ET cancer or not.

[Hydrox]

Hi all, I went to the genetic cancer clinic today as they testing my family for the breast cancer gene. They have a list of my families cancers, 2 sisters with breast cancer, 1 brother with lung cancer 1 brother with prostate cancer, and my father with brain cancer. My sister who went to the first meeting had added my ET diagnosis as a cancer which is what I believed it was. This has not been recognised by the clinic and has not been included in the study. So can anyone on this site clarify it for me. Do I insist ET be added or is it just in GB that it is not recognised as a cancer and I ignore it. Thank you in anticipation of a reply.

[Dazakella2010]

ET Is indeed listed as a rare blood cancer.

Essential thrombocythemia (ET) is one of a related group of blood cancers known as “myeloproliferative neoplasms” (MPNs) in which cells in the bone marrow that produce the blood cells develop and function abnormally.

[Applesnpears]

ET is a cancer and most ( though not all) doctors in the UK will say it is. However ET and other MPNs are not regarded as genetic cancers as they are not inherited.

MPNs are thought to arise due to mutations acquired after birth.

It may be that the the study you are involved with is not including cancers which are the result of acquired mutations.

That said it seems strange to exclude your ET as some of the other cancers in your family (especially the lung cancer) could be the result of acquired mutations rather than inherited genes.

It is worth asking for an explanation. It may be that the researchers have a good reason to exclude ET and other MPNs.

[Hydrox in reply to Applesnpears]

Yes thankyou it is probably worth asking the question.

[carlyjo in reply to Hydrox]

That's interesting as when I was going through genetic testing for breast cancer , they were only interested in members of the extended family affected by breast or ovarian cancers rather than any other type. (That was at the genetic family tree mapping stage .)?My sister had advanced breast cancer, my paternal aunt too and myself with DCIS ( early form) . Although I suppose given so many members of your immediate family having a form of cancer would have to be considered. My maternal aunt had it too but knew it wasn't a genetic form .Interesting I didn't test positive for BRAC genes. Simply an unhappy coincidence. Although they did test for other possible genetic factors. That is ongoing research I believe . I was diagnosed with ET last year .Ive often wondered if there was a connection but more especially as a result of extensive surgery at the time . Who knows ?

[Hydrox in reply to carlyjo]

Yes, who knows, I wish I did, they take a note of all immediate family members cancers then decide whether or not to take it further depending on the types of cancers. Breast and ovarian being the most important, but take into account other types of cancer, dont know them all, before making the decision.

[Daisy62 in reply to carlyjo]

Did you by chance have the CHEK2 gene mutation? It increases the risk for breast and a number of other cancers. There is also a couple references that allude to a possible blood cancer link with this mutation.

[carlyjo in reply to Daisy62]

Oh I don't know. I'll maybe ask about that. Thanks Daisy 62 😊

[Hydrox in reply to Daisy62]

I am Jack 2+ not heard of the check2 gene.

[JackLina in reply to Applesnpears]

I find this interesting due to the lack of full knowledge about the acquisition of MPNs. What research has been carried out to extablish that MPNs are NEVER inherited? I ask this because, although my m other is now deceased, I am noticing similarities to her symptoms that could easily have been put down to ET, which I have (ET JAK2+).

As well as this, we have at least one other member of MPN Voice who has a mother who has been diagnosed with the same MPN.

Are you aware of any associated research? If so, do ytou have links in order that I could access it? Please. Best regards. Penelope

[hunter5582 in reply to JackLina]

There is research underway regarding clustering of MPNs in families. My daughter and I, both JAK2+, just signed up to participate in a study headed up by Dr. Angela Fleischman. wearempn.org/

Here are a couple of links to existing research.

nature.com/articles/ng.341

ashpublications.org/blood/a...

The short version is that the JAK2 mutation is an acquired mutation - you are not born with it. The propensity to acquiring the mutation might be inherited. There appears to be a JAK2 v617f haplotype that can be inherited that make you more susceptible to acquiring the mutation. Interesting research. Hopefully we will learn more in the near future.

[JackLina in reply to hunter5582]

Thank you. That's really interesting. I'll take a look. Please let me know how the study goes. All the best.

[Applesnpears in reply to JackLina]

Penelope. Although there is no evidence that MPNs are inherited from your parents there are examples of familial clusters of MPNs. Although the mechanisms are not fully understood it appears that you can inherit a predisposition to acquire a mutation that can cause an MPN. ( Yes it is hard to understand).

It means that someone who has a relative with an MPN may be at greater risk of developing an MPN. Its not possible to generalise about the increased risk and it is possible that some family clusters can be due to similar exposures to chemicals or other agents that might cause the mutations.

The link below gives some more details.

cancernetwork.com/cancer-ma...

[Zanzibi in reply to Applesnpears]

I agree it makes sense to talk to them again about including it, even if the mutation is not considered an inherited one. I have the BRCA2 mutation, discovered about 15 years ago when I had breast cancer. Was diagnosed with ET about a month ago. I have been curious whether there could be any correlation between the two in terms of whether one mutation can play some role in the likelihood of another developing. The more data available to researchers, the more likely we will know one way or another.

