Op to Rad..how long to wait

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my story.

I had to have 4 biopsies to gain my award of breast cancer. After the 1st biopsy my neck went into spasm. This was Sept 11th and neck still unmoveable… However. My question:

I had left breast mastectomy on 20th October.
I thought NICE guidelines were to start radiotherapy within 31 days if healed well.
I have healed fantastic.

Day 46 today and jus found out my date for CT on 8 Dec and then a 2 week wait until radiotherapy starts. This is basically going to be a 60day wait between op and radiotherapy?

Is this normal waiting time?

Has anybody else had to have 4 biopsies before a confirmed diagnosis?

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Hi Woofer,

I had 3 biopsies which came back as pre cancer but after first op they found a couple of dots of microinvasion.  I had to have a second lumpectomy to get clear margins.  I waited 10 weeks after my second op before I started rads which I finished last October. Try not to worry and go with the flow.  I was lucky with rads and didn’t suffer any bad side effects just went a tiny bit pink but kept it under control with loads of E45 cream. Hope all goes well for you. Eileen.

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Hi!
I asked my oncologist the same question, as there was a long delay between my surgery and starting rads. Her reply was that the guidelines are a political time span, not a medical one. she said to be reassured that they would never let anyone wait linger than the medical people considered safe to start the radiotherapy. Hope you fnd this reassuring. i was fine with my rads btw, 15 sessions and it went really quickly. my bc was a left side one, so I had to learn the breathholding thing, but it all went well once I got used to it. Good Luck!!.

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Mine will be 54 days from op till start of Rads.

 

Mine is left side. what is the beath holding thing?

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Mine left one too!!

Not heard about the breathing either!

Does arm have to go way above head? Same anility as untouched arm?

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I just worry that oncologist radiographers just say “not to worry” because they have such a backlog and pressure put on them and are undermanned etc…

Guidelines from NICE are surely there for a reason?

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I’m at a slightly different stage to you Woofer but I am confused at how urgent some of this urgent treatment is supposed to be.  After my biopsy (23 Oct 2015) I was told my case was very straightforward:  a Lumpectomy, Radiology and then discharge.  Luckily (I was told) the tumour was small with no apparent spread.

 

I had the Lumpectomy on 23 Nov 2015) - but that was after a bit of a push as they weren’t going to call me back in to give me the biopsy results until 26 Nov 2015.  Not having been through the breast cancer nightmare before I felt this was rather stupified for speed.  Anyway, through talking to other people I was told this was dragging on a bit.  I phoned another hospital in the region who were dismayed at the slowness of everything and they gave me a phone number for the Director of Medical Services.  I rang the number and after a bit of a flurry, a breathless breast nurse rang me in work to say the Lumpectomy would take place on 23 Nov.

 

Now I’ve been told I need to have an Axillary Node Clearance.  Apparently they found only the ‘‘tiniest amount of cells’’ in the Sentinel Lymph Node which wasn’t visible to the blue radioactive dye at the time of the operation, so I now go back in next month for that to be done.

 

Meanwhile … I ask myself how urgent or necessary with Radiology treatment is.  If the Sentinel Node had been clear I assume the Radiology would have started by now.  I’m assuming this waits until the second operation is done - and healed - and then they will do it all together.  Which leads me back to thinking how urgent the Radiology is.

 

I have many questions over the ‘‘conveyor belt’’ of breast cancer treatment.  I know each case is different but the issue of NICE guidelines was brought to my attention by another forum member recently, has made me wonder how much of the treatment is necessary or ‘‘nice to have’’ as if it was that urgent it would be done sooner.  Interestingly a good friend (pretty switched on) queried how much of an ‘‘industry’’ breast cancer has become.  The slick folder labelled Primary Breast Cancer with tons of information and enclosures put into my hand at the start got me thinking I have a price tag attached to being on the conveyor belt.  Drug treatment shareholders perhpas?

 

As for 4 biopsies (in your question) - they took 3 off me in different parts of the breast to get a level reading.  I haven’t had any since.

 

I’ll be interested to know how you get along with the Radiotherapy - when you get there.  Mine also seems light years away which makes me wonder how essential it is.

 

Misa

 

 

 

 

 

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Hi Misa

I feel for you hugely…like me in some ways as I think you too are wondering why your radiotherapy is being left until after your second op.

To me if there is a “gold standard” linked to radiotherapy then everyone would get it within the 31days from the op which NICE states…

I feel for you because it would appear you are having to wait a longer time, and like me, you are wondering how this added length of time is going to make the radiotherapy necessary or less effective.

Even my 62 day wait has now had a 4 day break in treatment due to NHS holidays. I’ve hD 3 days rad-4 off, then 3 days rad, then 3 more off.

