so worried Maz - are they looking into it?
To answer your question, the treatment you are offered mainly depends on the pathology of your cancer. Added to that is the personal preference of oncs and surgeons as well as your own preference. My hospital has a multi disciplinary team system - they meet weekly to discuss each new breast cancer case. They don’t always agree with one another. I had isolated tumour cells in my sentinal node. Half the oncs and surgeons said I should have a full axillary clearance and the other half said I shouldn’t! Which just goes to show how much of medicine is simply about opinion.
I had a benign lump 10 years ago and had a lumpectomy. My cancer appeared directly under that scar so it felt like a recurrence and I didn’t hesitate to have the whole breast off. But I was offered a choice of MX or WLE. I was told that while there might be a reduction in recurrence risk with the MX there would be no change in mortality risk.
Originally I was told that with a mastectomy I would not require rads and if the cancer was grade 1 I would not need chemo. But the cancer was grade 3 and there was loads of vascular inavsion - so I needed chemo and rads. But my %age gain from chemo was fairly small and I was pulled off it after 4 doses.
What grade was your cancer? Did you have any vascular invasion? Any nodes involved? How big was the original lump? Are you ER+/HER2+?
All of these things factor in to the treatment that will be offered.
As to your bigger question of knowing if we are getting the right treatment, well medics are fallible and flawed - they get it wrong sometimes. It pays to educate yourself and to shop around - you are entitled to second opinions within the NHS.
I hope they help you out with that new lump asap.
Very interesting discussion. I was diagnosed in December 08 and I am writing this from my hospital bed, I am having a lumpectomy and node removal in the morning (0800 first in after the holidays apparently) and it is exactly the question I am trying to ask. How do they know that the lumpectomy is better than the mastecomy? no one has mentioned the stage or type of the cancer to me, I have been told I will have chemo and RT though. I asked how they know how many lymph nodes to take, apart from the enlarged one, how do they know the others are no affected?
They struggled to find the primary in the breast, it was 5mm and tucked away, so they just want to take that, I asked why not the whole breast, and as you said above it does not change the mortality risk (or as my Dr said “the prognosis”) I am no expert but I don’t get that (yet … but I am catching on quick). I am not scared to lose my breast, they can have it if it helps but they don’t seem to want it.
It is very interesting discussion and it seems to depend on where you are, the preferences of the surgeons etc etc… and the current national evidence available to them.My surgeon has regular team meetings and firstly they were going to take all my lymph nodes away. Then after my partner questioning that, they decided just 4 nodes. When the results came back, none of the nodes were infected.
I’m going to have radiotherapy with no chemo.
It is always worth questioning the proceedures, but that can be hard when you are in a state of shock. So it’s good to have someone else with you to hear clearly!!! Also the waiting times depend on what part of the country you are in. My sister in North Devon was waiting weeks after me just for her results of the biopsy.
Best of luck tomorrow HeidiB.
It seems that lumpectomies are generally preferred nowadays unless cancers are multi focal or the breast has a lot DCIS which makes breast conservation impossible.
The fashion now is for breast conservation. Personally I am of the school which believes that there are far worse things that can happen to a woman than losing a breast. If I’d had the wretched boob removed ten years ago I wouldn’t be going through this hell now.
I also had my ovaries removed by the gynae consultant soon after the mx - this enraged my onc for reasons I have yet to understand. Different medical disciplines like to squabble I think, that’s why they keep inter-disciplinary meetings behind closed doors.
I was told straight away that a lumpectomy would not be possible. If you have more than one tumour or if the tumour is near the nipple, a lumpectomy would look worse cosmetically than a mastectomy. My biopsy showed that I had a cancerous node. I think if a node is swollen, cancer is very likely. So I was told that I was almost certain to need chemno and RT. The pathology after my op simply confirmed this. If a lumpectomy is possible, this has been shown to be just as effective with RT as a mastectomy and women are usually given the choice.
