confused and anxious again x

[jackearls1000]

Morning everyone ...well I have had my lumpectomy and healing well ...yesterday I went back to meet surgeon and the news is ...in her words ...I'm now cancer free!!! great news ...lump gone and lymph nodes all clear ...so she said I wont see you now for another year for your first year of 5 mammograms to keep and eye on you ...fantastic ....but ....I'm now passing you onto oncology ...to book in radiotherapy ..and you might need chemo ...because I'm ER - and HE2 - I cant have a pill ...and the lump was a grade 3 ..so might need a sweep of chemo to ensure its not spread ....I'm gutted and confused ....anyone else in this situation???? My nurse said its my choice ...but not to rule it out ..and they can Taylor the chemo to suit me ...is this right ?? hope everyone is ok ..xxx

[Jennymary]

After my lumpectomies I was told the cancer was gone, onto oncology to discuss 18 weeks chemo which I ended up not having due to a trial they were running at the time which I signed up for and showed I didn't need chemo, so 3 weeks radiotherapy in January 2014, mammograms in 2014/15/16 all clear

[jackearls1000 in reply to Jennymary]

wow ....that's amazing ....so there is still hope I may not need chemo?? thankyou for a swift reply ...what was the trial? x

[Happyrache2 in reply to jackearls1000]

There is an oncotype test which you can have, which will give you a percentage of improved prognosis if you have chemo. I had it, and mine was literally none, so I didn't have chemo, just radio, which I didn't find too bad. x

[jackearls1000 in reply to Happyrache2]

Hi Happyrach2 ...I'm not sure if I qualify ....I'm her2 and er negative.. my lymph and margins are all clear but I'm grade 3 tumour ....x

[Happyrache2 in reply to jackearls1000]

Oh I see. I was HER+, so yes that's different. I found I was told good news, then bad, then good, then bad ... It's a bit of an up and down journey. Hopefully though you won't need chemo in the end. I find I have just had to take one day at a time. x

[Jennymary]

Hi Jack, when I arrived at oncology the consultant told my that a lot of people go through chemo but they don't actually need it, it's the Oncotype test, he drew it out like a family tree option 1 chemo, option 2 chemo, 3 no chemo, I signed up, my cancer was sent to London, when there it was picked out and sent to California, (at the time it was too expensive to do the test here) in California it was tested for a certain level, high number was chemo, mine was low so no chemo, reading posts from other ladies on this forum it looks like the test is now being offered to suitable patients, hope this helps (my chemo, or lack of, and radiotherapy were more preventative as opposed to destroying any residue cancer cells in my body) good luck x

[jackearls1000 in reply to Jennymary]

yes that's what they are saying to me ...preventative ....I spose I need to speak to the oncologist about this ...the surgeon did say she this wasn't her field and didn't know much about it ...so wasn't qualified to say ....but this is settling me down a bit ...thanks so much ...what grade were you ? and where you positive or negative ? x

[Jennymary]

I can't remember if I was positive or negative, the hospital where I had my surgery said nothing about the trial, just off to oncology which is based in a different hospital expecting to be told about 6 chemo cycles........pleased I can help in a small way x

[jackearls1000]

That's great ...its such a comfort to know ...I was told if it was chemo it would be 4 months ..so I guess that's a small amount ...I'm not sure ...but preventative and cancer free were all used in the conversation x

[Hidden in reply to jackearls1000]

Hi , if you are triple negative (which looks like you are) you won't be offered the oncotype dx test as that is for ER+ cancers only , and ER+ don't always react very well with chemo which is why there is the test - there are also hormone drugs to help stop a recurrence. Being triple negative there are no other drugs out there , plus this type of cancer often responds well to chemo , so you are likely to be offered it , but if you are unsure ask the oncologist what your scores are for recurrence with or without the chemo and that may give you a better view?

Jo x

[jackearls1000 in reply to Hidden]

Triple negative wasn't mentioned ? what is the third negative ? x

[Hidden in reply to jackearls1000]

Hi Jacky, there is ER, PR and HER2 which can all be positive or negative, PR+ is treated the same as ER+, so if you are just PR+ you will be offered the same treatment as if you are ER+. You can be all three and be triple positive, or a combination of them (I am ER+ and HER2+) or negative in all three.

