New Lump In Right Breast After Left Mastectomy - Don't Know How To Cope

Public Archive
1

Hi everyone,

Bit of a downer, this one and need some hugs from you lovely people.

Had IDC in left breast dx’d 2/7/2007, op was 6/8/2007 and the MRI and ultrasound scans showed one grade 0 (pre-cancer) lump and 2 less than 2cm’s either grade 1 or grade 2’s - they varied with each meeting and each letter we had at the time. The same scans said my right breast was clear, and that there was nothing amiss in my brain either.

We had my brain done because I have the most ridiculously complicated endocrine problems, have to take hydrocortisone every day to prevent adrenal crisis (Addisonian crisis) and T3 because my body doesn’t convert thyroid hormone T4, which is what your thyroid gland makes, into T3, which is what the body uses as energy for everything. EVERYTHING. Having spent literally years fighting to get a confirmed NHS dx on these two issues, I finally did get it with my GP in Ramsey - when I lived in London before it was useless, I got a private dx but the NHS would have none of it. And guess what? One of THE biggest predisposing factors causing oestrogen +ve breast cancer is…lack of thryroid hormone!

But that’s by the by. Or possibly isn’t. Is too complicated to tell. But one of the worse symptoms of my whatever-the-underlying-thing-is (assuming it isn’t the cancer) is these awful migraines, with violent and continuous vomiting, which because of my adrenal status is v dangerous for me. They come in clusters, and started again last week, and Monday I was just semi conscious from time of waking up until 9pm. Doc had to come out and do an emergency hydro jab.

But I’m rambling - you can tell I need hugs!

The point of this post is that when they did the mastectomy, instead of the three small lumps they were expecting to find, they found “multiple” grade 0’s, and one FOUR and a HALF cm tumour, really close to the chest wall. They have no answer as to how something that big could have been missed on the MRI, the Gold Standard for breast testing - I’m only a 34A so it’s not an insignificant size! We then expressed concern about the other breast, which had previously had a cyst the year before, and I could feel other lumps in, and were promised further investigations, because how are we supposed to trust the results of a scan that was so very very wrong in what it showed in the other breast? Also, the surgeon was only able to get 1.1 MILLIMETRES of margin clearance, instead of what they like, which is 5-10mm, which is why they’re throwing everything at me now (Zoladex, E-CMF, rads, Tamoxifen, poss herceptin if we ever get the result back).

Anyway, on Saturday, I found a new, hard, painless, pea sized lump in the right one, and have spoken to my bcn about it - she wasn’t there when this MRI anomaly was given to us, and, unbelievably, me telling her yesterday is the first she’s heard about it, and she’s shocked.

I have felt all along that there was cancer in the right one as well, but with what I now know about the evil disability that is lymphoedema, and how b***** restricting it is (I normally work as a horse-whisperer) I just don’t think I can cope with the prospect of yet another bout of either sentinel node or level 2 node clearance, regardless of mastectomy or lumpectomy because of the increased lymphoedema issue. That would mean I don’t even have one “good” arm to use, and will be pretty useless at everything/anything, and it will mean a total end to my work with horses, not to mention never being able to continue with my British Horse Society exams - I’m at Stage 2, and I need to be at Stage 3 to progress with teaching, for example.

How does everyone else cope with this lymphoedema issue when they have bilateral mastectomies? Am I just being silly, or is it usual to feel utterly devastated, useless, hopeless and helpless at this point? I don’t know how much more of this I can take. I’ve already had to defer my third yr of my equine/drama degree because the Zoladex and chemo are making me so ill that I can’t go back to uni next week.

And as I’ve just started chemo (2nd session this Fri coming), what will they do if this new lump is cancer too? Will they have to stop the chemo in order to operate, or what? My understanding is that they can’t do chemo for nearly 6 weeks after surgery because it compromises healing, so what will happen to my existing treatment, and the fact that the surgeon is unsure he got all of it because of the poor margins, if they have to start over on the other side with a new tumour?

Some advice and shared stories would be welcome :slight_smile:
I’m just feeling so desperate.

Hugs and love to all of you,
N xxxxx

2

Hi,

I’m sorry that I can’t offer any advice but I am sure that others will. I was so sorry to read your story and wanted to give you a hug.

Thinking of you at this difficult time.

Margaret x

3

Thanks Margaret, I appreciate it xxx

4

Hi Angela,

Wow what a complicated set of symptoms/cancers you have. I think you can allow yourself the freedom to let yourself ‘ramble’ but I didn’t see is as rambling.

I can not offer you much advice but my understanding is that some women have chemo before surgery in order to shrink cancers so maybe whilst under going your treatment the new cancer will be at least held at bay.

