Confused more and more

[Karen m]

Hi
I have been under (not literally!) my haematologist for over a year now after resenting signs of extreme fatigue. I was referred by my gp and have since had regular bloods taken and to date, 3 biopsys. The first biopsy showd a hypocellular bone marrow of 10%. My haematologist was happy for a watch and wait approach. I then developed breast cancer in July this year. On the day of surgery I was found to be neutrapinic at 0.90. My breast cancer was grade 3, stage 2a, triple negative. I was due to have chemo but after another bone marrow biopsy showing a 10-15% cellularity. I was told this was too unsafe to do chemo. I have since had another biopsy from my lower spine as an MRI showed 'shadows' on the spine and on my sternum. I have been told there's no evidence of bc cells in the marrow however, this biopsy showed hypercellular activity. I have been backwards and forwards between oncologists, spine surgeons and a haematologist and don't seem to be getting anywhere. I live in rural Norfolk in the uk and I appear to be rare! They were reluctant to call my condition AA but have kinda since said it is.
I'm 40 with 3 children and scared about the lack of support here with just a 'wait' and see situation.
Anyone else had bc and a marrow problem?
Kind regards
Karen x

[KMac]

Karen,

I am very sorry to hear of your dual diagnosis. I'm not aware of another case of both of these diagnoses simultaneously.

I would strongly urge you to do all you can to see a hematologist specializing in bone marrow failure disorders, such as Dr. Judith Marsh there in the UK. I understand she is one of the top specialists in the world for this. I would guess she'd have some insight on how to handle dual treatment.

I think you are completely in the right to be frustrated that your current hematologist can't give you more definitive answers by now. This is a very upsetting situation, that unfortunately seems to happen all too frequently in rare bone marrow failure disorders - i.e. the hematologist takes a 'watch and wait' attitude on something they don't fully understand, instead of referring the patient to a specialist.

I wish you the best of luck in your search.

[Hopeful]

Hi Karen,

I am really sorry that you have to go through all of this and understand your frustration with the continual stream of specialist appointments.

I agree with KMac that you must make use of this watch-and-wait period to consult with other specialists in bone marrow failure disease. How are your RBCs and Platelets doing?

If you do have AA, you probably aren't a candidate for immune suppression because it can encourage tumor growth. However, it may be possible that something like cytoxan could work for both your breast cancer and AA. I am not in the medical field and do not have experience with breast cancer personally, but am just trying to think of some other options that I've heard others talk about. Although it will be hard, it would be wise to consult with another specialist like Dr. Marsh to confirm that watch-and-wait is the right approach and to come up with a different strategy if it isn't.

Hope you find some answers!

[Karen m]

Hi Kevin and. Hopeful
Thank you so much for your replies.
It's so nice to speak with people who have even heard of these illnesses!! Most people I talk to haven't a clue! It's so hard to explain to people why I haven't been able to have chemo for my breast cancer.
I haven't heard of Judith. Marsh but I have since googled her and she seems right up there in the world of AA!
She's at Kings in London. I have just recently asked to be referred to the Royal Marsden hospital in London with regard to a second opinion with my Breast Cancer. We have gone private as the NHS were taking an age. Albeit I've had a lot of tests within the NHS system which must have cost thousands.... Some of the results appear abit wolly. I became frustrated and opted for a private opinion at the Marsden. I'm worried now in case I also need a private opinion within the haematology aspect as I have 2 things going on!
I guess I can ask to be referred to Pro Judith at kings within the NHS system and let the appointment take it's time (prob 8-12 weeks)
I'm not very good at waiting! Till now I had a prolapsed disc 6 years ago. I had a MRI and surgery within a week! Then it was business as usual. These diseases tend to be very much diagnoses of exclusion (am I right?), waiting and waiting for results.
I have only just, a few days ago gained access to some of my blood and various other test results. (Not all of them) I will, if you don't mind, post some of the results and see what you think. You seem both very educated in these fields and my head is exploding with, is it AA, MDS, PNH, lymphoma, SLE.... To name but a few.
I haven't been offered any treatment. Just to avoid NSAIDs. (A nuisance as I have a lot of back pain)
Another thing, I'm not sure if I'm mad but could there be any relationship with the bc and the bone marrow problem. I'm not sure which came first. Can bc cause bone marrow hypocellularity? My bone marrow last month was shown to be hyper cellular (70%). The first 2 tests were from the pelvis (December 2013 and august 2014 showing 10-15% cellularity) and the most recent test from my spine (L3). Could it be that now the breast cancer has been removed by surgery, the bone marrow has recovered. Would it be better to have another sample from the pelvis for comparison. In this case, I'm cured!!!
Or could the bone marrow problem have caused my immune system to not recognise and kill the breast cancer cells, allowing them to multiply and cause a solid tumour which in time was discovered?. In this case, without chemotherapy I could have another tumour in time? Just a fleeting thought!!