Having chemo is not on anyone's list of things they want to have and when I was diagnosed last year at the biopsy stage (they could see from the ultrasound it was cancer) I was told it was small, treatable, would just have the lump out, radiotherapy etc. That's not what happened, and being HER2+ I had to have chemo to have Herceptin which is used to treat this kind of cancer. But I am at work typing this, exactly one year since diagnosis - I lost most of my hair which actually was liberating, it was previously long and dyed brown, it is now short crewcut and silver grey but I am really happy with it! I ended up with three failed lumpectomies and had a mastectomy with reconstruction in April. As my mum said yesterday, "It hasn't been that bad really has it and if we knew then how you would be today we would have been really happy" Not sure I quite agree with her, but I get her point! So just take heart that it will be doable, not always pleasant, and if you don't need the chemo after all it will be a bonus!

Jo x

[Sciathos in reply to Hidden]

Great to hear about this, why did the lumpectomy fail ?

[Hidden in reply to Sciathos]

Hi there

When they remove the lump there are guidelines on how much cancer free tissue there should be, called clear margins, to make sure there are no stray cells. In 20% of cases this doesn't happen and a further operation is needed (called a cavity chest shave , hideous name!) to achieve a clear margin- in my case they uncovered extensive DCIS which hadn't shown up on any scans , and they just couldn't guarantee they had removed it all which is why I went on to have a mastectomy. Until they actually go in and remove the cancerous lumps and test the sentinel nodes they don't really know what the full outcome will be but they seem very loath to say that x I always expect the unexpected now ! X

[lynnedpope66]

Hi, I had a mastectomy in January, I was Er+ and grade 3 with clear nodes. I had the oncotype test and my score came back at 24 with signs of vascular invasion. It was my decision whether to have chemo or not but felt even if it only gave me a slight increase of the chance of no reoccurrence then I had to do it really. I had 6 x fec and finished at the beginning of July. It was once every 3 weeks and manageable, I escaped with hardly any side effects. It is a very personal decision but for me I now feel I have done everything possible. Am now on tamoxifen and feeling well. Good luck! Let us know how you get on. Xx

[jackearls1000 in reply to lynnedpope66]

thankyou for your reply ...did you lose your hair ...the prospect of doing so is leaving me with anxiety...silly I know x

[lynnedpope66 in reply to jackearls1000]

I used the cold cap for all my sessions, it's cold but if u ask for paracetamol before it's ok and the first 10/15 mins are the worst then u get used to it. My hair did thin all over prob by about half but I still had some new growth during chemo. I have got a wig which I wear when I go out just because u can't wash your hair very much or blow dry it so it is a bit of a state but will hopefully recover quite quickly! Didn't lose my eyebrows or lashes although they thinned a bit too. I agree the thought of losing my hair was almost worse than having the chemo and I never thought I would wear a wig but it's fine and I don't think twice now! Xx

[jackearls1000]

wow ...my breast nurse husband said if I go and tell them what I want ...they can tailor the chemo to try and accommodate ...and help with the symptoms .... they were talking about a 4 month treatment ...so would that be roughly one a month? my hair is very thick and I only wash it once a week anyways .....but I do colour it ,,,so I spose I wont be able to do that ...or could I use a herbal dye??/....I'm really petrified at the prospect ...x

[lynnedpope66 in reply to jackearls1000]

Yes I think it would, I saw my oncologist just before my 2nd session and if I had had any bad side effects I think he would of either changed the treatment or altered my anti sickness tablets to suit. It is scary but once u have started u tick each one off. It soon goes by. Xx

[blessedmother]

I had radiation after a lumpectomy in 2002. Unfortunately the cancer returned and I had a mastectomy in 2011 followed by chemo. I am cancer free. The best idea I can offer is to make sure you are confident in your oncologist. I was blessed to have an amazing one who is very competent and very funny! Odd to say but his sense of humor has been a joy through my journey. But most of all I trust him and his guidance. Yes hair falls out! Wigs are great now. I got a beautiful one free. There are many groups that provide them. Hair grows back! It is a journey and I hope yours is filled with hope, much support from.those who.love you and a complete restoration of your good health.

[Hidden]

Hi, I had mastectomy and partial lymph node clearance in June, when the test results came back from the lab, no tumour was found in my lymph nodes as previously thought, but one extra tumour was found in breast tissue, so they assumed that was what they thought was a lymph node cancer. The largest was 10mm. The grade was 2. HER2 negative, because I was borderline, I was offered the oncotype test to decide if I needed chemo, it came back with a result of 5, so was not offered chemo. I am now on a course of tamoxifen for 5 years, which is fine, no side effects so far, aside from sweats. just worried stupidly about putting on weight as before diagnosis had lost 2 stone with weight watchers, sounds ridiculous I know, but this whole thing has been a whirlwind, and I don't think I've processed it quite yet. Hopefully that is my story over, I've been lucky, (touch wood) and I just want to wish you and your journeys, all come to a happy conclusion soon x