5 days ago I had a mastectomy following the third recurrence of cancer in my left boob, I have got really fed up with the to and froing but remain positive. I have had 2 MRI’s and I must say I always have at the back of my mind, the results are only as good as the person who read the scans!

Sending lots of hugs and wishing you a real peace over the next few weeks.
Cheers
Carol

5

Thanks Carol. Some peace would be beautiful.

I know what you mean about the results and the readers of the slides - but the very very good radiologist saw them, then another radiologist, then my oncologist, and they’ve now in desperation sent them down to Benson at Addenbrookes in case he can see what they missed (Benson used to be the main breast surgeon at Hinchingbrooke before Addenbrookes pinched him). They’re clearly uncomfortable with all this, and are regarding it as unusual to say the least.

Am so sorry to hear of your recurrence - hopefully the mastectomy will have seen it off for good.
Have you read the Jane Plant book, Your Life In Your Hands?

Love and hugs,
Angel xxxx
aka Nicola
aka Nikki
call me what you want !

6

Hi Angel,
Sorry I misread your name. l had just been talking with my friend Angela so I think it was a case of lazy reading.

It sounds as if you are in good hands and they are on top of things regarding where to go next.

I read the book a year ago I think I might go back to refresh my thoughts.

Good Luck

Carol

7

Sorry Carol, I didn’t mean to point that up - I’m used to being called Angela on here and really couldn’t care what I’m called - just as long as I’m called!

Good hands??? A good bcn who hasn’t been kept up to speed with what’s happened by another not very good bcn, misread MRI’s and ultrasounds, the glibness with which the surgeon said “4 and a half centimetres” with not-very-good bcn staring boredly out of the window, the way I was told initially that I wouldn’t have to have any chemo, then having to have Zoladex, chemo, rads, tamoxifen and poss herceptin if the result ever turns up…it ain’t feeling like those hands are greatly safe right now!!!

Let me know what you thought about the book when you’ve had another look. It strikes me as quite compelling. I’ve started another thread on it under the Treatment For section.

Hugs and love,
N xxx

8

Hi there. I went for mammo and ultrasound in March on left breast, and told nothing there even though i could feel the lump, but a lump was found on right breast which I didn’t know about. Had lumpectomy ./ diagnosed as grade 3 , trip neg. but optimal clearance not possible. They decided to have another look at left breast lump and they decided it was cancerous after all. !! But this time oes. positive. This was only a month after my first op.
I decided to have a bi lateral. As I have no good arms, they fitted me with a Hickman line, for chemo, bloods taken etc.If you do have to have an op. make sure they dont puncture your arm with needles . and that they take blood pressure on your leg.REMEMBER IT IS YOUR ARM!!!. Don’t let any one tell you any different as they think it’s easier for them to take bloods as normal. lymphodeama isn’t for def. only a possibilty .The important thing is to try and take care and keep your arms covered when working
Regarding clearance I too was concerned , but a family friend is an oncologist away from my hospital and she told me
although preferable it is not a major issue
I hope this helps.a little
Good luck

very best wishes

Ruffy p

9

Thanks Ruffy, that’s reassuring to hear and I thank you for taking the time to tell me. My biggest problem with the lymphoedema thing is its very un-definiteness, the spectre of it hanging over me forever (bcn’s term) just seems if anything more cruel than the disease itself. The thing that gets me the most is that it can develop “longer than 10 years after the surgery”, that there is no point in time that they can say, hey, it looks as though you’re in the clear, unlike with the cancer when they kind of can after the magic 5 years. I feel it like a continuous black cloud, and it’s really got me down.

The doc that came out to do the emergency hydro jab and blood pressure tried to do it on my at risk arm, which given my semi-comatose state at the time was something I found alarming - luckily BF was on hand to put doc right, but I can see how easily something like that could happen, and I find that quite frightening. Have considered having it tatooed on my forehead! Or written in big red marker pen on my headboard! It isn’t like he didn’t know - he had a whole print-out about me, according to BF (I couldn’t see anything much at the time, but I do remember whimpering and wriggling out of docs grasp when he went to BP my arm. Same thing happened when I had to go to A&E with fluid after I came out of hosp from the op - everyone knew about the op and why I was there, and the young doctor still went for the left arm!! Being compos mentis (sp) at the time, I’m afraid I gave him a bit of a talking to! I don’t think he’ll make that mistake again in a hurry - I wasn’t rude or anything, but I did point out the possible consequences of what he’d been about to do! We’ve now arranged my bedroom so that access to my left side is seriously hampered by cunningly arranging furniture, and hopefully any future emergency visits when I may be less than capable of communicating will have to be conducted from the right side, so maybe that will help on that particular issue. All this having to second guess and protect yourself is so flipping tiring - if you can’t trust the professionals, who can you trust?

