Grade 3 aggressive breast cancer with spread to auxiliary nodes

I always have a positive attitude...I have a spiritual page on Instagram where I guide many with just that and mindfulness...I love ure Dangling carrot Analogy...We all need goals and something to live for.. 

Waiting on last test..I am ER/PR NEGATIVE...Nurse says poss triple neg...I did the stats tool...NOT MUCH OF A GREATER PERCENTAGE of life expectancy with chemo...about 9 percent...I have always had a sense of 55 was my time ....So another 6 years...(May sound gloomy,but I am a Spirit guide and ive  known this feeling for alot of my life..) I want a quality to my life with no more suffering...I have many health problems...ME and Spondylitis and PTSD...just a few ...lol

Thanks for ure input...I am still on the fench with chemo and radiation...Looks like I maybe Triple negative ...waiting for one test to come back..ER/PR negative for sure

Thanx for ure reply

The thing that convinced me was turning the difference in the  two percentages (with and without chemo) into a fraction.  So I was looking at 10 years which is what oncologists do,  and chemo added 4% at the time. Not a lot,  but it was a choice of 6% chance of death with chemo,  or 9.5% without it (the benefit of letrozole and Zoledronic acid seemed to change when chemo was removed). That's 1/10.5 or 1/17 chance of death by BC in 10 years, and I'd rather try not to be the one in a group of 17!

If you are TN then the  only treatment is chemo and radiotherapy. I'm presuming that they want you to have the  radio due to the nodes and if it's a mastectomy the size of the  tumour?  I know that with TN you are most likely of recurrence in the first 5 years,  and you'll only know the  full picture after surgery, as nodes can show up as clear when they aren't,  and size, grade and LVI will then be confirmed.  I had a positive node and a small area of DCIS which was missed in multiple mammograms and ultrasounds,  but no LVI thankfully.

I dithered either way quite a bit,  and decided that I'd stop chemo when I felt the side effects were too much.  I had 4 EC (with a 1 week break before the fourth at my request as my blood were 'ok' but felt I needed an extra week,  and requested weekly Paclitaxel rather than the fortnightly ones normally given so I could keep an eye on things.  I cold capped,  took bone broth in the  first week of EC, used evonail to protect my nails,  cooled my hands and feet with the  Paclitaxel and stopped after 7 (out of 12, but ideally 9 Paclitaxel) when I started to get some peripheral neuropathy. I'm really sensitive to medication, have asthma, and have had issues with an irregular heartbeat in the past. I'm not 100% back to normal,  but the letrozole is actually more of a challenge for me!

If you are HER2+ then treatment for that will also add a decent percentage to your figures,  but is only given with chemo. 

It's an awful lot to take in,  you're at the most stressful point of the journey, and sound like you are working through your feelings and options carefully. Good luck,  and please let up know how the results go.  Xx

I've already had cancer...early stages of skin cancer ..2 surgeries on my leg.....Long time ago...I've been on the Rick Simpsons oil (look up "running from the cure" ) Cannabis/hemp..for ten years to keep the cancer at bay...I had a tiny break of 3 months without..as I had dodgy batches and don't know if that's why it's creeped in again...I will be on high doses of oil  after surgery and probably need it the rest of my life....I've managed to shrink my tumour on my boob before surgery myself  with castor oil packs and frankincense oil....I had my ovaries and tubes signed away in march in beginning Covid .... Complexed cysts... and endometriosis...The op was cancelled....A 4 month transvaginal ultrasound now shows less complex cysts and a reduction in size.. This was done also by castor oil packs....To beat the big C naturally is hard work and takes dedication...No tap water...No processed foods.... Alkaline diet...I've beat it before the natural way...But I want my boobs removed anyway due to cystic breast disease...and annual mammograms which cause radiation and cancer....We all have to respect each others choice,but I am not killing my already fragile body with chemo...and I don't fancy radiation either.....9th September I will get all results...Thankyou for ure input...much appreciated....x

That's fair enough.  You need to do what's right for you:) I didn't know how much you knew about thr different cancers,  as a lot of women (me included) have a lot to learn when first diagnosed. 

I took full spectrum high strength CBD oil from CBDistillery from diagnosis  to after my second surgery last  year, which is meant to help kill cancer cells and helped me stay a bit calmer.  You can't buy full spectrum oil anymore (just broad spectrum which isn't the same or isolate which IMO is rubbish!) Hormone positive cancers need to avoid THC at all costs as it can stimulate cancer rather than the opposite. 

My sister had ER+ breast cancer 23 years ago and had a mastectomy and chemo,  followed by a recurrence 6 years ago when she decided not to have treatment and died 2 years later as it spread into her lungs. She didn't try any alternatives though but was happy with her choice.  I'm currently working my way through hormone blockers to try and find one with livable side effects. I've given up on Letrozole after working through brands  and doses. It raised my blood pressure,  cholesterol,  caused retinal detachment and ulcers,  joint pain, dizziness,  stomach pains,  headache and weight gain so I stopped as it was happening even on half dose. If the others  aren't any  better then I'll probably just not take then, lose the extra weight and follow an even stricter diet. The  gain is 4.3% at 10 year's, and 7.2% at 15 year's,  though I hope there's better treatments before then!

Good luck with the surgery,  and please let us know how you get on! Xx

Hi 

I would mention to your BCN as flying so close to your surgery may put you at higher risk of blood clots - they may be able to ask your GP to prescribe you with something to help this ? And make sure you have an EHIC card , insurance is currently invalid to Spain due to the FO advice to only a travel for emergencies. You are covered for state treatment under the EHIC and for pre-existing conditions.

In terms of treatment , you have to decide what is best for you and there can be serious side effects with chemotherapy, plus it is not a guarantee, so you have to weigh  things up with your general health conditions.

hope all goes well

jo x

Hi Londonmumof2

I find your first paragraph where you convert your risk to a fraction to be more confusing than simply sticking to the % gain from taking chemo, and then converting that to an absolute number.  If I am interpreting your paragraph and figures correctly your gain from taking the chemo is an extra 3.5 persons in 100  surviving, or an extra 0.35 of a person in every 10 surviving -  at 10 years.

We have communicated before about the side effects of endocrine therapy and how it can detrimentally affect eyesight.  My wife has opted not to take endocrine therapy ie Tamoxifen specifically because of this, and the other risks like stroke and PE etc.  Her gains with the Tamoxifen were 1% for 5 years, 2% for 10 years, and 3% for 15 years.   The NHS PREDICT nomogram does not currently take radiotherapy or healthy lifestyle and BMI etc into account, so perhaps the outcome % can be improved upon.

Considering also that the risk of stroke is 1% for the general population and higher in maturer patients, she felt that this cancelled out any benefits in the 5+ year range.

It has been a difficult decision and one which she worries about fairly constantly.  Apart from the risk of death from stroke and PE etc there are the QOL issues which you are grappling with at the moment, and we empathise.  I understand that over 30% of patients cease taking endocrine therapy because of QOL issues.

I am going through this dilemma with my wife, and we would be interested to hear of experiences where others have made the decision to opt-out of endocrine therapy.

D

Sorry to hear about ure sister...I've heard so many stories about people having chemo for the big C to come back anyhow...And then cannot be treated with same treatment...See how my surgery goes..My right boob is swollen and feels like I've a fist inside...can't wait for it to be removed...My BC is very painful...But my castor oil packs help...And dead sea salt baths..