Hello Everybody. I’ve been following these forums since I’ve been diagnosed, but this is the first post I’ve made, so here goes…….
I had grade 2 invasive lobular cancer in my left breast (lots of it) and had a MX. I’ve just found out that my nodes were clear. Phew! I will be having radiotherapy and hormone treatment but my big dilemma now is whether to have chemo. My surgeon said not to rule it out because I hopefully have a long time to survive without a recurrence (I’m 47), it was invasive and it was in many areas of the breast.
Now, I don’t have a problem with all the short term side effects (well, I do but you know what I mean) but I’m concerned about some of the possible long term side effects. In particular osteoporosis and permanent fatigue. My mother has fibromyalgia, which can be triggered by a stressful event. Mind you if being told you have breast cancer and having a mastectomy within 10 days doesn’t do it I don’t know what would!
There must be lots of you who’ve had to make this decision. I’m seeing an oncologist soon and I’d like to be a little bit prepared. So I’d love to hear from anybody who can tell my what conclusion they came to and if they think they made the right decision.
Hi Dawnrise
My situation is very similar to yours.I also have grade 2 lobular (3 foci biggest5cm)no nodes involved thank God, rt mx within two weeks of diagnosis.My surgeon and his team said chemo and rads were required ‘to be on the safe side’ so I went to Oncologist last week fully prepared for a date to start treatment .Had even cut my hair short to be prepared.He told me because the margins were good ,he didn’t think it necessary to have chemo or rads!!!
I couldn’t feel ecstatic because my surgeon and his team had been so good and this was one man on his own so I’ve told them to speak together and I’ll see my surgeon on Monday for another fill for my expander and hopefully a decision on the way forward.The oncologist is from a different Health Authority so not the usual one my surgeon discusses cases with .
Somehow I had come to terms with the need for the extra treatment which made me feel that there would be less risk for the future.I’ve even asked GP for a Dexa bone scan re the osteoporosis and started taking vit d etc to reduce risk.I am 14 years older than you so o/porosis is a real threat.
I’ll let you know what I’m told on Monday
Carole
Hi Dawn… It’s not usually your breast surgeon but your oncologist who weighs up whether they think it’s beneficial or not… There are some recurrence assessment tools like adjuvant online where the onc can input all the details of your specific pathology and can give you a rough indication of benefit from Chemo.
Try and arrange to see your onc so you can discuss it fully if they don’t think it’s necessary they won’t offer it as obviously the side effects and long term complications from Chemo can be pretty major.
Hi Dawn and Lulu
I didn’t mean to imply that I believed the surgeon over the oncologist(if thats what I did)It’s just that my surgeon has a review team which includes an Oncologist and I know he discusses possibilities with all of them .The oncologist at my appt only had my pathology notes and no review team but he did promise to discuss it with the surgeon.
Whats to be will be .I’ll know soon enough
Carole
Yeah we have MDT meetings and most decisions are made by the team but some surgeons do have their own views which are not that of the consensus of the MDT… Or that particular surgeon may not have been at the MDT the day your case was being discussed and I think in some units they don’t decide on treatment at an MDT and leave it up to each member of the team to make their on recommendations… Seems to vary up and down the country.
I’m surprised the Oncologist said no rads. My surgeon said I would have that to get rid of any cells he might have left behind during surgery in my chest. I didn’t have reconstruction though. I think I had 4/5 foci also up to 5cm. I suppose it also depends where they actually were. I don’t know yet what the margins were like. I was so thrilled to hear about my nodes being clear I didn’t ask. I see my Oncologist on 6th Dec.
Do you know how long you would have to wait for a bone scan?
As a side issue, what have you been told about follow ups? Mine didn’t show on mammogram or ultrasound. Did yours? I had to have an MRI to see it.
You sound well organised and very capable of making sure you get the right treatment for you. So far I’ve been totally confident in everybody I’ve dealt with and I’ve looked up my Oncologist and his qualifications and experience are impressive. It must be difficult to have to question what your Oncologist says but I’m sure they will realise how important this is to you.