I honestly don’t know whether to go the - get on with life and physical activity as normal and hope I’m one of the lucky ones who never develop it, or go the safe route and be careful, which in theory should give more protection, but I hear of people who take every precaution and still get it. I had 17 nodes removed, I thought there were dozens in there, but according to one of the cancer care leaflets, an official one, it said there are only about 20, so I had a little freak out to my onc about it and he said there are more like 40 - so why is 20 in an official booklet on it? I get so confused by the different info that comes from seemingly sound sources. Another one is that yet another official booklet said that lymphoedema risk is around 25% with level 2 clearance, but my good bcn says it’s 5% - so who do we believe? Who’s got the accurate info and who’s giving us bad info, and how do we ever find out for sure? It’s probably a control thing on my part, heightened undoubtedly by feeling so out of control over having developed bc, but I really need to know the real facts, and I find it difficult when I keep getting conflicting info - the MRI vs the actuality of what they found being just one more example. And my hideous reaction to Zoladex and first chemo being others.

Is it like this for everyone? Or does everything normally run exactly as predicted?

Thanks for your reassurance though, I will cling to that :slight_smile:

Love and hugs,
Angel xx

10

Ruffy, how do you cope with no good arms as regards stuff like carrying shopping, driving, cleaning, day to day stuff? What do you do? What can you manage and what do you draw the line at?

A xx

11

Hi
I was dx 8 years ago left breast, triple neg, lumpectomy, nodes, chemo, rads. Dec 2006 dx again, right breast, DCIS or so i was told, op on 2nd Jan 07 (my birthday) needle marker was put in, went back to clinic a week later to be told tumour 8mm, no clearance so back again, another op, lumpectomy, nodes, back to clinic a week later to be told clear margin & referred for chemo. 2 days later find another lump same side, biopsy, cancer! I was told someone had made a mistake!! I was told def mastectomy & advised a bilateral. Panic set in, so i made a appointment to see my bcn to go through my notes and talk about my options, only when going through my notes did i find out they actually put the needle marker in next to the tumour they took out & not the DCIS, the xray clearly shows a tumour, to say i was angry was a understatement. If i had known i would have had the mastectomy first time around. In the end opted for the bilateral as i am only 37 & i finished my chemo end of July. I have also found a lump on my lower back & i have lower back pain, this maybe due to the chemo, but my onc told me to “see how you go & we will see you in six months”, so straight to the gp & i got a referrel for a bone scan (2 weeks). All i can say is you are not being silly, go with your instincts & get second opinions if you wish, but talk to your bcn & onc until you get all the answers you need.
Lymphoedema was never an issue, it is something that i may or may not get in the future, but i don’t dwell on it, i wear gloves when gardening etc. but that’s about it. I do not restrict myself in anything i do, a week on Saturday i am doing the Ben Nevis challenge for breast cancer care! & i am hoping to go back to uni next Sept after my reconstruction.
sorry this was so long
you take care & i hope this helps
Louise x

12

Hi Louise, congrats on your Ben Nevis challenge, and the very best of luck with it - let us know how it goes.

I think stories like these are all too common, about mistakes and omissions, and all we have are our wits and intelligence to protect us. Have they not suggested doing a biopsy on the back lump?

Thanks for saying I’m not being silly. It’s always difficult to know where you are when you’re in new and strange territory.

love and hugs,
Angel xxxxxxxxxxxxxxx

13

Angel,

Interested to hear about the thyroid connection. I was diagnosed with an over-active thyroid Feb 06. The standard treatment is to take drugs to block the body’s own thyroid hormone, then when natural production has stopped you take synthetic hormone. The whole process is quite protracted - took about six months to sort me out - so I was lacking thyroid hormone for a while last year. Then dx with BC Feb 07 - any connection?

I’m due to come off the drugs soon, I may then be cured of the thyroid problem or it may all recur - so I’m worried about what happens next.

14

Angel

You have been through it and deserve loads and loads of hugs. I can’t believe that they managed to miss the lump on the MRI, it beggars belief. I hope that they all pull their fingers out and get you sorted soon.

Take care and good luck

Debbie
x

15

Debbie, thanks so much :slight_smile:

Roadrunner - I would think that it would take many years of a lack of thyroid hormone to help cause the cancers, because it impacts on the way the body uses oestrogen. What normally happens with proper levels of TH is that oestrogen binds to Sex Hormone Binding Globulin, but without it, it does bind and therefore is “free” and able to cause damage in the body.

