private chemotherapy?

 i know from your profile you havent felt supported or listened to so far in your treatment, however i wanted to say  that our NHS is fabulous, dont let a few people who dont demonstrate its values make you think all the NHS is like that

I had chemo on the NHS ,    the nurses , health care assistants , doctors and the volunteers who brought around drinks   all of them were so caring and attentive

I am so grateful we have access to free treatment in the UK . Chemo isnt easy but as someone said on this forum  it is doable. I kept that line in my head all the way through.

Please give them ( the doctors and nurses) another chance to show you  the majority of staff working in the NHS are kind and motivated to do the right thing for us

Hi , I live in North London too, and have had a mastectomy, level 3 clearance and chemo at my local hospital, The Whittington. I initially chose UCH as I worked there as a student and know that it's good for certain things, but like many NHS hospitals is currently struggling with patient numbers. I'm glad that I switched as The Whittington is exceeding it's national targets for treatment times. The other main hospital in the trust is the Royal Free, where I know that the Diep operations are done, but I not been there for any care. Doctors frequently work between the different hospitals, and indeed my surgeon and oncologist also work at UCH (my surgeon also works one day a week privately as well). If you want to ask me about my experiences please feel free to 'friend' me and we can message.

I was diagnosed in April, and due to family issues was really desperate to have a mastectomy ASAP. The surgeon I was initially given was booked for two weeks so she called a colleague working at UCH that day who cleared his list the following week for me (they were benign operations). Once the results were back I was referred to my oncologist, who is very thorough, and I had a nuclear bone scan, chest CT and CT with contrast and an MRI scan within 3 weeks of surgery when a sentinel was positive. I had level 3 clearance a couple of weeks later, followed by 5 months of chemo. My oncologist was really supportive, and at my request swapped fortnightly paclitaxel for weekly. The nurses in the chemo suite were also very calm and supportive. I chatted to a radiologist who was in the chemo suite a few weeks ago, and she told me that numbers of women being diagnosed at the hospital have jumped in the last few months from 1-2 a week to about 5 a week, and the team are adding extra clinics to try and cope.

I'm guessing that they need to see the results of the CT scan to decide what is the best way to treat you. When the results are in they are usually discussed at team meeting (on a Monday at the Whittington, so on other days at the other trust hospitals) I was told that if my cancer was stage 4 I'd only have chemo straight away if it was the best option depending on where it was. I'm ER and PR 8/8 so Letrozole would have be given initially. Everyone is different, and oncologists have different strategies. Mine for example gave me 4 x EC and 12 x Paclitaxol (from 4 x 2-weekly) but I stopped after 7 due to the start of peripheral neuropathy. Other doctors only give 3 of each. Mine ordered 2 CT scans and a full body nuclear bone scan for staging when some will do an MRI (I hate MRI scans when it's the body, but they avoid the radiation from CT scans). Chemo is very well managed with breast cancer. EC is one of the toughest to do but is closely managed. I had a phone call from the hospital pharmacist a few days into each cycle who chatted to me then prescribed different medication if required. When I felt really unwell in the first few days (ironically probably from the steroids) I went to A&E. There is a monthly chemo thread on the main Breast Cancer forum, so maybe take a look at that. Remember that we tend to post about the negatives, as saying how well we feel is less interesting, and maybe disheartening for others. I felt fine for the second half of each cycle, and when I didn't feel able to have my 4th EC as I didn't feel well enough they delayed it a week even though my bloods were fine (well, passible!) I know that chemo isn't cheap as the NHS actual cost of the drugs is many thousands of pounds for a course. The Paclitaxel cost almost £500 a week for the drug alone, chosing one of the cheaper brands. That's about £6000 for one course of drugs before staffing, other drugs prior and after the chemo itself etc. If you are having chemo you'll probably have a PICC line or port fitted as well, and the PICC will need weekly dressing changes.

Could you try asking when the team might have the scan results? I'm guessing that the clinic is open today. It must be so stressful for you. I thought that I was going mad waiting on my staging scan results, and a few days seems like weeks! Unfortunately staff need to take a few days off too, so that might have slightly delayed your results at a time when you are so desperate to move forward:(Fingers crossed that you hear soon.

Take care, Margaret xxx

Thank you, ursula2.  It sounds like you had a really good experience with NHS.  I can only hope it will be like that for me.  It's good to hear a first-hand account that it can be better.

Hi Londonmumof2, I sent a friend request.  Would love to message.  Got the CT report today and it confirmed the metastasis in my spine and it also says I have metastasis in my liver.  The breast surgeon called me today and told me the oncologist refuses to see self-pay patients due to the cost and would be willing to see me as an NHS patient.  I told him my concerns, and he repeatedly stated my experience did not coincide with NHS standards and that I will receive good treatment going forward. He and the breast nurse were very accessible today and kept me updated throughout their efforts to get me in to see the oncologist next week.  The breast nurse especially has been very personable and kind.  They are starting to make me think this time may be different.

So it looks like I will see the same private oncologist that the private gp referred me to, but at his NHS clinic.  And so far they haven't acted like I'm a lost cause.  The oncologist I had in the US is still in touch and has asked for updates.  I texted her what they found during the CT and her response really brought my mood down (temporarily).  She reacted like I was doomed.  Not really what I wanted to hear.

I won't accept there's nothing they can do until I am told by every doctor I can find. I've seen several positive stories online about people who get metastasis in the liver and are still around years later. One thing the US oncologist did say is that I need a biopsy to confirm and if it's breast cancer it's treatable.  I asked her what if it's not, and she didn't answer...