Hi Dawn
I asked for a different Oncologist because I wanted treatment nearer to my family if I felt unwell,so was referred to different Health Authority for chemo.The appt was a bit chaotic.I was seen out of order to appointments ,then Oncologist (who has a very good rep in Merseyside)didn’t have my notes so had to wait for a fax.I was amazed he made the decision so quickly just on the histology.Initially he said he didn’t think I needed rads but was trying to speak to surgeon who he couldn’t reach.I was delighted he said no rads but from something else he said,I questioned him and said 'you mean no chemo either? and he said no!!My partner was with me and we just looked at each other to check we’d both heard the same thing.He’s made another appt for 7thDec and said he’d speak to my surgeon first.He did say I’d need the hormone blocking tablets for five years but I was gobsmacked but am not dwelling on it til I speak to my surgeon.If they are at odds ,I may ask for another opinion.My BC nurse said I’m in a grey area of treatment so to see what they say.They’re the professionals and they know their jobs.Like you I was so thrilled about the node results when the surgeon said to be on the safe side I thought why give me good news then tell me chemo was likely anyway.I’ve asked my GP to arrange the dexa bone scan and have to phone hospital next tuesday for appt.I’ll let you know how long.I had two mammograms,ultrasound and MRI.It was difficult to see (lobulars can be)initially thought 1mm and lumpectomy but Radiologist thought from ultrasound there was something else,hence MRI.
Carole
Radiotherapy following mastectomy is a fairly new concept as previously you would normally either have a lumpectomy and radiotherapy or a mastectomy… The guideline on which mastectomy patients benefit from radiation is still not clear cut however in the area I work I think it’s generally offered if a tumour is over 5cm but Chemo is not routinely offered for grade 2 node neg patients but they do have to look at each case individually so things like age and tumour type as well as grade stage and hormone sensitivity all give them a better picture.
Hi Dawnrise, my dx was ILC also, with a 3cm&4cm grade2 foci and grade 3 DCIS in all areas in the rest of my right breast, my nodes were clear, the ILC showed only on US. I had mx with immediate recon, 3fec&3tax chemo, no rads. My dx was in jan2010 aged 45 and I am now on tamoxifen. You could use the Predict or Cancer Math tools to work out therapy benefits for your situation, (only look if you want to know your stats though)! I wasn’t given the choice of chemo or not. Good Luck with the rest of your treatment. X
Hi Dawnrise, best of luck with everything. Remember, everyone has a choice on whether to go ahead with any treatment. A lot depends on your attitude to risk. Personally I’d take anything offered by the oncologists if it gave me a chance of not experiencing a recurrence. BTW I haven’t heard of a link between chemo and osteoporosis - is this something that’s been highlighted to you by your oncologist? However, I am aware of a proven link between aromatase inhibitors and bone thinning which you may like to consider. Also proven link between aromatase inhibitors and significant fatigue.
Tina46 - I had a quick look at a website with some kind of predicting tool but it advised not to do it without professional help. I expect the oncologist will use something like that, but anyway I don’t think I have all the information I need to do it. And I’m not sure I’m ready to know the stats yet?!
PuffyWhiteClouds - I’ve read in lots of places about the risk of osteoporosis with chemo, but maybe it’s more for postmenopausal women. But I’ve never heard of aromatase inhibitors. I just read a bit about them though, so that’s something new I know!
I think I’m just going to have to be patient and see the Oncologist and get the full picture of my results and see what he recommends for me and take it from there.
Thanks everybody so far and good luck with everything.
Hi there, Good luck with whatever you decide. I will try not to be dramatic or scare you but I feel very strongly about having chemo and belt and braces if you can get them )
At 36 I found a lump, small, clear margins, lumpectomy and aux clearance. I was low grade everything, so good prognosis for non reoccurance. I had 20 rads too but no chemo, which I was pleased about at the time. Did 5 years on Tamoxifen, coped well and was discharged.
My oncologist now said she wouldn’t have done any different now, presented with the same case.
Unfortunately in my 9th clear year I now have Liver and bone mets, not sure why, looking back is pointless for me as it still seems it was the correct call for that time.
