Enlarged spleen CLL stage 0

[Redkatt]

My CLL was diagnosed 2020 at stage 0 and my bloods are all within normal ranges now. My spleen has become very enlarged over the last 6 months so my haematologist is sending me for a splenic biopsy. There has been talk of removing my spleen depending what they find. Has anyone else had this happen? Are there ways to shrink the spleen rather than remove it?

[AussieNeil Administrator]

Redkatt, welcome to our community on this your first post. You haven't shared where you live and doing so might help you find a CLL specialist who can give you a second opinion. I'd strongly recommend arranging one, because splenic biopsies are rather rare with CLL and splenectomies even more so, if the swelling is due to CLL, which is extremely commonly the case. CLL treatments for the last couple of decades do very well shrinking spleens and nodes back to normal size. Radiotherapy can also shrink your spleen if that's the only significant way your CLL is impacting your health and it is large enough to be considered doing this without having full treatment. You can check the CLL Society for doctors familiar with managing CLL here: cllsociety.org/newly-diagno...

This site explains more about splenic biopsies; radiopaedia.org/articles/sp...

Having a splenectomy means staying on antibiotics for life, as your spleen provides a reservoir for neutrophils to fight off serious infections. It also provides an emergency reservoir in the event of blood loss or the need for additional platelets, so in general is best retained.

If you live in the USA, you can get access to one free video appointment second opinion through the CLL Society; cllsociety.wpengine.com/pro...

If you share approximately where you live to ask for specialist recommendations, I expect you'll want to lock your post to this community for your privacy

healthunlocked.com/cllsuppo...

Neil

[Poodle2 in reply to AussieNeil]

I agree with Neil. I have not heard of anyone here who would need a spleen biopsy. My spleen was massive, 22cm. It was pretty obvious it was due to my CLL. It was back to normal size within 10days from commencing treatment (O+V). I would also advise you to find a CLL specialist. Good luck.

[Redkatt in reply to Poodle2]

We’re your bloods all normal range when your spleen was enlarged? Mine are all within normal range.

[Poodle2 in reply to Redkatt]

Sometimes CLL doesn't "show up" in blood. There are some of us, who have normal blood tests results but lots of other symptoms. When you have an enlarged spleen and CLL, the CLL is most likely behind it. I am not saying you have to start treatment but having your spleen removed is a big thing. Only a CLL specialist can advise you what the next steps should be and what is behind your enlarged spleen.

[Redkatt in reply to Poodle2]

So far no symptoms just the enlarged spleen

[Poodle2 in reply to Redkatt]

Redkatt, with all respect, an enlarged spleen IS a symptom of CLL, it is also a listed reason that could trigger treatment. Definitely speak to your CLL doctor and ask for a second opinion.

[Redkatt in reply to Poodle2]

Sorry, Badly worded response on my part. Just meant no other symptoms just enlarged spleen

[Redkatt in reply to AussieNeil]

Thanks Neil. I will get a second opinion. Just a strange scenario as all bloods are within normal ranges but spleen enlarged

[cajunjeff in reply to Redkatt]

Redkatt, Neil has given you excellent advice. When my spleen got very big, I did a lot of research and also concluded that splenectomies were rare with cll. That fact is such common knowledge, it makes one wonder how a hematologist could not know this.

I agree with Neil that you should seek a second opinion. That said, it cant be ruled out that your hematologist thinks there is something different about your spleen from other cases that warrants a spleen biopsy.

So yes, get a second opinion before doing a surgical procedure. But you might first consider discussing this with your hematologist and ask him if he thinks spleen biopsies are warranted in all cll swollen spleen cases or if there is something different about your presentation that explains why you need a biopsy. Swollen spleens are so common in cll cases, and spleen biopsies so uncommon, it seems like there has to be more to it.

If you do get a second opinion, you might also consider asking your current dr and your second opinion doctor to consult with each other to see if they can reach a consensus opinion.

My spleen was very big, but after a few months of ibrutinib it returned to normal size. I saw several Cll specialists during that time and nary a one ever suggested I get a biopsy.

