Bone marrow biopsy

Hi Brandy 

I responded to the post you'd written about this in the cancer chat group a week ago and suggested that you either posted in the general cancer discussion group or that you joined the cancer group for the type of cancer your consultant is investigating.

To join and post in the general cancer discussion group just click on the link above and to join the group for the type of cancer you're being investigated for you can either look through this list or tell me and I'll provide you with a direct link.

Anne

Hi Brandy I am Mike and I help out across our various Blood Cancer Groups (see the list of all our groups that my friend latchbrook has put up)

Over my 25 years living with and being treated for 2 very rare types of T-Cell Non Hodgkin’s Lymphomas I have had many many Bone Marrow Biopsies……

Most were ‘textbook’ little or no pain….. but unfortunately, regardless as to what the info says and what other people say….. I have had a few significantly sore BMBs….. I mean very sore.

During a BMB there is definitely a circular motion as basically the person doing the BMB is basically drilling through the bone to get gain access to the spongy marrow inside the bone….. not nice but a necessary evil when you are living with a blood cancer.

Good afternoon

thank you for your reply.

Sorry for the delayed response, you are so far down your journey, I am only at the start of mine.

The whole biopsy was so traumatic and has affected my mental health, I am now speaking to a therapist and on sleeping tablets.

I didn’t feel the insertion of the aspiration needle at all, though.

I wrote to my Consultant and at my appointment today he said that they need people to let them know if they experience more pain than describe in the Bone Marrow Biopsy leaflet.  This is so they can investigate and try to improve the procedure.  

I felt relieved after he said that as I was worried about writing to him.  I now feel I may have contributed to improving the procedure, a positive from the pain.

I am now having genetic testing. Another 6 to 8 week wait!

Brandy

Good morning Brandy 

I am pleased that you feel that writing the letter has resulted in a positive outcome.

The fact that you started your reply with good afternoon suggests that you are not in the UK…… are you in the USA by any chance?

Macmillan Cancer Support is a UK based cancer charity but we do have folks from around the world use the Community from time to time..

The health system in the UK is rather different in that the majority of treatment is provided by our amazing National Health System (NHS) so there may be differences in how things are done.

Have you been given any indication as to the type of blood cancer your consultant is looking at?…… there are a few.

Lymphoma

Leukaemia

Myeloma

 myelodysplasia (MDS)

myeloproliferative neoplasms (MPN)

essential thrombocythaemia (ET)

polycythaemia vera (PV)

myelofibrosis (MF)

Yes I am well down the road…..

I was diagnosed in 1999 age 44 with one of the rare (8 in a million) hard to treat incurable types of slow growing Low-Grade NHLs - Cutaneous T-Cell (Mycosis Fungodes a rare type of skin NHL)……. 

Then in late 2013 a second rare (4 in a million) more aggressive fast growing High-Grade NHL - Peripheral T-Cell NHL came along taking me to stage 4…….

Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my story) but I am over 10 years out from my last treatment, I turned 70 last Nov and I am continuing to live a great life.

Always around to chat. 

Good afternoon,

I am in the Scotland, sorry to confuse you I should have said good evening.

There is a lot to be said for a positive mental attitude, I have a number of friends who have and are in remission from cancer, all have a very positive attitude and are living their lives to the full.  

I don’t have a diagnosis yet, The Consultant thinks I have had a false negative or the tests are not sensitive enough to pick up anything as I may be in the very early stages.  Hence more tests!

Can I ask, as you have experienced fairly good BMB, when you experienced more painful BMBs why did you not submit feedback?  Sorry just curious.

kind regards

Brandy

Hi Brandy……. you are talking to another Scot (hence my community name being Thehighlander) living up in Inverness.

You will see from my story (See my story) that over the first 14 years most of my treatment was done here in Inverness but between June 2014 and Oct 2015 I had a total of 10 weeks at The Beatson in Glasgow plus about 25 round trips - 6000+ miles for clinic appointments. 

As I said I have had many many BMBs and when I was feeling more pain than normal I just told the Nurse that was doing the procedure….. and they pumped in more anaesthetic to try and dull the area….. 

There is no guarantees that you can have a text book…… painless BMB…… they are drilling through your bone!!!

Over the years I have had the same very experienced Nurse doing a good number of my BMBs and the experience can be ever so different.

It is what it is……. I could put it in writing but in reality it makes no difference to the BMB process…… it’s not a perfect science.

They could change the info sheets to say it may be painful…… but in the end is that helpful considering that most times it’s not that painful…… would it raise the anxiety….. who knows.

I hope you get clarity soon. 

I had a bone marrow biopsy and was told it would not be painful but like you I found it really hurt through most of the procedure then they wanted to send me for another one I said no because of this ( I did actually go in the end ) I feel for you and know what you went through

Hi Toot  sorry to hear you experienced pain during your BMB.

I see from your other post that you have just been recently diagnosed with a rare condition which means I have tumours in your head and on your spine.

This is such a challenging time for yo, I do see that you have joined our dedicated…..

  Brain tumours

…… support group. This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

You may also to check out our…..

Spinal cord tumours

…… group as well.

All the very best.

Hi Toot,

sorry to here you too had a painful experience.  Was the second as painful?

Did the first one affect your mental health?  I ham exhibiting signed of post traumatic stress and on antidepressants. How did you get past it?  I think about it almost 24/7.

my friend had a biopsy and it was text book, it was as per the leaflet, she had a different doctor. 

I have put in a complaint.  I had gas and air and they totally ignored that I had it and never gave me time for it to work before they started the procedure.  Hence the complaint.

did you submit a complaint after your painful biopsy or discussed it with your consultant?

I don’t have a diagnosis and fear I will be asked to have another one but I will hold out to have it under general anaesthetic in theatre.  The consultant will be spitting feathers but never am I going through that again.

i hope ever Is going well with your treatment.  I have 3 friends who have survived cancer, all had a positive mind set which they believed helped.

thank you for your reply

Mel