Misdiagnosis by GP in August 2015 and now here I am ...

Hi All,  I’m not familiar with Forums so have come in on the Horome Therapy link as I understand that will be a planned step for me.  The story so far:

 

I am 52 years old and have been in excellent health all my life.  My last trip to hospital was when my daughter was born 27 years ago.  I left the hospital the following day having had no gas and air, no stitches, nothing.  I’m rarely ill.  In December 2011 I had my first Mammogram which was an excrutiatingly painful experience and I have reservations over its possible instigation of certain breast problems.

 

I visited my GP in August this year when I noticed a shaded lump at the top of the right breast.  I was alarmed as it appeared to have a dimple on it and I knew what that meant by way of press articles on health.

 

My GP (who I’d not met before and have lived in this area for 15 years) prodded the lump and said:  ‘‘Mmm - I don’t know what that is but it is outside the breast quarterings and doesn’t seem significant.  I will have you referred but it is probably only a lipoma.’’

 

On the 20 October I attend the Orthopaedic Department at the local hospital only to be told by a puzzled doctor, he didn’t know why I was there as I should be in the Primrose Breast Clinic.  He immediately reached for the phone and I was seen by the doctor in Primrose three days later, who carried out a scan and a biopsy, to advise me it was a tumour - hopefully at Stage 1 but possibly Stage 2.  I then was taken in to chat with the Breast Nurse who said: ‘Ýou will have a Lumpectomy followed by Radiotherapy and that will be that. All very straightforward.’’

 

I attend the hospital on 23 November for the Lumpectomy following all the radioactive dye injection process.  I came around to find a very neat incision but no Axillary node clearance.  I was pretty happy.

 

At the results ‘horoscope’ reading with the Breast Surgeon I am then told a tiny amount of cancer cells were found in the Sentinel Node so I go back in again for the Axillary Node operation on 4 January.  I am frankly dreading a second operation.  I was very sick after the general anaestetic and collapsed on the kitchen floor at home 48 hours after the operation.  Not a condition I’m used to.  However, it seems there is little choice.

 

Some good news (apparently) and I hope some control over my treatment choices for the future.  I have tested positive for the Hormone Receptors so am able to take a range of treatments.  My appointment to discuss those options has not yet arrived.  That said, at the ‘horoscope’ reading with the Breast Surgeon she mentioned the ‘‘Chemo’’ word and having seen work colleagues and neighbours pass away in a terrible state after having the Chemo ‘‘treatment’’ I’ve always sworn I would not put myself - or my loved ones through that emotional torture.  I also work full time and am the breadwinner so cannot put myself through some eight months of vomiting.

 

So it seems the ‘‘straightfoward’’ radiotherapy following the Lumpectomy is now on hold until the Axillary clearance is out the way and all has healed.  In the meantime I am trying to find out more about various Hormone therapies - which according to the Surgeon, I will be offered. 

 

Apologies if this trail of information is in the wrong thread/area.  I assume the Moderators may be able to put it where it should be?

 

Misa

 

 

Hi Misa, so sorry to hear your story.

I am similar in that I was lucky to be in excellent health before all this…it’s a weird one as early breast cancer doesn’t make you ill but the various treatments do! BUT all that is only temporary don’t forget, whereas being cancer free can be forever (and is for most early breast cancers).

I’m a bit ahead of you - had my lumpectomy and node sampling in Aug, started chemo end Sept and finished 2 Dec (yay!), have 4 weeks of rads in Jan, and also starting Tamoxifen in Jan. I’ll be on Tamoxifen for 10 years.

The absolute hardest thing about all of this for many of us is patience/‘submitting’ yourself to the process. We’re just not used to not being completely in control! But if you can manage to change your mindset a bit it does help…though obviously there will still be times you need to push for this or that (whether answers or appointments) so I don’t mean becoming completely passive! Just a bit more Zen?!

I was quite fainty after the anaesthetic too, but try not to dread your next op. Just be prepared for that and try to take is easy for a few days until it passes. Read up on other parts of this site about how best to manage after ANC to give yourself the best outcomes (e.g avoiding lymphodema etc).

Try to take things one step at a time and not worry too much about the other phases of treatment until they’re upon you ( easy to say, hard to do I know!)

As to chemo - I’ve just finished. I only had 4 cycles (so 12 weeks) and the most common seems to be 6. (18 weeks). You don’t feel ill the whole time, and vomiting is rare…the docs are very focused on managing side effects so if you have voniting after the first one (as I did) they will give you stronger anti-sickness next time, and they work. Many people aren’t sick, many work through their chemo (maybe a few days off each cycle) and all of it is temporary and a short period relative to the rest of your life!! Some people do decline chemo, and obviously that’s a perfectly valid choice, but just want to make sure you base any decisions on good information about what it’s actually like (for early breast cancer, rather than the poor folks you’ve known who presumably had something more advanced, if they passed away while having chemo?)

Anyway, very long post…sorry! Take a look at some of the other threads (surgery for info on node clearance, chemo monthly threads, radiotherapy) to gauge the range of experiences.

Breast cancer is very curable, and the treatment journey can be tough but you will get through it and once out the other side, you’ll have the rest of your life to enjoy cancer-free!!

Good luck X

Hi - yes I think you just have to follow your instincts on these things don’t you?  Mine was to take everything on offer, so that if it did come back at least I would know I’d done everything I could.  And like I say, I haven’t actually found the chemo that bad…perhaps because I was pretty fit and healthy to start with, or perhaps just luck, like much of this whole thing.  Sounds like you feel happy with your choice which is the important thing.

 

But that’s worrying about the GP isn’t it?  There is a NICE guideline that should have you seen by a specialist breast clinic within 2 weeks of referral if 30 and over with an unexplained beast lump.  Might be worth a letter to your health authority/trust if you think there’s a pattern with that GP (and maybe change your GP?!)

 

And Tamoxifen…yes I’ve also heard some horror stories, but I’m hoping there might also be a silent majority who don’t find it too bad?!  My oncologist did say I need to give it at least 3 months for your body to adjust before being too concerned about side effects…I’ve already got my prescription and plan to start in Jan so we’ll have to see how that goes! X