[Redkatt in reply to cajunjeff]

I am going to check that removing my spleen was said in the consultation as I was a bit thrown and may have jumped to conclusions. Definitely the spleen biopsy was mentioned and the spleen is very enlarged

[SofiaDeo in reply to Redkatt]

Some versions of CLL don't show up in the blood, but do in lymph nodes/spleen. This is considered an SLL presentation kf the CLL and is even rarer than CLL, which is rare enough as it is. Please consider seeing a CLL specialist before agreeing to a splenectomy. Our particular Non Hodgkins Lymphoma doesn't act like other lymphomas, so a hem-onc that deals mostly with other lymphomas is likely not aware of this. CLL is rare, SLL even rarer, and a hem-onc needs to read the most current literature of about how to treat CLL/SLL.

May I ask, what tests were done to get you this diagnosis? If you got it as a "diagnosis of exclusion" without confirmatory testing, that may explain some confusion. Especially since you state "my bloods are all normal NOW"; what things were abnormal earlier? What testing was done?

[Redkatt in reply to SofiaDeo]

CLL was diagnosed with raised lymphocyte levels however these have returned to normal levels now however there are still abnormal lymphocytes in my blood

[Redkatt in reply to SofiaDeo]

Maybe it is SLL I have. I had blood tests done to confirm CLL

[PoisonDwarf in reply to Redkatt]

What markers did your blood tests show? A flow cytometry will show CLL markers if there are enough malignant B cells in your blood. Have you had a CT scan & did it show any enlarged lymph nodes? SLL is diagnosed by a biopsy of lymph nodes because in the early stages a CBC or full blood panel appears normal.

I was diagnosed with SLL, the only lymph nodes affected were deep within the chest cavity. I'd want answers to these questions before considering removal of my spleen, to confirm there was no other explanation for my spleen size. That could just be me of course!

[Redkatt in reply to PoisonDwarf]

CLL markers were found in my bloods. Recent CT scan showed enlarged spleen

[SofiaDeo in reply to Redkatt]

"Raised lymphocyte levels" is not enough to get a CLL diagnosis. Do you know what tests were done such that your lymphs are considered "abnormal"?

[Redkatt in reply to SofiaDeo]

Other blood tests were done too and abnormal cells were found

[ChillichilliBangBang in reply to AussieNeil]

Hi Neil

I had my splenectomy in 2001, before these new fangled drugs came along. I have not been"on antibiotics for life". I have lead a pretty normal existence for two decades after it. However, my bone marrow seems to need a little help these days.

One other point I would like some clarification on...

I have been treated in NZ and France, in both cases the Dr I consult with is backed up by a team of specialists, so you get a second opinion by default. Is this not the case elsewhere? Do Drs in the US, say, operate without consulting their peers?

Keep up the good work!

[Redkatt in reply to ChillichilliBangBang]

Do you find that you are more susceptible to infection without your spleen or has it not been that much of a difference?

[ChillichilliBangBang in reply to Redkatt]

As I say, 2 decades of normal immediately after, then one winter needed antibiotics three times. Next winter I started on immunoglobulin perfusions and a couple of years later (ie recently) on Zarzio injections to gee up my neutrophil counts. So at this stage my situation is more of a nuisance than anything else. I am not nearly as knowledgeable as others on this site, either about CLL in general or my version in particular. But the splenectomy was not really much of a life changing event.

[LeoPa in reply to ChillichilliBangBang]

I have a cousin who lost her spleen 45 years ago Not on ATB and doing fine. No CLL though.

[DanBro1 in reply to AussieNeil]

Neil, this board is fortunate to have such a wonderful resource like you to give us excellent insights on CLL issues. I had a few spleen questions myself about some "perceived" spleen problems. , particularly about beer belly bloating - without the beer. LOL

[Redkatt in reply to DanBro1]

It is so helpful to be able to get support from others here

[LeoPa]

Do you have enlarged lymph nodes? Do you have the SLL version? You shared too little info to form an opinion about what might be happening.

[Redkatt in reply to LeoPa]

I have CLL and no enlarged lymph nodes just very enlarged spleen

[LeoPa in reply to Redkatt]

Most unusual. First time I hear about such a case

[Pearlpink]

This was exactly my presentation, except that I had fatigue, which was ignored as a symptom.

They told me it was likely I wouldn’t need treatment for years, as they completely missed that my spleen was growing massive. I thought I had it sussed! I was eating healthily with a pretty low white count and they only saw me with 6 monthly phone calls.

I joined a research programme looking at the progress of watch and wait in different people.