[Hydrox in reply to Zanzibi]

Agreed thank you.

[Applesnpears in reply to Zanzibi]

Pauline. You may find that the clinic is solely concerned with very specific types of genes or cancer where there is a well established family link and they want to encourage other family members to take extra tests or treatment. A sort of family medical appointment.

They may be less concerned about undertaking and publishings more fundamental scientific research to understand possible family linkages for other cancers such as MPNs.

[socrates_8 in reply to Applesnpears]

Hey there...

You make some excellent points here about acquired and genetically inheritable familial dispositions... My current understanding is that there is no definitive proof either way at this juncture... just broad speculation...

On the other hand, ET, PV and indeed all MPNs were reclassified as rare forms of blood cancers in 2008 by the World Health Organisation (WHO)

Best wishes

Steve

(Sydney)

[Ovingite]

ET and other MPNs were classified as cancer by the WHO in 2008 as they are caused by the uncontrolled proliferation of cells due to genetic mutation. Most medical insurance policies also now recognise it as a cancer, but some clinicians still hold to the old classification of 'disorder' rather than cancer.

John

[Eadaoin in reply to Ovingite]

I have had MPN/MDS for over 20 years but without gene mutations - a proliferation of cells in ET.

[Lifam]

ET is one of the blood cancers (MPN)

[Wyebird]

It’s definitely a cancer. I wonder if it’s because you have to wait for a gene to mutate before they can tell. I had a blood test taken for breast cancer research 10 years before diagnosis. My consultant was able to retrieve it and test it. ET was not present.

[Hydrox in reply to Wyebird]

I will write and ask why, will let you know the answer.

[Wyebird in reply to Hydrox]

I’ll look out for your reply with interest. I’ve often thought if mutation just takes seconds to occur.

[jillydabrat]

Recognised as a blood cancer by World Health Authority in 2008 I believe so they can’t argue with that.

[Hydrox in reply to jillydabrat]

Thanks for that.

[MoNut]

I’ve had ET for 29 years (since 1991) and have only just found out that it is recognised by the World Health Organisation (WHO) as a blood cancer. It was a surprise to me as in the early days we did not have any information. I was also told that treated properly we should have a normal and healthy lifespan. Very confusing.

[Hydrox in reply to MoNut]

Great to hear, hope so.

[JackLina in reply to MoNut]

I get the impression that the lack of information given to patients is akin to the lack of information/knowledge given to patients is linked to the lack of information possessed by the consultant haematologist yto visit! In fact, in my experience, this has certainly been the case. Until now! I believe I have the best.

[Hydrox in reply to JackLina]

I do not visit a heamatologist now as I am deemed stable, therefore I see a specialist nurse 3 monthly. I don’t mind this except when I need to ask questions which the nurse cannot answer, hence asking MPN voice. Very frustrating.

[JackLina in reply to Hydrox]

It's great isn't it? I was told about six months ago by my haema that a great idea would be if I just phoned in every three months to have my appointment and avoid having to wait!!! I nearly burst into tears because those appointments were the closest thing I was getting to 'care'. Needless to say I refused. Six months on I have found myself a knowledgeable, kind and caring haematologist.

[Eadaoin in reply to JackLina]

Sometimes I have a ‘bleed and go’ appointment when/if stable and get a phone call in the evening from my specialist nurse telling me the results. This way saves time for the staff in a constantly overbooked Clinic and it is quicker for me too. I can talk to a consultant when/if I feel I need to and, of course, if there is a problem result I would be asked to come back. I have been monitored at that Clinic for 20 years with MPN/MDS and feel very well cared for.

[MiltonBradley]

It is recognized by WHO as a cancer but is is an acquired benign cancer due to exposure to toxins not inherited. However, I have read on rare occasions it can be familial. So, if you suspect any family member may have had heart attacks, strokes or blood clots at a young age I would suggest it being included. Hope this helps and God Bless your family.

[Hydrox in reply to MiltonBradley]

Thank you very much.

[Coradelphine]

Hi there,

I'm so sorry that your family has been hit so badly with cancer I wish there was magic in this world!!!

I have had ET for 16 years and it was classed as a disease at that time, Im not sure how long ago it was reclassified as cancer, but it was. All MPNs are cancers.

Perhaps your consultant doesn't want to include it as it isn't a typical cancer.

Do you see a haematologist for regular blood tests? I would suggest that she/he is the person to explain it to you

[Hydrox in reply to Coradelphine]

Thanks for that and no I see a specialist nurse 3 monthly. I will try and get her to explain things at my next appt.

[Hannah52]

I was told when I was first diagnosed 4 years ago that it was cancer by my consultant. Just a thought if your sister put it down as ET and not essential thrombocythaemia they might not no what it is as it is rare

[Uzza]

It is a cancer. Oxford Dictionary: neoplasm /ˈni:ə(ʊ)plaz(ə)m/ ♫

▶ noun a new and abnormal growth of tissue in a part of the body, especially as a characteristic of cancer: carcinoma of the cervix is a common neoplasm in women | [mass noun] colonic neoplasm may be missed in some patients. etc....

Cheers