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Splenic Marginal Zone Lymphoma and Breast Cancer

Erica M
Posts: 3
Joined: Aug 2016

Hi All,

My mother was diagnosed with SMZL in December 2014, was treated with chemo and Rituxan, and has been in remission since May 2015.  She responded very well to treatment and her spleen shrunk back to normal size.  My mother has also been a breast-cancer survivor of 10 years.  She recently had an enlarged lymph-node, and during the ultrasound, they found a small 8mm mass which she had biopsied.  I was a wreck thinking that the lymphoma was back in some way and transformed into a different kind.  I have been doing research to learn more about SMZL and found this site helpful to hear other's stories especially on SMZL since this is a rare kind of NHL.  Her biopsy results just came back today and we found out she has breast-cancer again.  She will be having a double mastectomy in 3-4 weeks.  Not sure what kind of treatment will be involved yet.  Has anyone found out they had cancer while in remission from a different type of cancer?  Since the lymphoma attacks the immune system, her being sick with something else worries me.  If anyone has any insight on this please share.  I am trying to stay positive for her, and I know she will get through this - again - but I don't know what to expect long-term with the SMZL. 

Regards,

Erica

 

Max Former Hodg...
Posts: 3693
Joined: May 2012

Welcome, Erica. While I don't know a lot about SMZL, I can address some of your other concerns.

I have been in complete remission from Stage III HL since 2010, and got Stage II prostate cancer in 2015. Following surgical removal, it seems cured also. Although of course there are major differences, there are also enough similiarities between them for me to regard prostate cancer as a sort of "men's breast cancer" (although some men also get per se breast cancer).  I say this because they are both hormonally-driven diseases: breast by estrogen, prostate by testosterone. Treatments are similiar, as are survival rates at matching stages.

While I am not a doctor or trained medical expert, I seriously doubt that NHL had anything whatsoever to do with the recurrence of her breast cancer; they are just completely differening cell types.  And her breast cancer preceeded NHL years ago, it did not follow it.

After a person achieves full remission from lymphoma, and after all of the drugs are out of the body, the immune system basically is as good as it ever was before.  We are never 100%, especially those who had advanced disease, but also neither are we damaged goods, highly more vulnerable that we were prior to lymphoma.

I lost a dear friend to b/c last year, 47 years old, never previously sick. I did most of her research for her. There are many differing types of breast cancer, which determine what treatments are used, and when. Since presumably your mom has been getting post-lymphoma scans, and since only one node was found, hopefully she is early-stage.  Treatment options include surgery, chemo, radiation, and hormonal therapy.  Some women get one or two of these modalities, some get all, in differing amounts.  My friend was advanced stage IV, "triple negative"  -- the worst possible diagnosis. FEW women have this diagnosis.

The chemos employed differ from those used against lymphoma, and is usually centered around Taxotere, the same chemo used against prostate. She received a tough combination used against stage IV, known as TAC.  Many women receive chemo following surgery, a proceedure known as adjuvant therapy; the notion is that the drugs will kill any missed cells.

Trivia note: Stage IV prostate cancer is never curable, but can usually be controlled. Conversely, most breast cancers are at least potentially curable, even in Stage IV.  Breast cancer and prostate, late stage, are both treated hormonally: estrogen-eliminating drugs are used in women, testosterone eliminating drugs in men, which is called "chemical castration."

Her biopsy particulars and staging will begin to clarify what, if any, treatments beyond the surgery she is likely to receive.

I hope others will write regarding the particulars of SMZL.

max

 

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yesyes2
Posts: 592
Joined: Jul 2009

Hi Max,

First I want to let you know how much I appreciate your knowledge and sharing of information on this board.  You have been most helpful for many board members through out our journy with Lymphoma.  

I am a 2 time breast cancer survivor going back to 1992 and again in other breast in 2008, during my first treatment for aggressive Lymphoma. Recurrance of the lymphoma in 2009 also.  I have never been told by any of my oncologists that BC is cureable.  As long as I am in NED all is good, but cured, no.  I have volunteered my services with many BC patients and have never heared that Stage 4 BC is curable.  Can you referrence for me where you found this information.  I do know that as long as a stage 4 remains in the bones it can be cosidered a cronic disease.  My husband was diagnosed this year with a very rare form of stage 2 prostate cancer, had a prostectomy with no further evidence of disease.  He also is considered to be in NED.  Because my Lymphoma is so very rare, more like DLBC with differences, and a T cell componant with Epstine Barr, I have been told I will never be considered cured, but most likely it will never come back.

Hello Erica,

I agree with Max that it is unlikely that your mom's BC is connected to her Lymphoma.  Obviously, like all of us here, our immune systems have gone haywire in some way.  My second BC, not a recurrance of the first BC in '92 was discovered on a PET scan 2 weeks after having a mammo.  I was lucky as it was very early and a stage 0.

I hope your mother's surgery goes well and that she might not need any further treatment.  It's hard dealing with multi cancers but there is a wonderful support system here on this board.