A Ct scan showed my spleen was massive. They didn’t inform my team. 6 months later my team nearly had apoplexy when I showed them my scan at my routine appointment! They wanted to start me on treatment and just wanted to do an ultrasound scan before treating me.

My spleen had been clearing up my damaged cells. It was keeping everything under control I think and giving everyone the impression that there was nothing going on.

I was frightened that the team I was with thought that an ultrasound of the spleen was enough to assess tumour bulk load prior to venetoclax. They didn’t even discuss venetoclax with me - it was me who mentioned. And they didn’t think it was suitable. The letter from the hospital then said they had discussed with me that venetoclax was best choice and were going to start it!

I got a second opinion, at a specialist cancer hospital, with a brilliant cll specialist and it was the best thing I ever did.

As the others have said, we are all different. Some people present with large spleen and little else.

It is absolutely NOT current policy to biopsy spleens or remove them anymore. I suppose there are rare exceptions but to be honest, yours sounds like mine.

I had a PET CT scan as my spleen was growing very fast, and lots of blood tests, to rule out a fast growing splenic lymphoma, which they did. During that time my haemoglobin suddenly decreased to 10, and my white cells started to increase rapidly, so my very large spleen, which is an indicator for treatment, was a very good indicator indeed. My spleen had had enough of trying to control it all!

The new treatments, like V and O, and the BTK inhibitors eg Acalabrutinib etc are wonder drugs. They shrink your spleen back to normal.

Splenectomy is a relatively dangerous operation and used to be done years ago, prior to the great new treatments. It was done when the large spleen caused more symptoms than it prevented.

My spleen is normal after a year of venetoclax and obinutuzumab. All my spleen symptoms disappeared within 2 weeks of treatment though!

I echo everyone here, get a second opinion from a cll consultant! Best thing I ever did. Your consultant clearly isn’t.

Good luck! Don’t worry about treatment! Quite honestly it’s brilliant nowadays xx

[Redkatt in reply to Pearlpink]

Your case is so similiar to mine. It makes sense that the spleen is enlarged due to cleaning up all the rogue blood cells. I will be getting a second opinion

[LeoPa in reply to Pearlpink]

Wow. Just a big spleen and nothing else? Remarkable.

[Pearlpink in reply to LeoPa]

Yes I totally thought I had cured myself as my white blood counts went backwards! Was so disillusioned when I found my spleen had been growing secretly lol! But then within months everything went off!

[Redkatt in reply to Pearlpink]

My haemoglobin is slowly dropping so I’m thinking mine is about to take off too

[Elle_V]

My hematologist has treated my enlarged spleen with radiation to shrink it. I had already started Ibrutinub and my blood work was all normal except for the enlarged spleen.

[Redkatt in reply to Elle_V]

Did you start on Ibrutinub because of the enlarged spleen?

[Elle_V in reply to Redkatt]

No, I started Ibrutinub because of high lymphocyte count but a couple of years later my spleen was enlarged.

[Pinhead1]

Please do not have any surgeries until you speak to a CLL specialist. When my husband was first diagnosed we were seeing so many doctors our heads were spinning. We had to pick an oncologists to see the next specialists to get his neck CT done. That doctor was following the oncologists orders who we had not even seen yet. The oncologist ordered an unnecessary neck surgery to remove a lymph node. We saw the CLL specialist 24 hours after the surgery. He was not happy about the surgery. He stated, " I would have never ordered this surgery". So $60,000 dollars later, my husband had an unnecessary surgery. We could have sued, but chose to move on. The hospital has now changed their protocol.

[Redkatt in reply to Pinhead1]

I will most definitely seek another opinion as I don’t want any unnecessary surgeries either

[gardengirl80]

My spleen was also enlarged to 19 cm and hard as a rock before I started treatment but after the first two Gazyva infusions I could no longer feel it.

[Redkatt in reply to gardengirl80]

It is reassuring to know that there are drugs that can return the spleen to its normal size

[ksteinberglewis]

I was on w&w and stage 0 for many years. My spleen got enlarged so that I could feel it with every step. The only thing different in my life at that time was the stress of someone close almost dying. My spleen went back to normal without any medication or treatment after my stress subsided. We forget that our attitudes matter. I would get a second opinion if he wants to remove the spleen. Good luck

[Redkatt in reply to ksteinberglewis]

Definitely getting another opinion. Stress is so damaging to our mental and physical health.