Best of luck
I
MsMolly your story is incredibly like my own. My hospital has a team meeting too and I am Grade II. I also had isolated tumour cells in my sentinel node but did not have any further nodes removed, nor chemo or rads, just Tamoxifen. Was told chemo would only add a very small percentage gain and I was a ‘grey area’. I think it depends on opinion very much. Oncs may be of ‘the old school’ or take up the latest thinking. I had a mastectomy as my tumour was large but it does seem that lots of ladies are having lumpectomies. Like you Molly I also opted for oopherectomy myself as my tumour was 100% oestrogen positive. Oncs happy with that though.
Good Luck to Heidi. Grace
my tumour was attached to my nipple and i did not have amastectomy…my surgeon offered me the chance of an extensive WLE, where he took away about a quarter of my boob and he has left me with a beautifully shaped breast which i can choose to have a new nipple constructed for after my chemo and rads, he’d probably do it when he does my lymph nodes ( they found microscopic cancer cells in my sentinel node unfortunately), so it does seem there are many ways of tackling what seem to be similar cases.I just have to trust that my team know what they are doing!
I wasn’t given a choice really over my mx as my tumour was under my nipple as I was told cosmetically it wouldn’t work so I had to go the whole hog. They don’t do sentinal node where I am so took 9 lymph nodes during surgery (don’t know where they pick the figure from) and 1 was found to have what they call micro metastatses. Onc said chemo was up to me because a few years ago before they changed how closely they look at lymph nodes I would have come back node negative. I decided to go for chemo as he said it gave me an extra 5% and at 39 I want to give it all I can. They said that there was no chance of the cancer having skipped nodes and therefore no need to check futher ones (and as having chemo decided not to push) but I have heard that cancer can skip nodes in rare cases and therefore just because the sentinal node is negative or they do a level 1 clearance it doesn’t mean the cancer can’t have jumped through.
Interestingly they don’t check clavical nodes at all because of the way they feel the breast drains but secondaries do appear there.
Guess we just have to either keep shopping until we are happy (difficult when in a state of shock if talking initial surgery or further dx) or until we get answers we are happy with (if down the line).
I don’t think anyone can 100% reassure me as to any of the nagging worries that run around in my head in the small hours and after deciding to go googling!
Thanx everyone for taking the time out to answer my query i was grade 1 no node involvement and er pos …my whole breast was peppered with cancer spots and I had two lumps undert my breast that is all i know the onc saoid it was totally unstable and had to go !!! now this one has appeared under my arm pit and i am really hoping it is scar tissue fingers crossed x
Fingers tightly crossed for you Maz.
Grace - I was told by my surgeon that they feel Isolated Tumour Cells are more likely to be dislodged cells from biopsy/surgery rather than metastasisation.
There is a lot of debate over the efficacy of chemo for ER+ early stage node neg cancer. There are significant numbers of cancer specialists who think that chemo in ER+ women is relatively ineffective (compared to ER- women) and that hormone therapy is the absolute key.
I think sometimes people feel that cancer must equal chemotherapy and that hormones are simply a back up option - it just isn’t true.
In the next few years I personally think we will see more and more oncs rejecting the chemo option for early stage ER+ women altogether. There is no point subjecting the body to that amount of punishment and increasing risk of leukaemia etc if it is next to useless.
Good Luck.
Hi Msmolly,
I find your comments interesting but i was dx with er+ cancer that had spread to 5/9 nodes and had 7.5 monhts of chemo so I finding it hard to understand how do they know chemo is ineffective in early breast cancer?
Sukes
It is to do with relative %age risk reduction in early stage cancers Sukes. The %age risk reduction derived from chemo is larger in women who are already at greater risk of recurrence.
Part of the problem in defining how effective chemotherapy is for this group is that women who are ER+ and have chemo will also have hormone therapy too so it is very difficult to get precise results in studies. There is a theory that much of the gain of chemo in early stage cancer is due to the cessation of periods caused by chemo and that the efficacy may only last 2 years.
Studies have already proven that chemotherapy is simply not as effective at dealing with ER+ cancers as it is ER- cancers.