Leslie

Erica M
Posts: 3
Joined: Aug 2016

Hi Leslie, 

Thank you for sharing your insight as well.  Ironically, my mother's BC was also found in a PET scan 2 months after having a mammo.  Do you mind letting me know if you got a masectomy?  I do find that this site has been a wonderful support system and am so happy that I found it.  I wish everyone the best on their journey! 

Erica

 

yesyes2
Posts: 592
Joined: Jul 2009

Hi Erica,

Okay, a little of my history.  First time through left the tumor in my breast on a stage 2 BC, which was very aggressive.  I had chemo, CMF amd radiation.  I said no to hormone replacement after taking for 3 miserable months.  This was in 1992/93, before the current drugs.  Did not have lymphnodes tested either.

The second time was in 2008 in the other breat and was a stage 0, very indolent, slow growing.  Had a lumpectomy with no testing of nodes and decided to not have radiation or hormone treatments.  Radiation and my body do not do well togetherso not a difficult choice fror me.

As you can see, I am not a follow by the book kind of patient.  I know my body well, find the best doctors, do my research and accept living with my decisions.

I am wishing you and your mom the best on this difficult journey.  If you have more questions just ask.

Oh BTW, my BC has never shown up on mammograms.  I was having MRIs when breast MRIs were still in the testing phase.  Research, research, research.

 

 

Erica M
Posts: 3
Joined: Aug 2016

Hi Max, 

Thank you so much for your insight.  I have read several other threads on the topic of SMZL and your comments are very knowledgable, uplifting and I have learned a great deal from reading them.  I am happy to hear you are in remission from both HL and prostate cancer.  I am so sorry to hear about the loss of your dear friend.  Although we don't know for sure yet, my mother believe's her BC is at a very early stage again (stage I or II) and there won't be much concern (fingers crossed).  Taxotere was used in the chemo my mother had the first time she had breast cancer (I don't really know anything about taxotere).  A friend of hers heard that taxotere can cause lymphoma; however, I have not done enough research to really know if this could have been related.  From what I have read so far, chemo is a toxin that could cause a secondary malignancy.  My mother works at a hospital and knows many great doctors.  She definitely learns a lot from them about what she has, but she doesn't do much research on her own (possibly because of denial or not wanting to read something she doesn't want to read).  I do believe that knowledge is power and do want to know as much as I can about the type of cancer(s) she has and what all of her treatment options are.  I am her only child, most of her family lives far from us and I need to be her rock.  Thank you again for responding and addressing some of my concerns.  I wasn't really okay with the fact that my mother has cancer for a THIRD time, but she has always been so proactive in finding it early enough to have it treated and move on.  I think the SMZL worries me the most since this is not yet curable (although very treatable) and don't know what to expet long-term.  

Erica

 

Max Former Hodg...
Posts: 3693
Joined: May 2012

Thank you yes yes -- your journey has been a long one.

When "T" was diagnosed, her staging initially of course was ambiguous, until several biopsies from differing sites were completed.  A treatment team was assembled at our medical center, which is also a teaching hospital: an oncology surgeon, a general surgeon, a medical oncologist, and a radiation oncologist.  In their first session, she was told by them that although her situation was dire, they thought that curative effect was possibly achievable.  They began her treatments, chemo and surgical removal, but T, for some reason, decided to seek out another pinion, and went for a week to MD Anderson at their main (Houston) location for a second opinion. They told her that they could not do better than what the local hospital was doing, and she returned home. But they also told her that she was, in their opinion, terminal, and they were correct.  I found a matrix online from some cancer center that rated survival chances for various breast csncers:  it showed that stage IV, triple negative had a survival rate at five  years ranging from  5% to 15%. Obviously, the situation was bleak, and it was about a year's time from her diagnosis to death.

Most oncologists, like my own, explain that oncology no longer likes to use the term 'cure,' in reference to any cancer. But the doctors and professional journals do so anyway. My own doctor, after telling me that the term 'cure' is no longer used, then began dictation into his recorder, recording our meeting, and that I was beginning R-ABVD toward curative effect.  I asked what that meant, and he explained that treatments are prescribed as 'curative' or 'palliative,' depending on intended and likely outcome (I should note that he is Board Certified in Palliative Medicine, as well as internal medicine, medical oncology, and hemaetology).  So, the profession is essentially schizophrenic in practice: it routinely uses nomenclature which it disavows.   In practice, 'complete remission,' or 'no evidence of disease' are equivalent to what was formerly dubbed 'cured.' 

Me, I don't care what they call it. If I am in 'complete remission,' it can be called "cured" or not. It can be reckoned "curable," or not.  Fourty years ago, my current state regarding lymphoma would have been described as 'cured.'

Oncology also has conventions regarding which diseases, at which stages, can potentially achieve 'complete remission.' Stage IV breast cancer I have seen described both ways. I will look for examples from journals demonstrating this, since you asked. On the same thought, numerous lymphomas, mostly indolent strains, are conventionally described as 'incurable.' These, even when there is NED, are presumed still present.  These are strains that often go into what is termed "maintenance" (usually Rituxan or other antibody biologics), a sort of lymphoma limbo.   Or there may be residual disease that is still detectable via scanning but which is not advancing, which of course is called partial remission.