Thank you for listening!! I guess it's still early days. But I don't want to waste my life thinking, what ifs. I don't want endless hospital trips watching, waiting for a bomb to go off.....soon?, maybe never. Is it best to be ignorantly blissful and deal with the symptoms as and when and if they ever manifest themselves. Knowing that you're just enjoying and carrying on with life until you physically can't and then do something about it? I don't know.

What I do know is, that this forum is ace!!! It has a long long history of posts regarding every aspect of bone marrow diseases. It's like a whole massive sports field of haematologists (I swear you guys make more sense than the one I've spoke to!) and people with a wealth of personally experience. I just need about a year to read it all!!!!

Hope everyone is well and enjoying life. It's a sunny Autumnal day here in Norfolk, UK.

Have a great weekend.
karenxxxxx

[Hopeful]

Hi Karen,

I know that for bone marrow failure disorders, the BMB should be done on the long bones, as they have the most cells. In adults, this would typically be the pelvic bone. In the old days, they used the sternum! So, I don't know if I would count the spinal BMB for diagnosis of a bone marrow failure disease but more to ensure that the bc has not spread to the bones.

Some inherited forms of bone marrow failure, like Fanconi's Anemia, are associated with an increased risk of cancer.

So, there are a lot of things for your doctors to sort out before taking action, which unfortunately means more tests and waiting to ensure a proper diagnosis.

Enjoy your autumn day! It is still summer here in California. Best of luck!

[Shazza]

Hi Karen,

I'm in Harlow, Essex - so not too far from you.

Like your initial result, I have 10-15% bone marrow cellularity with no malignancy.

I'm under the care of Kings College Hospital in London. It's a bit of a journey but I have every confidence in my diagnosis & treatment. They've said I have 3 possible outcomes - MDS, AA or to remain stable but there's no data on this condition as its apparently very rare!

I'm really sorry to read of your added complications but feel sure that the professors at Kings might be able to advise you & your doctors.

Best wishes

[Karen m]

HI

its been along time since ive posted. I am currently having chemo to treat the breast cancer with regular bloods tests. i inject GCSF to support the white blood cells and this seems to be working very well with my wbc sometimes tipping 36!
i am nearly half way through a six month treatment regime and as long as my bloods cope the oncologists dont seem to be particularly worried about my hypocellular bone marrow.
However, i am concerned about the long term effect of the chemo on my bone marrow and the natural reduction in the bone marrow cellularity. I was 39 when diagnosed with a bone marrow problem..... can the bone marrow function normally for many decades or am i likely to see a progression in this problem?
Could it be that the reduction in my white blood count lead to the cancer in the first place as my body couldnt fight it off? Does that mean that im on a back foot if the caner reoccurs or another primary cancer?
Im not scared, i just want to know what i am up against in the future.

[Birgitta-A]

Hi Karen!
Good that you have managed the breast cancer chemo so well with G-CSF injections !

You are right when you think that chemo probably isn't OK for your hypocellular bone marrow - we hope that enough stem cells will survive.

We know that cancer can get worse if the immune system isn't working well but I have never read that low WBC can lead to cancer.

There are patients who are born with low WBC and I don't think they get cancer more frequently than other persons.

Kind regards
Birgitta-A
75 yo, dx MDS Interm-1 with severe fibrosis and hypocellularity 2006. Supportive therapy until 2010. Treated with the immunmodulating drugs Thalidomide and Revlimid 2010-2014. Now AML and homecare with blood txs and G-CSF (Nivestim).

[DanL]

Karen,

This is a very good question that I have not seen a lot of research on. Anything that I could come up with speaks specifically about prolonged immune suppression and the correlation between immune suppression and the development of secondary tumors.

The idea behind this is that when the immune system is not working properly - ie suppressed - tumor suppression genes are basically made blind and would not then function properly and identify tumor or cancer cells effectively, therefore allowing the cancer cells to grow.

Since I am not a pathologist, I would not necessarily make the leap that suppression is equivalent to low white blood counts in permitting tumors to grow.

To complicate matters, there is a correlation between people who have had pneumonia and bronchitis and developing MDS/AML. In some of these cases, the theory is that the immune system never fully shuts down, eventually causing chromosome damage that leads to MDS.

Not sure that this helped, but it is the two cents I can offer.