Safe to wait?

Hi…this is my first post

I received my diagnosis a couple of weeks ago following my first mammogram in January of a invasive ductal/tubular carcinoma (strongly ER positive, HER negative).  MRI results identified it to be 2.3mm and the surgeon says its early and operable cancer.  Its looking like surgery sometime in April and I am unable to take the pre op hormone therapy such as Tamoxifen due to a pre existing condition and risk of blood clots.  I am keen to stay within the NHS but considering private if affordable, I have a consultation next week to explore this. Finding it difficult to understand the potential risk of waiting until mid/late April.  What is the likelihood of it growing or spreading in the meantime?   If it’s affordable and I did opt for private, can I opt back into the NHS after?

Hi Lottieann

Waiting is one of the most frustrating (and often anxiety-provoking) problems once you land in cancer-world.   First, I would hope to reassure you that usually cancer cells are quite sluggish (according to one oncologist I spoke to) and only the rarer types like triple negative are likely to spread more quickly. Ductal breast cancer is also less likely to spread than lobular bc. So you’re not at any risk - and your hospital team would not put you at risk and cancer is not running rampant or it would be a more advanced stage!

The optimal time between diagnosis and surgery (without other interventions) is up to 90 days, according to NICE, so you do fall within safe limits. Like you, I considered opting for private treatment. I was unaware of the two-week urgent referral and one look at my husband’s face when I said we now had to wait sent me straight to the laptop. I had my diagnoses (5 of them, week by week) and mastectomy/FAC done privately and, apart from their adapting to my specific needs more easily, there was no advantage.  Mistakes were made, things were sometimes sloppy and the frustration was not eased. Then, given that I was Stage 3, chemotherapy was the next step and the consultant I saw privately recommended I transfer to the NHS as I was self-funding. I was given a quote for chemo at the private hospital (manageable) but the consultant also worked in the NHS and was keen for me to transfer so I did. I couldn’t have wished for better treatment and the consultant was right - my needs were/are complex and by now we’d have had to sell our house!!

So yes, if you have your surgery done privately, you can transfer back to the NHS. Given your earlier stage, you are unlikely to need chemotherapy, but you may need radiotherapy (I was told I would receive that treatment at the NHS hospital but pay private rates!) which would send your bills soaring. The only disadvantage of transferring back I found was that I was at the end of a long queue and the wait between surgery and first chemo was 89 days, Christmas Eve. I attribute my current condition to that long delay (among other complex factors you don’t share, promise!).

I hope the consultation clarifies things for you. 6-8 weeks is a long time to wait and, for peace of mind alone, private treatment may be the right choice - but it isn’t necessary, only a preference. If you then return to the NHS, it’s probable you’ll be back to a long wait as the continuity of treatment was disrupted and you’re a the end of the queue again. So spend this time on something essential to what lies ahead - building your resilience. It’s all manageable, just not easy. Best of luck

Jan xx