SURGEON SAYS ONE THING, THE ONCOLOGIST THE OTHER!!!!

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hi everybody, hope your all doing as well as you possibly can, i recently had a blue dye guided axillary sampling done, followed two weeks later by a masectomy and immediate back flap reconstruction, luckily the lymphs were clear, but it was a grade 3 aggressive cancer, my consultant told me i would need chemo, but when i saw the oncologist he told me i was just going on tomoxifen and that was that, all very confusing, also, i asked the oncologist if i could have my ovaries removed, as all the women in my family have not gone through the change of life until they hit their mid fifties and above, so i am now concerned that i will go through a pretend menapause followed by the real thing in years to come, the oncologist refused to even consider taking my ovaries, i am 44 years old, anyone else been through simillar?

hugs and love

alison

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Hi Alison

It’s the Onc’s call on whether you need chemo or not, the surgeon’s speciality is really just that…the surgery. Did the Onc not give you any clear percentage gains of benefit for you of chemo or tamoxifen?

Fuschia
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hi Fuschia, no he didn’t, just told me i was going on tamoxifen and that was that, unfortunatley i had only had my third op the week before i saw him, so felt very vulnerable, and probabley didn’t listen too well, but i do have real concerns with how things will pan out when the tamoxifen stops, i haven’t had a full nights sleep since starting it, and thats only nearly two weeks ago, also, i have gone straight into hot flushes and night sweats, i don’t even feel that my body is getting the time and the sleep it needs to heal properly after all the surgery i have had in the last six weeks.

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Alison

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If the percentage benefit of chemo for you was small, then the Onc wouldn’t necessarily offer it to you…however, considering your age and the fact it was grade 3, I am surprised that he didn’t at least mention it to you. Generally, as a rule of thumb, I think they offer chemo to anyone with a 5% or greater chance of benefit…dependent on lots of things, and whether the patient wants the ‘belt and braces’ approach, as well. (In the US, however, I believe they will give chemo to patients with even a 1% chance of benefit, but it is a totally different healthcare system and approach over there).

Because you are pre-men as well, then tamoxifen is really your only option - unless they decide to switch off your ovaries and then you can change to arimidex. You’ll have tamoxifen for at least five years, unless you go into the menopause before then.

TBH it sounds like you need to go back to this Onc and discuss all this again. Perhaps ring your bcn and say you were too muddle after the ops you had had, and as you say vulnerable when you saw the Onc.

BTW…how big was your tumour, I am presuming it was on the larger side as you had a mastectomy? Or was it because of it’s position?

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Hi Fuschia, it was 3cm in size and was right between my sternum and nipple, so mastectomy was the only real option, i have spoken to my BC nurse and am seeing this oncologist on Thursday this week, i saw my consultant again last week to have some stitches out, and he said that chemo was a choice i should have been given, and he mentioned again about it being a grade 3 and being very aggressive, this has all been very confusing for me, i have to say, i was not impressed with the oncologists manner, i found him very condescending towards me, or that could just be me not feeling as assertive and confident as i was pre-cancer days. i know now that since starting tamoxifen that chemo is now out of the question as they don’t work together but the thought of two menapauses one after the other does not sound good to me, as i really do not think that i will go through the real one for many years to come.

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Hi Alison

Have had the opposite problem to you! Told to definately go for chemo… only to be after 1st session that the benefit is marginal, and as I felt unwell I should reconsider - however, the oncologist did say to me that if my tumour had been grade 3 like yours then he would have been pushing me through the door to have chemo, (but I’m only grade 2 with 1 node involved). I do think you are right to be concerned. My sister was diagnosed last year and we both found our surgeons to be great and oncologists condescending - we have been treated in entirely different areas! Is there someone else you can get an opinion from? This is not a trivial matter - failing being able to talk to another oncologist could you ask for statistics (prinited) so that they can back up what treatment they have recommended for you. Good luck with your oncologist Thursday. Let us know how you get on. Sunny xxx

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Hi Sunny, i even asked my BC nurse if i was being paranoid, because believe me, thats how i was starting to feel and as she was away when they had the meeting about my treatment (not with me there!) she was not too sure, but she did remember my surgeon saying that i would be having chemo, so lets hope i get some answers, i don’t want chemo, but i do want my ovaries removed if that will give me a better future.

Alison xxxxxxx

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Hi Alison

Chemo isn’t out of the question at all. You can still have it, ideally it should start within four months of definitive surgery, I believe. You just can’t take tamoxifen whilst you are having chemo, it doesn’t matter if you have already started it, you simply don’t take tamoxifen whilst on chemo, and resume it afterwards. Sometimes ladies have a couple of weeks tamoxifen after surgery before they see the Onc, and then it is withheld whilst they are on chemo.

As it was 3cm, G3, am very surprised that you weren’t offered chemo, I must admit. Especially because of your youngish age. You are also right to ask about stopping your ovaries, it isn’t a trivial question - however, they can be stopped medically, they don’t have to be removed surgically. I wouldn’t worry too much about two menopauses btw.