I am still appalled that in our area sessions are meant to be 5 days rad, then 2 off for 3 weeks.
I feel as if my treatment has been compromised due to NHS not treating me on time and if they had I would not have had such “downtime” over the xmas holidays.

Even when the radiotherapists asked if I was happy with the planning days and told them that “no I wasn’t”- they took total umbridge. Later apologising because they were “hormonal”.

I do not know if these delays etc are “normal”. I certainly had no probs such as yourself needing a 2nd op. If there was a “gold standard” then it seems that the levels of gold are changeable. I got told my treatment was being chased along with other ladies because of a “backlog” and even then the Oncologist lied about expected time to start the radiotherapy and I got told “he’s new and doesn’t know our processes and procedures”.

I am angry at my treatment. I do not think a breast care patient should be treated this way.
Like you I wonder about the breast care conveyor belt…

I compare it to another critical illness that I’ve had for 30+ years and my treatment has always been superb in this and met NICE guidelines etc.

Breast care it appears runs on no set standards and they can make their own standards up lically as they go along.

My biopsies weren’t just 4 samples from 1 biopsy. Each time they took up to 5 samples from each of the 4 biopsies.

I wish you well in your treatment. By the way… Nobody ever diiscussed the option of “no radiotherapy” with me as they should have done to make a valid choice. They only discussed side effects of having it done. If they were being 100% true gold standard they would tell you the full options.

There is also a NPI statistic test done and my consultant never gave me those details either or the full brealdown of ER /PR results. Its only because I have full access to my records online and could view a copy of his letter to the GP that I found out all of the details.

I hope that you can get your 2nd part undertaken and treatment like radiotherapy for you will be discussed better and actioned in a quicker fashion somehow.

I liken it to Amazon though… They can get an order in and out within same day if necessary… If you accept free delivery that box ordered will still arrive within the timelines stated… And that is just for a box. It seems breastcare treatment depends on backlogs and holidays in my case…

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Hi Misa

I cannot believe the similarities:

I too am small… My whole breast when weighed was just 85grams.

Not only that I am 5’ 51/2" and weigh 8st 7 and am very lean and muscly and also 52!
I also in 2010 got very badly handled at mammogram and further biopsies then- which it actually took 5 supposed Dr’s to manhandle my very small boob then to get the biopsies done.
This time I had mamogram, ultrasound and 1st round of biopsies in one day.
Something occured during that day that sent my neck into spasms and cause for MRI and CT scan being done afterthe mastectomy. They found a lesion on neck but have ruled out secondary cancer but it is atypical haemangioma. Since the 1st lot of biopsies my neck has been unable to move up or down, left or right without pain and now I am also reliant upon morphine patches and diazepam until I can see a pain specialist in January.

I was only needing radiotherapy as the cancer was 0.10mm a way from my chest bone. If it was this close to my chest bone and I healed so perfectly then there was no reason besides NHS inadequacies in starting my treatment. Having such gaps in radiotherapy due to babk holidays to me is inexcusable.

I sound very harsh and angry. I am.
Like you I also believe something at my first mammogram and manhandling stirred the cancer in me… Thats just my thoughts and no proof obviously. Those first reports supposedly came back clear.

I am now requesting a copy of my full medical notes as I also had appalling treatment on the day ward at my hospital when I had mastectomy done. The treatment was disgusting due to the fact that the staff did not know how to handle another long term condition I have. I warned them pre op that I was not right and advised them the treatment that I needed. They totally ignored me and did the opposite. I was walked (stumbling) to the theatre by which time I was very seriously ill by the time I saw the surgeon and anaethetist…I mean very seriously ill… And this was compleyely avoidable if the ataff in the day ward had listened to me who has lived with rhis other illness and managed it for 30+ tears. If they had done as I requested instead of the opposite I would not have been so seriously ill when I stumbled down to the operating table.

I think we are all handled as “average” and not as “individuals”… And that gives the conveyor belt feeeling…

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Like you, I also dislike medicines and completely see whete you are coming from.

I have kept hugely fit and good despite having a critical illness as wel diagnosed 30+ years ago…I have no complications from it and this is unusual. I have previously only had to inject to keep alive each day… Others with this other illness can be on huge amounts of medicines and complications.
So until now I have kept really, really well and now I feel as the worth I had has been swept away… All control of my life has been removed and I feel as if this conveyor belt system needs “individuality” and better analysis and diagnosis.

Some very similar experiences to you. I was offered lumpectomy but opted for non reconstructive mastectomy due to being so small in the first place. I have huge intolerance to aspartame, artificial sweeteners and anything food wise artificial so I decided that there was no way my body was going to accept an artificial boob… I didn’t believe they could get a reconstructed boob to the shape of my other one anyway.