In particular I have always, consistently, read that prostate cancer outside the gland (i.e., metastatic) is never 'curable.'. Hormonal treatments may keep PSA at zero, even for a decade or more, but it is understood to still be there.

So, in my view, the confusion is in nomenclature.  If I had a disease that was undetectable and had no symptoms for years or decades, I would go ahead and call it cured, just for the fun of it.

I hope your husband is, and remains, well.

yesyes2
Posts: 592
Joined: Jul 2009

Thanks Max, am looking forward to what articles you may find.  Triple negative BC even in the early stage is a very nasty disease.  I believe that and Inflammatory BC are the two most deadly forms.  The problem with these 2 forms are they don't respond well to our current chemo therapies.  In this reguard they are much like T cell and sub type lymphomas.  If my Lymphoma had not responded to RCHOP I was told that I might need to go to an experamental trial for Hodgkins.  Because my cancer was so very rare. only around 200 cases a year, there wasn't any track records.

I am sorry for the loss of your friend.  T was very blessed to have a caring friend as you on her journey. 

Max Former Hodg...
Posts: 3693
Joined: May 2012

yesyes2,

You reopen my interest in the employment of the word "cure" in oncology.  It may seem like hair-splitting to some, but I have followed numerous discussions here and at the the Prostate Board regarding whether a given strain of either disease is "curable," so it is something that matters to patients.  As I explained above, I believe the issue is simply that doctors have in clinical practice replaced the word "cure" with the phrase "complete remission."   So many people who were told they were "cured" later relapsed, and understandably were upset with their doctors, wanting to know how they relapsed if they had been "cured."  Stating that the patient is in "C.R" allows the doctor to remain predicitve-free: they may give survival statistics, but are relieved of stating whether a person will get sick again.

My own HL strain is relatively prone among lymphomas to relapse: 15%. So my onc said I was in total remission, and most likely would never see the disease again, but that a 15% possibility remained. Fair enough....  Similiarly, my urological surgeon, after the gland was analyzed by the pathologist, and after a year of undetectable PSA results, refused to say I was "cured," but did say that "I would rate that you have a 90% chance of never having prostate cancer again."  I'll settle for that; it doesn't have to be called "a cure."

My first cousin, after Angelina Jolee had her precautionary mastectomy two or three years ago, went and was tested for the BRAC-1 mutant gene, and was positive.  She had had a mild Stage II b/c many years ago, treated successfully with lumpectomy and radiation. Because testing positive for BRCA gives an 87% liklihood of developing aggressive breast cancer, she had a double mastectomy, as well as her ovaries removed. Tough stuff !

I looked at SEER Data at Susan G K today, and it lists the survival rate for Stage IV Triple-Negative at 6%.....

Still, oncology and hematology journals continue to routinely use the word cure, both in regards to breast cancers and most others. The following are a brief sampling that I found in about five minutes. The writers seem to be using the word in a common-sense, conventional sense, much as we laypeople would do.

Not a professional journal, but quotes a leading breast cancer specialist (an MD/Surgeon):

http://www.nydailynews.com/life-style/health/breast-cancer-cases-curable-mammograms-article-1.449003

Texas Oncology website tells patients that Stage III b/c is potentially "curable."  Does state that Stage IV is ordinarily regarded as "incurable." The statement of curability is buried fairly deep in the ariticle: 

http://www.texasoncology.com/types-of-cancer/breast-cancer/stage-iii-breast-cancer

Older (1984) full-geek professional abstract discussing (at a very high level) "Whether breast cancer is a curable disease?" The thesis of the study demonstrates that it is an open question.

http://www.ncbi.nlm.nih.gov/pubmed/6697318

 

max

 

 

yesyes2
Posts: 592
Joined: Jul 2009

Max,

Thank you for taking the time to look up articles on this subject.  I am in agreement with your statements on the use of the term cure.  Long ago I remember it was the attaining of the 5 year cancer free mark as being considered a cure.  I think most cancer patients back than died by that point so if you were still alive you are cured.

I know a women with stage 4 BC who was diagnosed at stage 4 20 years ago.  Every so often her cancer comes back in a new location and is taken care of.  Her specific type of cancer is very slow growing, not usually the case for most.

If you are alive and having a good quality of life it really doesn't change any thing if you are in a CR as opposed to a cure.  However that being said, it does have an effect on my mental attitude.  My onc believes I am at a very high risk of a recurrance of BC and thinks I may be Braca positive.  I am choosing not to be tested at this time as is my perogitive.  

I will say I was devistated for a time when at the five year mark after treatment for an agressive very rare NHL, I was told they could not ever say I was cured.  My lymphoma is gone but the epstein barr is still in my system and as long as that is there I am at risk of a recurrance.  

Have a grest day,

Leslie

 

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