I think you should ask for a second opinion, I really do. Don’t worry about your Oncologist’s feelings, he has to agree to it - these are very important decisions about your treatment, and future health, at stake here. Don’t let him bamboozle you. Ask what is the percentage benefit of you having chemo.

Fuschia
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Hi Fuschia, i vaguely remember him saying that only one women out of every thirty (women simillar to me, and this is what his computer told him) would benefit from chemo, i repeated this to my surgeon who said that he was right, but i could also be the one that benefitted, even my hubby asked the onc about what if i was the one, and he said to my hubby that i would know if i had got another cancer back, after that i just didn’t take in anymore, was in a bit of a state of shock.

Alison xxxxx

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So it sounds like he is saying you have a 3.5% benefit or something. Ask to see the figures, he should be able to do a printout of that computer programme that he is using. And I would still ask for a 2nd opinion, I don’t think you have anything to lose at all from one.

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i don’t think so either, just don’t like the mixed messages, and really, at my age i don’t need my ovaries, so why do they want me to keep them?

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Well, there are advantages of not going menopausal at too early an age - to do with osteoporosis etc. I hope your Onc is able to explain themselves more clearly this time…btw was it the Consultant Onc you saw or a Registrar?

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not sure, just know he’s an onc from Christies, i can understand what you say, but what advantages are there to going say five years, then my periods starting again? for cancer i mean

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Well Christies is a good hospital, by reputation certainly. I’m no expert on Tamoxifen, but isn’t there a possibility that it will tip you into the menopause anyway?

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after talking to my bc nurse, apparently it only gives the effect of the menopause, but at least she is all for this meeting and got it sorted very quickly for me, thats what i meant about not wanting the menopause twice

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I think tamoxifen can bring on the menopause earlier though, but I’m not sure. Don’t quote me on it!!

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have you looked at the Q&A on the cancerbackup site? i have found that a bit of an eye opener

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Hi Alison.,
just thought I would share my thoughts and tuppence worth in here. I had a grade and stage 2. 2cm invasive tumour - had lumpectomy and sample node removal. 3/8 nodes positive, so went back for total axillary removal. Another one positive,so I was strongly advised to have FEC chemo, which I did. Apparently my hospital in Plymouth, a breast care centre of excellence, advises all patients with tumours over 1 cm to have chemo, but I am aware /Oncs and hospitals differ. I would have thought a 3 cm tumour, even without lymph node involvement, would suggest chemo, and radiotherapy, but I am no doctor.

It seems your Onc is at Christie’s in Manchester, which besides the Royal Marsden, is one of the best hospitals for bc treatment in England, as they only deal with various cancers. Gosh, I wish I had been treated there, as they are in the forefront of new meds etc. My nephew worked as a cancer research scientist there for some 5 years, at the Paterson Institute, and his supervisor, Dr. Bob Hoskins, is often quoted in newspaper articles on bc.

I had a big problem with the Onc that my surgeon referred me to - won’t go into the nitty gritties as it is boring for people here who know me, but I just asked the receptionist in the Oncology Suite if I could please see another Oncologist - I didn’t care who, anyone other than him. There were no questions asked, no fuss, and within 15 mins prior to my first chemo treatment I saw a lovely young female GP who worked one morning a week in the Oncology Dept. Did I get lucky or not?

If you are not happy with your current Oncologist, I would respectfully ask your bc nurse if you can be referred to another one. You may discover, as I did, that I was extremely fortunate in finding a very compassionate doctor, who had to try and treat my Crohn’s and breast cancer concurrently. She was brilliant.
Chemo is not a therapy to undergo lightly, in view of the side effects, and you have every right to be treated by a doctor that you can get along with. This is your life - not their’s!!

The original Onc said I had a 4% better chance of surviving bc with chemo, along with radiation, some 5% and hormone therapy, which I think added another 3% (can’t remember the actual numbers now, as it was 4 years ago). I didn’t really understand, or indeed even care about the stats, just wanted to do whatever they advised. I figured they are the experts, not me. And - I am thankfully still here 4 years later and doing well with bc - although my Crohn’s is another kettle of fish.

I hope you can get to see another Oncologist - the bc surgeons don’t deal with chemo or radiotherapy and just refer you along to an Onc. Sometimes, as personalities, we just don’t “jell” with whomever we are referred to - but you have to make the decision to ask for another Oncologist. I don’t think you will have a problem if my experience was anything to go by.

Wish you the very best.
Liz.

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Hi Liz thank you for that, my onc is a dr from Christies but i have my treatment and everything else at Maccelesfield General, who are affilliated to Christies, so yes, i’m very lucky in that respect, but i do live in an area where i get the choice of 3 counties, please tell me about your experience with your onc, its so good to know that its not just me

love

Alison

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Hi Alison

I was treated at Christies by a fantastic onc - what is yours called.? I had a 1.4 tumour with no nodes involved and grade 3 but as I was only 42 he strongly advised me to have chemo as it took my survival up form 88% to 98% which is a huge 10% diffference.

Definitely ask for a second opinion and tell them to put your details into Adjuvant on line and give you the data - this is what my onc did for me.

Good luck

Alise