The treatment I have received from NHS for my breast care has hugely knocked my confidence in NHS and has guven me really deep depression. I cannot say just how badly their treatment has made me feel.

However, Misa. I feel for you hugely. You myst also be feeling in total turmoil. Have you phoned Macmillan advisors? They have got me through some of my very worst thoughts…

Incidentally even the Oncologist told me wrong information…

The trouble is asking for 2nd opinions delays things even further and when already anxious about times and necessity of treatment etc it can make you feel worse!!

I think we have to trust our gut instincts in some ways on this. I’m not a medic, like you we have had similar experiences but think we both have previously looked after ourselves with minimal medicines and feel as if we have no real good advice and control is being taken out of our hands and advice, timings, care
Is not as we would wish for ourselves…

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Hi Misa

I started radiotherapy eventually on 22nd December. Which of course fell all over bank holidays and it meant that I was not given 3 weeks of daily blasts… It was 3 days, then 4 days off 3 days then another 3 days off etc. When they asked at the planning session whether I was happy about the timings of the treatment…I said “no” I’m not. Not said nastily or anything and the radiotherapy girl went “upset” to her manager. I got an apology because I was not rude or anything similar. I just said I wasn’t happy. The apology I got stated that the radiotherapy girl was “hormonal”…
If they had done my radiotheeapy on time I would have 3 weeks of 5 days… So I wasn’t going to say I was happy when it was 3 days burning, then 4 days off etc.
I don’t think they really state how bad the side effects can be. They state “it’ll get worse 7-10days” after radiotherapy finishes… Mine is now 14days after and its still getting worse and worse.
I will never go through such treatment again. If I’d known what I know now… I really would have refused all treatment.
Like you my arm is getting worse. Under the armpit is dire. I’ve had 2 seromas drained in the armpit and it still comes back within 4 hours. I’ve also got very large discomfort from the inflamed swelling on my chest near the arm above the scar.
I’ve put jars of coconut oil on the burns. All other aloe vera gels or udder cream are just to thick. I smother everywhere with big lumps of coconut oil in my hand. My vest tshirt is literally so wet with the oil its drips off the bottom of it. But my chest is so hot within 30 minutes the tshirt is bone dry!! I have the wet oiled tshirt next to my skin sopping wet all the time and it has been good for the chest. Just amazed how hot my chest must be to dry it out within 30 minutes. So soothing to have the moisture permanently against chest area.
The arm pit though is horrendous. The skin has renewed nicely in 80% of the area, just the damage to neeve endings and the seroma I guess that like you is making moving it really hard.

We will get better but it currently seems a long way off for me.

When they took my first biopsy something triggered my neck to go into spasm. This was back in the beginning of September. From this I endes up on morphine patches and diazepam. Which then killed off my stomach from working. This week I got 6 injections in my neck and hopefully now can get off the morphine patches slowly… Weaned myself off the diazepam -was on that 4 months and shouldn’t have been for more than a week.
Hopefully then my stomach may start to work again.

I definitely would not have more treatment if cancer did return… Definitely not.

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Hi Misa

11removed and all clear! To me that is a lot of removal!

Did you have a nuclear dye put in through the nipple the day before for them to look at the lymph /axilla etc? I can’t remember the name of this procedure but it enabled them to take just 4 from me (also) clear.

I had to have another seemoa drain off under arm yesterday and the Consultant Did say that I looked like I had been very fit prior to op. (Not seen this breast doc before). She noted to me that fitter people struggle more as persons that are used to inactivity tended to get over it better…

Glad you mentioned yoga, this is something I think I may take up. I think I have to get to a physiotherapist 1st as I haven’t seen one yet as the hospital lwt my blood glucose levels get too high to do any exercise when the physiotherapist came round after the op. I was meant to be in charge of my insulin but due to complete mess up pre op they left a glucose drip running… And I didn’t know… So no physiotherapist. Just unsure whether to ask hospital or GP. Currently arm is pretty much unmoveable unless supported and helped by the other…

Have you had any seroma in your armpit from having 11 taken out?

I too eat healthy, healthy… Supposedly… Like your friend - apple cyder vinegar etc but all my food has been like this for a very long time due to a stomach condition…thats something that riles me up… I see others eat “unhealthy” and alot bigger than my size 8 and I do end up thinking “the good die young”…

Sounds crazy really but at the moment the pain from the radiotherapy is awful and the swelling from the seroma too so I’m a right misery!!

Its a battle but I’ve battled all my life with health so its just doing our best I guess. We are what genes we were given by our parents… I’msure that is still the biggest factor…
When wlll you find out about ypur radiotherapy?