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Lusafag: Your Treatment Dilemma

cmb's picture
cmb
Posts: 728
Joined: Jan 2018

Lusafag

I hope you'll forgive me if I recap what you've posted in several messages since it many be easier for others to respond to your questions if they have a better understanding of your situation by reading it in one message.

As I understand it, you and your husband are doctors in Pakistan, but since neither of you have been in private practice, you haven't been able to accumulate the funds needed for private insurance. Therefore, you're dependent upon your country's public health system, where local customs can sometimes take precedence over international medical practices.

You are 57 and were diagnosed in February through TVS, and D&C. You had a total abdominal hysterectomy with ovaries, tubes, cervix removed laparoscopically under not very good circumstances. As a result, you've had problems recovering from your surgery, including the development of an infection which has prevented your surgical incisions from healing. This has caused a delay in any further treatment.

Your pathology report shows that you have Endometroid Adenocarcinoma pathological stage T2bNxMx.

One radiologist has recommended just brachytherapy, taking your pT2b pathology as oncology stage 1 Another radiologist disagreed and recommended EBRT and possibly chemotherapy.

You've asked a different oncologist about getting tested for MMR and the possibility of immunotherapy. You also asked if you should seek another CT/MRI or at least a second opinion on your pre-surgery chest CT-scan that showed there were 6-8 nodules, with the largest being 4.8 mm.

That oncologist replied:

-MSI testing is costly and immunotherapy too

-If you can not afford immunotherapy then there is no need for MSI

-Review of CT scan is your call

-At least give brachytherapy

-Rest depends on primary consultant

 

CMB'S QUESTIONS AND COMMENTS:

If your chest scan showed several nodules, why do your doctors believe that your cancer was limited to the endometrium? When other women here have had nodules that look suspicious, their cancer is almost always staged higher than what yours was. And higher stages are treated with chemotherapy as well as radiation.

If you're able, I recommend seeking another opinion of your pathology report, along with the chest CT-scan, before starting any treatment. I would be very concerned about doing just radiation and not chemotherapy without another opinion.

Immunotherapy can be very expensive in the United States too. So most oncologists will start first with conventional chemotherapy, with Paclitaxel and Carboplatin being the most common first line drugs now used.

MAbound has given you some good advice on radiation and I see that you found the NCCN site for further reference as well. The video link you asked about in another message was posted by No Time for Cancer under "OncLive Peer Exchange videos" at https://csn.cancer.org/node/323502

Please keep in mind that many women have come and gone from this board after their treatment ended or, more sadly, when they passed away from their cancer. So while older posts still have lots of great information, the women who originally posted are often not here to respond to current questions. In most cases you'll get better responses by starting a new forum topic with your question(s).

You're in a very difficult position right now and it doesn't help that you've gotten conflicting information from your doctors. I respect the admirable effort you're making to learn more about your options. We definitely want to support you through this time and are very willing to share our experiences.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1801
Joined: Jun 2015

CMB, Once again our shining star! I have been struggling to know how to help Lusafag. And, what you just posted is priceless! So, thanks for being the caring, wonderful support person that you are. I truly value your participation.

Love and Hugs,

Cindi

alicia2020
Posts: 162
Joined: Sep 2020

Cmb, I, too, was wondering how to help and respond to Lusafag, and thought to myself..."cmb will take care of that a lot better than I can!" And I knew you'd do it sooner than later! We ALL are very grateful for you and for your guidance and support! Thank you! ❤️❤️❤️

Lusafag, you are in our prayers! I'm so sorry you are having such a difficult time.

Best to you,

Alicia

BluebirdOne's picture
BluebirdOne
Posts: 450
Joined: Jul 2018

We all thank you for helping Lusafag, for being able to organize her treatment and conditions to figure out her next steps. This is not easy in America, much less Pakistan! Thanks, cmb, and Lusafag, I hope you are able to get the treatment needed. 

Denise 

pato58's picture
pato58
Posts: 120
Joined: Jun 2018

Thank you so much!

 

cmb's picture
cmb
Posts: 728
Joined: Jan 2018

Thanks for the kind words ladies, but I always feel extra sympathy for those who join this board when English is not their native language. I can't imagine the additional stress that brings during an already challenging time.

Lusafag is in such a tough spot right now. I hope she can get enough information from here and other sources she's learned about to help her discuss options with her oncologists and radiologists. Fortunately, since she and her husband are both doctors, they are better able to discuss their findings and desired next steps than most of us were when we first learned we had cancer. But that doesn't mean it will be easy.

Harmanygroves's picture
Harmanygroves
Posts: 223
Joined: Jun 2021

I am new in this journey also, and I'm so grateful to be following your journey. 

CMB: you have again so competely earned my respect and appreciation for stepping up to help a sister.

I'm so glad I stumbled into this site last night. My eyes are burning, but I'm so glad to be here. 

 

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