Primary Breast Lymphoma

Redwood2020 · July 2020

Hello,

I am 63 and in April found an astonishing large lump in my Breast which was biopsied within 3 days. I had passed a full physical only weeks before and there were no lumps at all, so the thing was fast growing and aggresive. It turned out to be DLBCL, and the PET scan showed several lumps in the breast, no other locations, so they staged me as Stage 1,2 Extranodal. Because of Covid, I went straight to MSKCC and did not go out for second opinion which several of my friends thought I should do. My diagnosis was reviewed by 4 pathologist at Sloan Kettering, because of the oddity-of it, and the Onco. Team seemed unwavering that my therapy should not be delayed. I am now through my third R-Chop (of six total) chemo and they have added four cycles of Methotrexate to be given Intrathecaly, in my CNS. I am not finding it easy and have to live with a Chemical Migraine most days.

This has been such a shock, as I was feeling pretty healthy, prior to finding that mass in my breast. I suppose anyone in treatment is quite vulnerable to Covid, and have to live in a bubble. I have family living with me and they take care of me pretty well, but the isolation is wieghing on me.

My question to the community, is about the nagging question of second opinion. Do you feel that I should have or still need to send my slides to another institution. I just did not want to wait, since that malignancy was growing so fast. It had an uptake rate of >95% and my team was worried that Breast Lymphoma often invated the CNS. There isn't a whole lot to read on my specific situation, but plenty of you who have suffered the DLBCL.

I did not know how ill chemo makes you feel, so on some bad days, I have doubted my decision. I would appreciate your input.

Thanks,

Redwood

Lym999 · July 2020

Ct Scan?

Are you schedule for a CT Scan anytime soon? I had one done after my 3rd treatment to check my progress. I also had DLBCL in my chest except it started in my right lung.

Max Former Hodgkins Stage 3 · July 2020

Worry

Redwood,

Your actions have been sound and justified. Sloan is perhaps the best cancer institution in the world, so their quality is not suspect. While a second opinion is usually a good idea, they said that time was critical (it usually is NOT with lymphoma), so just have trust at this point.

There is nothing "wrong" with submitting the slides elsewhere. Johns Hopkins is about the only other place of similiar quality to SKCC, but I doubt I would do so.

Serious side-effets from CHOP are the NORM, so there was no avoiding that. Also, CHOP or EPOCH are the gold standards against aggressive B-cell NHL, and pretty much any other cancer center on earth woud have made the same drug choice.

Your description does indicate unusually aggressive disease. I would insist on the CNS checks, although that would not make the chemo experience any worse or better. It would involve adding a few drugs.

But mostly, I would be thankful to be in the hands of the best of the best. Obviously, share your thought with your oncologists there, and demand their views of what you have asked us.

max

PBL · July 2020

Standard of care

I second what Max has told you in his reply to your post: you have been from the start in the hands of one of the most prominent cancer care facilities, and R-CHOP plus prophylactic methotrexate, in such cases as primary breast DLBCL, is the universally established standard. Treatment couldn't be delayed, and you are already halfway through. Obviously, a cancer diagnosis is often a shock, and R-CHOP is no picnic, but it is your best shot at making a full recovery and getting on with your life.

You can still seek a second opinion at another major facility, if that helps you accept the diagnosis and treatment. You might also ask your medical team to direct you to someone for emotional and psychological support to help you come to terms with the situation.

At this point, I would say that the worst is already behind you, and you will find many here on the forum who can offer personal experience and tips as well - one way to help you get through this and alleviate the feeling of isolation.

Kind regards,

PBL

(Primary Bone Follicular Lymphoma, Dx 01/2016, 6xR-CHOP + Maintenance Rituximab 2016-2018)

Scubamom for two · August 2020

Greetings Redwood 2020,

Greetings Redwood 2020,

I also agree with the above posters that you went to one of the top facilities in the country. I doubt they would get it wrong. It is much more common to go to our local cancer folks and then seek a second or independent diagnosis from a top facility, such as Sloan or MD Anderson. I was diagnosed with Follicular NHL 9typically not aggressive) by my local Oncologist and after receiving excellent advice from a moderator on one of these forums, I sought an independent diagnosis and treatment plan at MD Anderson in Houston Texas. I could feel that the cancer was invadeing and damaging other areas of my body, so I knew it was aggressive. It was at MDA that they diagnosed me with a very aggressive form of DLBCL and my amazing Oncologist ordered an MRI of my Brain because this cancer often does travel through the CNS fluid and infiltrate the brain. I immediately started 6 rounds of DA-R-EPOCH, had 11 intrathecal doses of two alternating chemos, and then two consolidation rounds of High Dose Methotrexate. This was not a picnic and the IT chemo is unpleasant, but tolerable considering the likely alternative. I found that some of the PA's that administered the IT chemo were better for me at it than others, so after an especially unpleasant one where I had to be given a numbing injection twice because the PA could not find a spot to draw CNS fluid after putting the needle all the way in and then inject the chemo into, I started requesting to only have appiontments with certain PA"s. That definitely helped. Also, drinking a highly caffeinated beverage may help keep any headaches at bay. Anyway, I am now 2-1/2 years in remission and feeling mostly like my normal self. Please feel free to ask me any questions if you have any, although I realize everyone's experience is different. Take care and stay strong!