I know they don’t like links being posted on this site so here are some interesting studies if you feel like Googling …
"Adjuvant chemotherapy for early stage HER2-negative breast cancer "
“EARLY BREAST CANCER (STAGE 1 & STAGE 2) : Tailored Systemic Therapy For Endocrine Responsive Breast Cancer by IAN KROP AND ERIC WINER”
“Estrogen-receptor status and outcomes of modern chemotherapy for patients with node-positive breast cancer”
Thankyou for that.
I was thinking of posting a new thread asking the question:
“how do we know if tamoxifen is working”. My periods stoped after the second chemo back in march and i haven’t had a period since so assume it is but is an assumption acceptable ?
Sukes
Hi Sukes I have been onTamoxifen for 12 mnths in that time have had one horrendous period …but none of the other side effects that other ladies get …so I too ask the same question .
Hi Mazaroo,
Questions keep ging over in my head. Why do some women get arimadex others tamoxaifen, How do some women get blood tests to confirm they are menopausal or not. Why do some women get zoledex i think to stop periods.? I find it all so confusing and how do we know tomaxifen is doing what is supposed to do?
sukes
Arimidex (aromatase inhibitor) is given to women who are post menopausal. In some cases women who are pre-menopasual will be given zoladex to stop their ovaries from working and make them reversibly menopausal so they are able to take Arimidex.
Why would they want pre-menopausal women to take Arimidex and not Tamoxifen? Because in some studies AIs are getting lower recurrence rates than Tamoxifen (though not lower mortality rates). Also some women who are pre-menopausal may not be able to take Tamoxifen (problems with blood clots etc) so oncologists will enable them to take Arimidex by suspending their periods.
On the other hand AIs cause bone depletion and may be considered unsuitable for women with bone thinning or osteoporosis. I am post menopausal following the removal of my ovaries but am being taken off of Arimidex due to osteoporosis. Arimidex reduces bone density, Tamoxifen increases it.
So to answer your question, there are all sorts of reasons why people are prescribed one hormone therapy over another. Another major factor is the preference of the oncologist. Some believe AIs are a fabulous new wonder drug, others, like my onc, think it is just a lot of excellent marketing. (I don’t agree with him.)
It is very difficult to know if Tamoxifen is doing what it should although the side effects you are/aren’t experiencing can be an indicator.
It has been known for a while that women who experience stronger SEs have fewer incidences of recurrence than women who don’t get many SEs. The logic behind this is obvious - SEs are the manifestation of your body’s reaction to depleted oestrogen.
Recent research has revealed that women who have few SEs on Tamoxifen can increase the depletion of oestrogen in their system via their diet - it needs to be low in fat and very high in fibre, fruit and veg.
Hi molly,
thankyou for that u seem to be very knowledgable on this. I must admit i don’t really suffer many se from tamoxifen other than no periods which was induced by chemo. Initially when i finished chemo i had really bad joint pain but the joint pain has got better over time )i’ve been on tamoxifen for 4 months). The hot flushes have also calmed down. Why do u disagree with your onc and his opinion on Ai being a great marketing deploy?. I think i’m also going to ask for a blood test to confirm if i am pre or post menapausal?
Thanks for taking the time to respond to the above questions.
sukes
I disagree with his comments about AIs because I have done my own research and from what I can interpret I think it is a pretty substantial drug … and I think he is just a cynical old git who is very stuck in his ways. We have regular battles and when he fails to persaude me over something he resorts to comments like that!
He is a very big fan of Tamoxifen - oncs just have their preferences. He is obsessed with mortality figures and ignores any data on recurrences. As yet AIs do not show any increase in life expectancy compared to Tamoxifen and that is his main argument against them. My take on this is that the data is not expansive enough yet. I also have a simplistic view that mortality occurs when recurrence happens - so if recurrence can be stopped or delayed then surely death rates must drop and/or life expectancy increase.
Across the world oncologists in centres of excellence are using Arimidex very effectively for women with primaries and secondaries - and a friend of mine with liver mets is getting some excellent results on Arimidex.
I think it is very wise to get check your menopausal status Sukes - it is such a crucial element of this treatment and is such an easy blood test.
Best of luck.