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treatment delayed. anyone?

2 REPLIES 2
angelblue
Member

Re: treatment delayed. anyone?

Hi. I was in a very similar situation timewise. I had surgery (mastectomy and tissue expander) and at my follow up appointment 3 weeks later the plan was just radiotherapy followed by tamoxifen (they said I was low risk of recurrence and had no node involvement but I was concerned as I had 4 tumours even though the largest was only 10mm). Then there was an additional 2 week wait when oncology somehow didn't realise I'd had my follow up appointment with the surgeon - they only knew once I phoned them to find out about delay! When I saw oncologist I actually insisted on the oncotype test which added another 4 week wait whilst sample was sent off to Onccotype labs in USA. Then when I went back for results I was completely shocked as Oncotype had changed my risk of recurrence from low to high (my score was 31). So at that point chemo was recommended. By the time chemo started I was at 11 weeks post surgery. I really panicked as I read a lot of information and ideally chemo should start as soon as possible after surgery. But it is still proven to be effective within 12 weeks. 

 

I do understand how you feel. When starting chemo I felt that I was going to go through this horrible treatment but the effect of it wouldn't be as good as if I'd started sooner. But I've had lots of reasurrances that within 12 weeks is fine and as some women have infections following their surgery they do start later than that. I've had 2 chemos so far. My second was delayed by a week due to low blood count. I then had 5 x filgrastim injections to boost blood count but my third chemo is now postponed (should have been this monday) due to still having low white blood count!! Again this got me fretting but it does happen alot that chemo gets delayed by a week. 

 

The good thing is that Oncotype is one of the most advanced tests for recurrence and there is a chance that it'll come back low and you won't need chemo xxx

Jaybro
Member

Re: treatment delayed. anyone?

I really feel for you. Of course you’re fearful, as was I. I opted to have my surgery done privately (diagnosis late September, surgery within 2 weeks) and therefore was referred on to a private oncologist. The oncologist saw me early in November but, as I don’t have medical insurance and live in an area where there is an NHS Centre of Excellence for cancer treatment, he encouraged me to look at NHS treatment and arranged for visits to both oncology treatment centres. I then opted for NHS treatment and that’s when things seemed to stick - transferring from private to public sector and getting an appointment at an over-popular centre. My oncologist assured me that the surgery had removed the immediate risks, so he wasn’t concerned about the delay. There is a preferred timescale after surgery but it’s not set in tablets of stone. I started my chemotherapy on Christmas Eve, several weeks late but within the advised 90 days.

 

Our diagnoses and timescales seem similar, though my sentinel node was positive, as were 19 of the 21 lymph nodes removed in axillary clearance. I was fearful about some enlarged lymph vessels in what remains of my breast muscle (CT scan), envisaging cancer cells running rampant through my body if they weren’t stopped in their tracks, and I was even afraid to massage my wounds and muscles in case I disturbed the cancer cells (nonsense, but how was I to know?).

 

I would trust your oncologist’s judgment. Having the right information will affect your treatment plan and dosages and any rogue cells (it’s great that your sentinel node is negative) will be picked up during your treatment through CT/MRI/bone scans. Trust isn’t easy (especially if, like me, you got a clear mammogram in February only to be told 8 months later the cancer was ‘well-established’) but oncology is an ever-developing science and no oncologist would put you at risk - they want positive outcomes.

 

I hope you don’t need chemotherapy because it’s a pretty horrid experience but, if you do, I am confident it will destroy anything in its path! Add radiotherapy and subsequent hormone therapy and those potential microscopic cells don’t stand much chance. However, I would advise you to be proactive - don’t wait for a letter, ring regularly to see if the results have arrived. Don’t be concerned about being a nuisance - your mental wellbeing is an essential part of the recovery and hospital bureaucracy can seem very slow. The sooner you get your answers and start your treatment, the better your peace of mind. 

 

On the bright side, I’m only in my second chemo cycle and have been told that officially I am now considered cancer-free. By the end of the summer, this will be a nightmare in the past for both of us! Good luck.

hannawas
Member

treatment delayed. anyone?

Hi everyone!

I need some help as I am really stressed at the moment. 
I was diagnosed with invasive carcinoma on my left breast, stage 2 (3 tumours) ER + PR +, Her2 -  (in september 2018). 
I had the sentinel node negative, and had a mastectomy with reconstruction surgery in one breast (by the end of november ) with lymphovascular invasion.

After that I had a an unfortunate late appointment with an oncologist that sent me to do the Oncotype Dx to check my need of doing chemo or just hormonotherapy. As it was not available in my country it delayed the start of my treatment, still waiting for the results. Possibly will start either chemo or hormonotherapy at the 10 or 11 week after surgery. Does anyone knows if this delay would cause me any harm? Was anyone in this situation? My onc prefers to wait for the results, though they are late but I am afraid any cancer cells can spread or the treatment won't be as effective.

Thank you all and all the best on your journeys.