Cheers,

Scubamom for two/Diane

Redwood2020 · August 2020

Scubamom for two said:
Greetings Redwood 2020,
Greetings Redwood 2020,

I also agree with the above posters that you went to one of the top facilities in the country. I doubt they would get it wrong. It is much more common to go to our local cancer folks and then seek a second or independent diagnosis from a top facility, such as Sloan or MD Anderson. I was diagnosed with Follicular NHL 9typically not aggressive) by my local Oncologist and after receiving excellent advice from a moderator on one of these forums, I sought an independent diagnosis and treatment plan at MD Anderson in Houston Texas. I could feel that the cancer was invadeing and damaging other areas of my body, so I knew it was aggressive. It was at MDA that they diagnosed me with a very aggressive form of DLBCL and my amazing Oncologist ordered an MRI of my Brain because this cancer often does travel through the CNS fluid and infiltrate the brain. I immediately started 6 rounds of DA-R-EPOCH, had 11 intrathecal doses of two alternating chemos, and then two consolidation rounds of High Dose Methotrexate. This was not a picnic and the IT chemo is unpleasant, but tolerable considering the likely alternative. I found that some of the PA's that administered the IT chemo were better for me at it than others, so after an especially unpleasant one where I had to be given a numbing injection twice because the PA could not find a spot to draw CNS fluid after putting the needle all the way in and then inject the chemo into, I started requesting to only have appiontments with certain PA"s. That definitely helped. Also, drinking a highly caffeinated beverage may help keep any headaches at bay. Anyway, I am now 2-1/2 years in remission and feeling mostly like my normal self. Please feel free to ask me any questions if you have any, although I realize everyone's experience is different. Take care and stay strong!

Cheers,

Scubamom for two/Diane

Follow up

Hello,

and thanks for you help. So sorry to have been out of touch for a while. I really appreciate all the input. I did have a PET scan and they indicate my tumors are shrinking and each time I have a lumbar puncture, they say it is negative. My bones have activity on the PET but the PA says it looks like neulasta cell generation to them and not CA invasion. All you can do is trust the experience. I have one more round of RChop, and have finished 4 IT Methotrexate. the chemo makes me very ill during the second week, so I just try to get to the better days. The tiredness is hard to describe to anyone, but I think people here would understand.

Has anyone gotten bad esophagus pain from the chemo. Its a new thing for me this round, but makes eating and drinking really hard.

Redwood2020 · August 2020

Lym999 said:
Ct Scan?
Are you schedule for a CT Scan anytime soon? I had one done after my 3rd treatment to check my progress. I also had DLBCL in my chest except it started in my right lung.

PET scan

I did have one at the end of july and it was a positive result.

Redwood2020 · August 2020

Scubamom for two said:
Greetings Redwood 2020,
Greetings Redwood 2020,

I also agree with the above posters that you went to one of the top facilities in the country. I doubt they would get it wrong. It is much more common to go to our local cancer folks and then seek a second or independent diagnosis from a top facility, such as Sloan or MD Anderson. I was diagnosed with Follicular NHL 9typically not aggressive) by my local Oncologist and after receiving excellent advice from a moderator on one of these forums, I sought an independent diagnosis and treatment plan at MD Anderson in Houston Texas. I could feel that the cancer was invadeing and damaging other areas of my body, so I knew it was aggressive. It was at MDA that they diagnosed me with a very aggressive form of DLBCL and my amazing Oncologist ordered an MRI of my Brain because this cancer often does travel through the CNS fluid and infiltrate the brain. I immediately started 6 rounds of DA-R-EPOCH, had 11 intrathecal doses of two alternating chemos, and then two consolidation rounds of High Dose Methotrexate. This was not a picnic and the IT chemo is unpleasant, but tolerable considering the likely alternative. I found that some of the PA's that administered the IT chemo were better for me at it than others, so after an especially unpleasant one where I had to be given a numbing injection twice because the PA could not find a spot to draw CNS fluid after putting the needle all the way in and then inject the chemo into, I started requesting to only have appiontments with certain PA"s. That definitely helped. Also, drinking a highly caffeinated beverage may help keep any headaches at bay. Anyway, I am now 2-1/2 years in remission and feeling mostly like my normal self. Please feel free to ask me any questions if you have any, although I realize everyone's experience is different. Take care and stay strong!

Cheers,

Scubamom for two/Diane

Cns

Scubamom,

did they ever see any invasion in your CNS? You had a lot of IT treatments compared to the 4 that i have done. Im so dlad that you have had a good outcome from MDA!

I agree that the person doing the tap is key to your comfort.

Max Former Hodgkins Stage 3 · August 2020

Redwood2020 said:
Cns
Scubamom,

did they ever see any invasion in your CNS? You had a lot of IT treatments compared to the 4 that i have done. Im so dlad that you have had a good outcome from MDA!

I agree that the person doing the tap is key to your comfort.

CNS

Redwood, a woman in my church was diagnosed with NHL and CNS lymphoma about two years ago. She did the usual, standardized treatments for this, and is fine today, doing well. I recall that her CNS meds were applied into the spine. I need to call her soon and ask how things have been going.

Primary Breast Lymphoma

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