I just suggest you look at it very carefully with your oncologist as I just had in my mind ‘phew’ I don’t have to do chemo, not knowing what was to come.
Take care and do whats right for you
Clare xxx
Potmaid
thanks for your comments .I am so sorry for your news .Your sentiments are how I feel .I think I’d be continually waiting for the other shoe to drop if I didn’t do everything possible to try and make sure it was gone.I’ll obviously take the advice of the experts but I’m hoping they’ll also listen to me and my fears
Carole
I don’t want to scare you. but my friend has just died. She refused any treatment other than surgery. Basically she was too scared to have chemo.
I had a worse dx over 3 years ago and tried to convince my friend that, although it’s not pleasant, it’s OK. She wouldn’t listen. 18 months after her dx, she died. It’s so sad. I’m here enjoying life and looking forward to a Caribbean cruise in the New Year… she’s not here.
Take whatever is offered. Hit the big ‘C’ with a sledgehammer, and then get on with your life.
Unfortunately you can have a small tumour with no nodes and all the treatment available and still the cancer comes back and you can have 20 positive nodes and a large tumour and after treatment yo live a happy healthy life… They just cannot predict who it will come back and who it won’t… Treatment helps to give you the best outcomes but sadly not everybody will make it.
Good luck with your appt Dawn
Tina I hadnt come across the predict tool before so thanks for mentioning it… It’s adjuvant I use mostly as that’s what is used here but can’t get it on my iPad so it’s good to have another one to look at.
Which do you think is most accurate, lulu? Predict gives me a much more favourable outcome! Part of this is down to the fact that it includes the benefit of herceptin, but also adjuvant calculates an additional 50% mortality if you are under 35 whereas Predict gives a similar outcome regardless of age. Do your stats come out as similar - or is the Predict tool much more favourable for you?
I agree with maltomlin take whatever they offer you and chuck whatever you can find at this s**t, I was dx with a double whammy both primary and secondarys back in March this year I have taken everything the docs prescribe and look at it as though we are lucky that we have all these treatment options available to us, I also use unconventional methods as well basically changing diet, exercise, supps, complementary medicine etc. I personally believe in treating the whole person. I was chatting to a lady when I was in hospital recovering from my mx, she had had the same as me back over 14 years ago she told me a story about her best friend who was a nun and refused all the conventional treatments whilst she herself just took everything they threw at her, the nun died and the other lady is here to tell her story.
Hope this helps and best wishes
Love and light
sarahlousie xxx
mine is pretty difficult to work out as I have had two tumours and a recurrence… I input them all individually as if each were the primary diagnosis… My original tumour is the one with the best prognosis… Think it was 95% on both adjuvant and predict… On adjuvant my second was around 85% and recurrence about 75%… On predict second tumour is just under 90% and recurrence is just under 80%… so it’s slightly better prognosis than adjuvant…
But in reality even if it’s a 1 in 1000 chance and you are that 1 it’s still 100% of you! My recurrence was rare and they said when they first saw the changes on MRI it’s unlikely to be a recurrence cos it’s so rare but on further investigation it was and I am that 1 in 1000… Somebody has to be it.
Not meaning to worry you just that statistics are a guideline only.
Hi Folks
I’ve just been given a little more information from BCN that helps me understand why Oncologist and surgeon were coming from different directions.Surgeon looking at biggest foci as 5cms ,whilst pathology report that went to Onc.said that there was a small gap between a 2cm and a 3cm (3mm gap) so ones thinking of it a one foci the other as two.size of foci determines whether chemo or not.3mm gap is a bit close for me to call but they are the experts.My BCN has a copy of the onc’s letter and said it is on this afternoons review meetings agenda so she will ring me afterwards.this is probably as clear as mud to some of you but others will understand.
I’ll know more later today
Regards to all
Carole if it’s any help clear margins are usually either 1mm or 2mm depending on where you are treated… At my unit it’s 1mm so they would be treated as multiple focal at 30mm… Hopefully at the review clinic they will be able to come to some consensus to help inform your decision.