3 weeks post surgery, told I need chemo but wait of 8 weeks before appointment with oncologist…what to do??

After 4 months of surgeries I had a mastectomy. 5 weeks later I was told it was 137.7 mms (who knew?) with a clear margin. It was 3 weeks before I saw an oncologist and 6 weeks before chaemo started, totalling 14 weeks. It’s not good and i got very stressed towards the end of the wait. I asked the oncologist after I d started what the implications were. He said it was a long time to be living with the chance of metastisis but went over the reasons for delay. He also said I should get invtouch with PALS. My daughter was diagnosed on the middle of all this and noted all my delays  - she had insurance via husbands job and hasn’t regretted going private. In her case being drip fed tests at 2 week intervals with 2 weeks waits for results on NHS also got her down before she made that decision. She doesnt need chaemo but I would have suggested she took into account the journey time to the private hospital … there are losds of appointments! So - consider PALS and at least get in touch with the insurers is my advice - wishing you all the best. Youn’ll get there! 

Thank you very much for your reply, that’s so helpful 

That’s a very long delay but bear in mind all of these things are risk reduction rather than direct treatment, and you have already started oestrogen blockers. That said, if you do have access to private health care there would be no harm in seeing if you can get faster treatment that way. I also agree with contacting PALS. 

Hi Coddfish

thanks for your reply…of course, your right, I realise these post surgery treatments are about reducing the risk of recurrence but surely waiting 14 -15 weeks before starting chemo increases that risk 

I rang BUPA to see if I was covered and I am. They were so helpful but as TheresaP said there will be a lot of appointments and therefore a lot of travelling if I go down that road 

I’m not sure what PALS can do. At my NHS Trust it seems all oncology patients are going to be in the same position so why should I jump the queue?

Hi, that feels like quite a delay to manage, particularly emotionally. I am wondering what is your hesitation about using BUPA? I have private healthcare through work and I used it for all my treatment.  On the occasions I was seen at the NHS, I understand that there's some process that the NHS are compensated for that from the private system, but mostly I was seen at the private clinic.  I even had some of my chemo and all phesgo treatment at home as this was the service offered and it worked very well. I hope that you find a solution that speeds up your treatment, best wishes 

Hi

Thanks for your reply 

I don’t really know why I’m hesitating! I guess I asked the question of my GP when I first found a lump back in December and she said there’s no point going private with something like breast cancer because of expedited nhs cancer pathways and I just accepted that. Probably a bit naive of me given the frustrating delays I’ve experienced with getting appointments and results!

Also, from what I’ve read on the chemotherapy threads on the breast cancer forums I wondered whether it was practical travelling almost 1.5 hours each way for private appointments rather than 30 minutes to my nhs chemotherapy department 

Also a bit worried about having to “top up” any hidden costs that Bupa might not cover

But after some thought I’ve now decided to use the Bupa cover. I don’t want to have any regrets - if my cancer came back further down the line I’d probably be thinking “why did I wait 15 weeks for chemotherapy when I didn’t need to?” ‍♀️

If you have the ability,  go private. I had my operation (double mastectomy full lymph node removal)  10 days ago all supported through private health care. I saw my oncologist yesterday and  we discussed my port being fitted in 3 weeks and my chemo starting in 4 and I signed all the papers rework. I need a bit longer to recover from my operation and get my movement back, so everything is completely healed but that’s the pace I’m looking at.

i hope that it all goes well 

Hello Jockypea and so sorry to hear about your difficulties. You made the right decision to go private.  I had all my treatment via Bupa through work cover and count my blessings.  Bupa are incredibly good with cancer care and  they have a cancer promise which basically means they would look after you if you are diagnosed with cancer and they did ! I had to travel 1 half hours too for my private treatment but I did not look back and thought better than going on waiting lists for life saving treatment.  All the best  with treatment and please do reach out or PM me if you need advice because we are all in this together.

Hi, do ask if they have any arrangements to have any treatment at home. My private health provider has a contract with Sciensus, who provides in home services 

Re PALS -,they may be able to help you but feedback is important, too. They may have reasons for why they are failing patients but failing they are and that needs to be on record. You never know but it may lead to them looking again at their procedures or help them put a case for more staff or funding…