I would urge you though, when they start replacing your TH (with probably T4 but if you’re lucky you might get an enlightened doc who puts you on T3 and T4 together), you MUST INSIST that whatever the blood test results say, if you feel tired, are putting on weight, have poor concentration, mood swings, feel cold, that they allow you to increase your dose until you feel warm and normal. I realise all this is going to be very difficult if you have to extrapolate that lot from cnacer symptoms, but the easiest way to check that your thyroid levels are normal is to take your temperature every morning AS SOON AS YOU WAKE UP. The idea is to get as close to your bodys’ resting (ie sleeping, basal temeperature) as possible. In old money, 98.4 is normal (you’ll have to use an online converter to change it to the strange small numbers!) My morning temp is rarely above 95 or 96. On good days, and whilst I’m on my mega-dose of 80mcg of T3 (normal replacement dose would be 20mcg, but I think that my body just doesn’t pick it up correctly, maybe an enzyme or protein receptor deficiency, we don’t yet know) it reaches the dizzy heights of 97.5, which is still nearly a degree below norm.

I worked with Dr Peatfeld when his thyroid clinic was still running in 2000/2001, and we saw a number of patients who had had a drug called something like carbolozole (carby something, anyway!) or had had lumps of their thyroid gland removed. They were rarely supplemented correctly after their treatment, and were subsequently thrown into hypo-thyroid from being hyper-thyroid, hence they came to the clinic. Some even had thyroid irradiation to destroy bits of the gland and thereby reduce its hormone output. So do please monitor yourself and your thyroid levels in terms of how you are feeling to avoid becoming hypo.

On the plus side, I really can’t see that the short period they have made you deficient for (and I question their right or wisdom to do that!) will have any lasting consequences. I hope that helps !

Love and hugs,
N xx

16

sorry, that should have said does NOT bind to SHBG

N x

17

Angel,

Thanks for the info. I will monitor myself carefully in future.

xx

18

No probs. Let me know how you get on :slight_smile:

Love abnd hugs,
Angel x

19

Me again,

Saw onc today and asked him to take a look, and he’s referring me as soon as poss back to lovely radiology lady. I also asked him some more about lymphoedema, because I am so concerned about it and have all this conflicting info.

No answer as to why one of the official booklets says we have “around 20 axillary lymph nodes” when onc says more like 30 or 40 and that NEW ONES CAN GROW - !!! Hoorah!! And no answer as to why another official cancer book quotes the risk of lymphoedema after axillary clearance as 25% when onc says is 5%.

My head spins!

But he was very sure about another thing too - that the longer you go without incidence of lyphoedema, the lower your risk of developing it falls, so I do feel a bit happier about that.

AND (I do LOVE my onc) he is happy to repeat my brain MRI a bit further down the line, because of my increasing migraines, so again he’s doing something just that little bit more than he needs to, which I appreciate massively.

And he’s given me a cyclizine pump thingy to continuously deliver cyclizine anti-emetic to me, AND some Dex to take over the next days, AND som temazepam to knock me out at night when my legs and other pain won’t let me sleep.

AND I took Jane Plant’s book in to show him, and my John Lee, David Zava “What Your Doctor May Not Tell You About Breast Cancer”, and he’s written down both titles and authors and has said he will definitely look at them. What a star.

AND, had he been able to find it in the BNF (the drug book they can prescribe from) he would have scripted me some NATURAL progesterone. I won’t use synthetic progesterone, which is known as progestin, or progestagens (sp), and onc also confirmed my feeling about progesterone +ve tumours today when I asked him to clarify - I asked if they were natural progesterone +ve or progestin synthetic progesterone +ve, and he confirmed that it was progestin. So if any of you have been told you’re progestrone positive, according to my onc (and I agree) it’s the synthetic progestins that your tumours are +ve for and can be fed by, and not the natural progesterone, or natural phytoprogesterones.

Love and hugs,
Angel xxx

20

Angel

Glad your appt went well, it certainly sounds as if you’ve got a fab onc, and I hope that you feel relieved that he’s on top of it. Great news that you get another brain scan, you could really do without any other worries and I’ll have everything crossed that its nothing sinister and its something easily sorted.

I was speaking to my BCN yesterday and we were discussing lymphodema and she started that the odds of getting it are 1 in 5 so what’s that about 20%, I like your oncs estimate of 5%!

My tumour is ER- and PR+, I’ve been searching the net for more info on this, I am apparently going on tamoxifen for 2yrs and then something like arimidex after that, I haven’t gone through menopause yet, and this is all very confusing as I thought that tamoxifen was for ER positive, my poor brain just isn’t up to much lately and I have no idea about synthetic progestins, natural or phytoprogesterones.

More hugs heading your way.

Debbie
x